Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Lena on July 12, 2009, 05:49:55 PM
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I think it's time to open this new topic concerning ferriprox-exjade combination therapy. I remember Andy was extremely interested on this subject and now I have some more info on it.
During my last transfusion day I learned that some more patients in my Unit are on a ferriprox-exjade combination therapy and to tell you the truth I start thinking about it myself.
Of course, I hesitate a bit. I guess I'll have to search it a little first as far as the side effects on kidneys are concerned and because this comb is highly rare. I talked to a girl who is on it and she is doing well, her ferritin has dropped and she -up to now- has no side effects at all. Let's see how it will go on.
Lena.
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Lena,
Yes, I am very interested in this combination. What I found at the Singapore conference was that doctors were very reluctant to even think about trying the combo because both drugs can have adverse effects on the kidneys and liver. However, this thinking is not the result of any trials, so no one really knows what to expect. I do think that if it is to be tried, that it should be first tested on patients, such as yourself, who have their iron load under control and who also have no pre-existing problems with these organs. Once safety and efficacy is established in low ferritin patients, I think trials could be expanded to those with higher ferritin levels as long as they do not have any serious problems with these organs.
I would not suggest ANY patient try this combo without being under a doctor's regular supervision.
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I am also really really interested in this combination,but sadly,doctors here aren't even allowing patients combination of exjade and desferal,let alone exjade and ferriprox :dunno i don't know how many people here on our forum can start this combo with their doctor's permission,if we can have a study on that,keeping track of side effects and positive outcomes,that would be great.
Zaini.
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Just a brief new entry:
an adult thal-major on ferriprox-exjade combi has succeeded in maintaining her sf, for almost one year now, under 100. No side effects.
Lena.
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Lena ,
Wow,,,,, Super good NEWS... its a big step towards a good and easy chelation treatment... i m reallly very happy to hear this NEWS ... may this study will get approval soon and doctors around the world will adopt it .... its really a big succes and it will benefit to all thals .. Thanx a bunch for sharing this very important ifo with us :) ... i hope you'll keep sharing useful n important info with all of us ...
Best Rgerads
Tak Care
Umair
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That is really good to hear! I will try to get more info about this in Oakland.
Sharmin
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Lena,
Thanks for the update.
I really wish Ferrirpox would be made readily available to patients in the US. Perhaps if American patients were given the opportunity to protect their hearts with Ferriprox I would not keep hearing bad news like I did today about another young American patient succumbing to heart failure.
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Andy,
Sorry to hear about that patient,how old was he or she?
Sharmin,
Definitely add this matter to your list of questions,lets see what they have to say after they hear about what lena said.
Zaini.
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Andy,
I am so sorry to hear that! I hope that L1 is available to patients soon.
Sharmin
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I am very interested in that! Thanks for sharing, Lena! :hugfriend
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Sharmin,
is there any news on this from Oakland?
Another young girl of 12 I know has been on this combination for almost a year now and she keeps her fe at 26! Amazing, isn't it? The only side effect she had - but now she is ok - came from exjade and was an instant rise in her transaminases- and when she stopped it for a while, everything came back to normal and she went on with ferriprox-exjade combi.
I think the knowledge will come only when trials are in order.
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Lena,
Thanks for the update,i wish doctors would research into that as it seems to be the best combination ever :dunno .
Zaini.
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Lena,
Is there any more information on exjade/L1 combination? This would be great for adults and children alike. Combination therapy is really ideal, and this combination therapy would be easier to comply to.
I am really starting to believe for many reasons, young children benefit from starting on an oral chelator. Not only because of the sub Q needles, but because of the effects on bones. There is much evidence indicating that children on desferal before the age of 7 are smaller in stature as compare to those who were not. Of course iron overload also contributes to short stature - and many many negative effects - therefore finding chelation methods that are easier on the bones and growth is ideal.
If this combination can avoid some of the adverse effects of desferal on growth and yet be able to maintain iron levels below 100 - children having such treatment can expect to grow very similarly to other children.
Again, I hope that L1 will be approved for use in North America soon - and that clinics here can begin investigating the use of this combination soon.
Sharmin
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Sharmin,
We are testing that in our Thalassemia Unit. Results are to be shown in the near future. It surely is a fresh approach, tested nowhere else. Its success would be a great step for thals, although there are contradictions saying there is no protocol yet concerning this. If you ask me, same contradictions had been stated when desferal-ferriprox combination therapy was first tried. But thank God, they were not followed and look where we are now.
I'll surely keep you posted on this.
Lena.
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That would be a dream combination :yes life would be much more easier for future thals.
Zaini.
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Talking about New Year's Resolutions, mine is to start on Ferriprox-Exjade combination therapy. I have finally reached this conclusion. I'll begin on New Year at the level of ferritin 170 (latest count now) and let's see what will happen.
I am a little afraid, of course, I admit that, as this is a new chelation project not worldwide applied.
However, I think it is worth it because if everything turns out fine, my life quality would be improved. I consider 30 years pumping to be enough, don't you think?
Lena.
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Best wishes, Lena. You certainly do deserve a break from the pump.
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Best of Luck Lena...
Abbas
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30 years is more then enough Lena,wishing you all the best, :hugfriend but why exjade and ferriprox and why not just exjade,since you already have very low ferritin level?
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Thank you all guys- Andy and Abbas and Zaini - for your support. :hugfriend
Zaini,
I choose Ferriprox and Exjade together because I do not trust Exjade alone as a strong chelator.
I know Zainab is on Exjade alone, but I think this is good for her case. She must avoid desferal because of her age and better growth. But this may be for now - she may be turned by her doctors on a combination therapy in the future. From what I have heard, exjade monotherapy is not for long.
Of course, each one of us is a different case and will do what suits him/her best according to doctor's orders.
I personally feel more confident when on combination therapy and I surely prefer Ferriprox to be one of my chelators permanently due to its good effects on heart.
Lena.
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Hi Lena, good luck with the Ferriprox-Exjade therapy.
I was on desferal-ferriprox combination but had to stop it because of joint-pains at my hands. It went so far that I could not make a fist anymore. After stopping and prednisone therapy the pain reliefs but have still swollen finger-bones...
Now I'm on Exjade and my ferritin-level is 1200. I'm a bit surprised that you want to do the combination therapy as your ferritin level is so low. I was told that for thal.major the ferritin should not go below 500 as our body is used to a high level.
Andy maybe you know more about this ?
All the best
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Hi Flyaway,
There was a short but interesting discussion about what the target should be for ferritin levels, at the recent conference in NYC. Doctors talked about how the goal was once "under 1000" and then "under 500" and now? Well, the consensus is that we really don't know how low it should go but the idea was put forth that "normal" ferritin levels may eventually be the goal, with normal referring to the iron load of non-thals with normal iron loads. I also met Lena's doctor there. She is working to keep her patients at a ferritin level of 100. This has to be done under close supervision but I agree with the idea. Why shouldn't thals try to be as close to normal as possible? More and more, doctors are taking the attitude that with well managed care, thals should strive to be normal. It sounds simple but is actually a major step and I agree there is no reason that a patient in a well managed treatment program should not try to have normal levels in most things. I also agree with Lena's thoughts about combination chelation because each chelator has unique properties and work better in some areas of the body than other chelators. By using a combination, there is a better chance of getting iron out of all organs and tissue throughout the body.
I really hope that people like you and Lena do serve as inspirations to the younger thal patients who may have doubts about their own potential in life. I really think that thals have a very good chance of having a fairly normal lifespan with today's treatment options and that this can only improve with coming developments. Our task is to give these younger patients an honest portrayal of what is possible, and give them the support to see this happen in their lives. Many have grown hearing all the same things you did as a child and teen and we need to make sure we get through to them so they too, can believe in their own potential.
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Thank you for your kind wishes, Flyaway.
Andy put it right - in our Thal Unit ferritin level is kept near normal standards. There are people who have 30 or 40 ferritin but they keep on combination chelation therapy. Most of us have clean MRIs but we do not lower our chelation dosages. This way, the MRIs get cleaner year in year out and at the same time we keep our ferritins really low.
Lena.
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Hi Andy, thanks for your explanation. I really hope that Lena and myself are giving some aspiration to the young thal. patients. It's so important to be compliant with the chelation therapy, and Lena is a real model also for me. She managed to bring her ferritin-level that low.
Bravo Lena, please keep us updated how your combination therapy is working. I'll keep my fingers crossed for you :smiley Best wishes, flyaway
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Flyaway,
you make me blush! :thankyou2 for your kind words.
I'll keep you all posted - well, I really need your positive attitude, too!
All the best to you, too.
Lena.
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I think it is time for a new trial. We know about the benefit of combination desferal and ferriprox. But know we need to know more about exjade-ferriprox combination. I ask myself why it takes so long to make clinical trials about this drugs combination. Wish you the best, Lena.
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An interesting point on this topic is that there is really nothing to prevent your doctor from prescribing a combination that has not yet gone through trials. I've known several people who have used the desferal/Exjade combo, and this began shortly after the approval of Exjade. The doctors weighed the needs of the patients against the absence of trials and decided the trials would be in these patients who needed added chelation. Not all doctors are willing to wait, as the patient's lives are deemed more important than procedure. I think that as long as this is done under a doctor's supervision, that it is acceptable to use a combination that has not yet been through trials.
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Gabri,
thanks a lot. Were not the same questions when the ferriprox-desferal combo first started?
I think there were. Yet, some doctors proceeded to apply that combo and look how beneficial it has been proved to be. It's the same thing with ferriprox-exjade combination therapy.
Andy,
I have realised that it depends on the doctor if he decides or not to proceed to any new therapy. It has to do with his character, his strong will to test new methods, his ambition. There are doctors, on the contrary, who are afraid of being responsible for any new start. They are conservative due to their character and do not pioneer anything new.
As long as the patient's health is not at stake because of every new method, there is no need to sit still and wait for the clinical trials which may never happen. And of course, new methods are not applied only in cases of patients whose lives are in danger. My case is not among them. Iron does not threaten my life, however I am willing to start on this new combo because there is another very important factor to take into consideration: that of my life quality improvement.
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Good luck my dear friend Lena. Keep us up to date. :hugfriend
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Thank you Dore. :hugfriend
I will keep you posted.
Lena.
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Well friends,
the New Year has come and it's time to contemplate my steps to enter ferriprox-exjade combination therapy. Not that I am that comfortable but I think I'll give it a try.My last fe count was 133, but I have complied a lot since(in order to bring it under 100 and then start on fe-exjade), so I have reasons to believe it's under 100 now. I'll get another count on 20.1 and see.
I'm thinking, however, to start it. I talked to some guys in my Unit and there was a thal among them, who started it since August (ferritin 800) and his fe is now 200.No side effects.
This is what I fear the most and makes me reluctant:the two chelation drugs interacting with each other. But I will overcome my reluctance and try it.It is worth the try.
Lena.
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Lena,
Best of Luck for the new combination and everything :goodluck :) ....
Best Regards
Take care
Umair
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Thanks, Umair, you too.
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Good luck Lena :goodluck i really hope this combination will work for you and will open doors to others who wanna try it.
Zaini.
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Good Luck!!! :hugfriend
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Lena,
First of all I am so proud of you for taking such initiative and charge of your own care. Secondly, I am so glad to hear that your ferritin levels are in the normal range - after hearing about you I have been pursuing these levels for my son as well. Thirdly, best of luck with the combination. I think that because your levels are so low, you will need only small levels of each drug to maintain very low iron levels. Each drug will provide you with different methods of protection and work in conjunction with each other.
Best of luck,
Love,
Sharmin
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Thank you Dori, thank you Zaini. :hugfriend
Sharmin,
- after hearing about you I have been pursuing these levels for my son as well.
Thank you. This is enough reason for me to post in this site, because that's what this site is all about: info and support.
Lena.
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Lena, best of luck..........
Abbas
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Thank you, Abbas. All the best for Najaf, too. She is such a sweet little angel...
Lena.
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Tomorrow is the big day!
I start with ferriprox-exjade combination therapy. I am a little worried whether exjade will launch o.k with me, but I try to be optimistic and keep in mind that this may be a chance to get rid of desferal for good.
(which may be the case anyway because due to my low ferritin desferal seems to start being toxic in me, causing heart palpitation when administered.) So, if exjade does not work in the end,it is possible that I will stick to ferriprox alone.
Wish me luck! (Isn't that what Zaini had said when Zainab started on exjade, too?)
Lena.
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Good luck Lena. I'm sure it will be nice to get a break from needles.
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Good luck Lena :goodluck i am sure this will be a big break through not only for you but all those people who are tired of using needles and want to switch to combination of oral chelators :thumbsup .
Zaini.
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best of Luck lena...I hope you can say bye bye to desferal. with low dose of Exjde, it does not have much side effect. so, hope you have the same good experience.
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Best of luck Lena.
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Thank you, Andy. Thank you Zaini, Bostonian_04 and Canadian_Family.
I am starting with 10 Ferrirprox pills daily - 20mg of Exjade and work on it further.We'll see.
Thank you all for your encouragement.
Lena.
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hi lena
good luck for you....
u take 4 pills of 500 mg ?
i take 2 times 1,75 g.
filakia panos
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Efxaristo(=thanks) Pano,
I take 1,250 daily. (1X500)+(1X125), twice daily.
Take care,
Lena.
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A question to people on exjade:
first of all I would like to state we have split the dosage in two. According to studies, exjade is not so strong as first believed to be and it is considered now best if the dosage is split twice daily. Thus you get a round clock chelation.
So, I am taking it early in the morning, then eat breakfast after half an hour and then take it again in the evening and 2-3 hours afterwards I eat my dinner. Is that o.k or should I get exjade 2-3 hours after dinner, before going to bed?
Another thing is the vit.c. We have raised the question of when is right to get vit.c but we have talked about desferal. But what happens with ferriprox-exjade combination therapy? In this case, I think, it is o.k if the vit.c is split in two as with these two chelators you get chelation all day long.
So there is no question to get the vit.c when starting the pump as you don't have one.
Of course, I suppose you people on exjade, get vit. C, don't you?
Any other piece of advice is welcome, too.
Lena.
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Technically, desferal is the only chelator that was ever studie with vitamin C use, so most doctors won't recommend using vitamin C with Ferriprox or Exjade. ApoPharma has been clear about this when I have talked to them. Even though it may seem safe, because there has been no study, the official word is they can't recommend it. Personally, I have no trouble recommending vitamin C to thals in doses up to 250 mg daily. Also, because vitamin C washes through the body rapidly, I suggest splitting the dose in two.
I am not surprised about this new advice for taking Exjade twice daily. The half life issue was always a bit shaky, and the 24 hours coverage was not the maximum coverage that it could be if the dose was to be split in two. Also, we may very soon see amendment to the prescribing information for Exjade to allow its use with meals, so I don't think there is any problem with the way you are taking it, Lena.
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Hi Andy,
Splitting the exjade is a new idea I just read, I think it is great since a lot of kids are having stomach problems with exjade. Splitting may help them overcome these problems.
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Why is Exjade once daily? Because Novartis interviewed patients and asked them about a once daily chelator. Too simple. Of course everyone will say yes, but if they phrase the question, what about a once daily chelator, but the price you pay will be in your stomach, whereas twice daily with half dose will reduce stomach upset, which would you prefer? But they were so focused on the once per day, that they didn't really think it through. As I mentioned, the half life does reduce the effect as the day passes, and by the end of the 24 hour period, the chelating effect will be greatly reduced, but if it is taken twice daily, there is no increase in dose, but most likely there will be an increase in overall chelation, just as there is when you take a dose of desferal for 18 hours instead of 12 hours. The same dosage provides added chelation by stretching the dose out to ensure more of the 24 hour period is covered. Every doctor at the conferences stress that the goal should be chelation 24/7, and that was a strong hope with Exjade, but if half the dose is washed out in less than 24 hours, how much chelation can really take place during the latter hours? Splitting the dose in two will give a longer chelation period and may even have the potential to eventually lower the required dose for patients on maintenance dosing (maintenance dosing should be the goal for everyone using chelators).
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hi lena
since abouth a year i take green tea caps. plus 80 gr vitamin C
i take 2 or if i use IV desferal 3 times a day......
they help me to reduce the foodiron and gave me the vitamin C i need.
filakia panos
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Thank you Andy,
you once again answered my questions.
My doctor said that if I experienced any stomach problems, switch exjade intake from before to after breakfast, considering that my breakfast is very light. But up to now there are no stomach troubles for me--hope that continues to be the case. You said, they are considering to suggest taking exjade with meals-that would be a very good idea because it would be much easier to drink it as an apple juice together with meal, let's say.
And of course you are right, the longer the chelation, the better the outcome. I will also stick in taking vit c in two doses, that seems better, as now with two oral chelators I practically get chelation all day long.I have, though, taken the initiative to start with a lower exjade dosage and gradually raise it to what my doctor has suggested.
Pano,
I have rejected the idea of using any more supplements as my ferritin level can do without them.
Thanks for the suggestion, though.
Everyone, please, bear with me, my considerations and my constant questions. I promise to bring them to the lowest limit... :dunno
Lena.
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Lena,
Your input and questions are of much help in guiding others, especially since you are often pioneering new directions in managing thalassemia, and your results are of great interest to all, so please don't even think about not asking all questions. The questions posed are what drives this group.
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Thank you, Andy.
:lovethissite
Lena.
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Lena,
I am so late in wishing you the best of luck, but i hope you are doing well my friend. Please check the kidney and liver funtions (at least monthly) until you are totally sure that the two chelators togather don't affectthese organs in particular
manal
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Manal,
thanks a lot for your wishes. Yes, some tests are in order now. Luckily in my Unit they keep a very close eye on these so I only have to worry whether exjade will suit me and have a good outcome. For the time being I am on a low dosage but from tomorrow I will raise it to what is normal for me.
Take care,
Lena.
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This would be really really great if kids can take exjade with meals,because finding time through out the day when the stomach is empty is getting very hard,because of schooling and everything,IP6 is also to be taken on empty stomach so right now its almost impossible for us to think about splitting the dose of exjade,if it will be allowed to be taken with meals,that will solve the problem.
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Zaini,
now that I am personally involved with exjade I try to think alternative solutions to ease things.
What about taking it in the morning(first dosage) and 2-3 hours after dinner before going to bed(the second one)? I am telling this because we have now established that two dosages are better than one as far as chelation is concerned. I think it is better to give priority in splitting exjade than being concerned how to take IP6. --- my humble opinion ---
Lena.
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Thanks for your opinion Lena,it means a lot :hugfriend I guess i'll start splitting the dose after Z's upcoming ferritin test next week,so that is there is any fast drop in future,we'll know that dose splitting made that difference,another thing,she is taking 600 mg Asunra right now,and we get these here in 1 tab of 400 and 2 tabs of 100 mg,would that be ok if i give her 400 mg at one time and 200 at the other? Or should i ask Novartis to let me buy all 100 mg tabs?
Zaini.
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Zaini,
my guess is that you should equally split the doses....is it too difficult to get 100s from Novartis?
Lena.
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All this splitting got me wondering, what about Ferriprox?
It's just that everyone is talking about splitting Exjade, and aren't really talking that much about Ferriprox.
(Im 2 lazy to search, in case someone already wrote about it :p)
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One problem with Ferrprox and this is pretty big, is that it isn't approved in North America. For those with access, it is not always the best chelator for their case. All chelators have side effects and there are those who still cannot find a suitable chelator and have to deal with significant side effects. This is a major reason we still need more chelators. Starch desferal would solve the side effect issues for many patients and make chelation much easier for many people, but there is no money going to support this drug's journey to approval. I still feel very strongly that no chelator works as well as Ferriprox in removing iron from the heart and brain and that there is no excuse for it not being approved in the US, but I am not the FDA and I am also not a corrupt bureaucracy that responds to the big pharmaceutical companies, while suppressing drugs from small companies. Am I saying the FDA is corrupt? Did the sun rise this morning? Do I see ad after ad on television, promoting drugs that have serious side effects, including suicidal actions and death? Do I wonder how these dangerous drugs are approved for things like birth control and stopping smoking, while also posing a risk of death? Yes, I do wonder how the FDA approves these drugs, yet leaves thal patients to die, because the company making Ferriprox just isn't one of the big guys.
And just a point of information; Ferriprox is split into 3 daily doses.
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I wonder if Starch desferal would run into the same kind of approval-trouble as Ferriprox is in, if it even reaches that far!
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Ironman,
The only reason I have not mentioned ferriprox in detail is that I have been taking ferriprox for the last 7 years and it is something of a routine to me now. As Andy, I strongly believe ferriprox is the most necessary chelator nowadays, for after its circulation deaths due to heart problems have been diminished between thals. It is a pity that some of the thals cannot benefit of such a good drug or that some others experience side effects and cannot take it.
Exjade is the newest chelator and we are all still learning. If you ask me, exjade alone is not much success and it would be better to combine it with ferriprox or desferal. Of course, this is only my opinion. And yes, ferriprox is split into 3 -not necessarily equal- daily doses.
What is your chelation schedule?
Lena.
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Zaini,
my guess is that you should equally split the doses....is it too difficult to get 100s from Novartis?
Lena.
I don't think it should be,i'll ask them next time i buy Asunra.
Zaini.
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What is your chelation schedule?
Desferal & Ferriprox... And loving every minute of it!
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I am glad you enjoy it...especially the desferal part! :rotfl
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I am glad you enjoy it...especially the desferal part! :rotfl
How can you not love it!
Ever heard of a person dying of a tiny needle? (Ok, they do it in prisons in USA, but that's cheating!)
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I have heard of people dying from not using that tiny needle.
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I have heard of people dying from not using that tiny needle.
Oh I know you love 'em too Andy...
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The difference in attitude can mean everything. Kocher, as long as I've known you, you have been quite confident about your abilities and have kept a good attitude towards life. The trade off of a little needle prick, balanced against life itself is a no-brainer for one with your attitude. But for those who can't see the positive and see no real life for themselves, that little needle becomes a daily dagger that they choose not to jab into their body and extend what they feel, is a worthless life. I hope our group can make a difference in shifting people more towards this attitude that it's a just tiny needle.
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A simple way of shifting people's attitude is telling others what thals have reached so far.
Maybe people could share(in another thread) what they have done despite the needle.
Some of the great people in here weren't born great or smart or strong or funny ect, but are normal persons who wouldn't let thal stop them in reaching their goals/dreams.
All thals can be great, why not give yourself a chance?
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Maybe people could share(in another thread) what they have done despite the needle.
Kocher,
that is a good idea. Why don't you start this thread yourself and see if others follow...
Lena.
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Kocher,
that is a good idea. Why don't you start this thread yourself and see if others follow...
Lena.
Hehe I am good at giving ideas, not bringing them to life... :P
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A question here:
What about Exjade and blood thinners?
Is there any danger when on both?
Lena.
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The only mention relating to this is
Gastrointestinal irritation (ulcer, bleeding) may occur during Exjade
treatment. Use caution in patients who are taking Exjade in combination
with drugs that have known ulcerogenic or hemorrhagic potential, such
as NSAIDs, corticosteroids, oral bisphosphonates, or anticoagulants.
This would apply to certain prescription drugs that have known serious side effects. This would not apply to vitamin E or aspirin.
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Thank you, Andy. That makes me at ease, cause aspirin was what I had in mind. You see, because of spleenectomy I take a drug named "salospir" which is really an aspirin.
Lena.
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After reaching a low ferritin level (68) my idea is to stop exjade - too much risk... what for, really ?
I'll continue with ferriprox alone and...see what happens.
Lena.
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Lena,
I think it's a good idea to use just Ferriprox at this point. I think there are too many unknowns about long term Exjade use to justify using it when your ferritin is so low. The once per week chelator would be ideal for those with low ferritin...if it was ever to get funding and make it to the market.
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Thank you, Andy. I have contemplated on this for long and I have reached this decision. What for, really? so much risk for what? I hope I can maintain the low ferritin level with ferriprox alone. If not, I will reconsider the case but I think I will not return to exjade at all. "Value for money" or "no value for money"? I think the second one.
Thanks again. I always appreciate your opinion.
Lena.
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Lena,
I realize the thalassemia community has been very high on Exjade, but more and more I have my doubts about its long term prospects. I also realize that Novartis has had a large role in shaping public opinion of the drug. I do have many doubts and while I think Exjade is a good choice for many patients, I don't think it can be looked at as a lifelong drug. Alternatives are needed and even though there are currently three chelators, it is still not sufficient.
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I know what you mean, Andy.
If you ask me I consider exjade to be a failure and much too risky.I was very reluctant at first to state my mind openly here but since you mention it, I'll second that. For me, desferal and ferriprox is the top combination - fast, safe, with good results.That's that.
Lena.
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Andy, Lena
What are your concerns about exjade, why do you think it is not a life long?? Isn't ferriprox and desferal have their side effects too???
Should normal kidney and liver functions be the criteria for deciding whether the chelator is working safe for the patient or not :huh :huh
manal
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Manal,
First, I should mention what I have said many times. No one should plan on using the same chelator for a life time because all chelators have long term side effects, and it's advised to switch chelators at some point.
As far as Exjade, with every new update, we hear about new problems with Exjade. I recently posted the latest about Exjade at
http://www.thalassemiapatientsandfriends.com/index.php?topic=3390.msg34628#msg34628 Some items of note:
(Exjade)... may cause renal, hepatic and gastrointestinal damage...this warning indicates that deferasirox may cause renal and hepatic impairment and/or failure and gastrointestinal hemorrhage. Reactions were severe enough to be fatal in some patients....
"Expert thalassemia centers and clinicians have known about these risks before the warning was added to the Exjade label. Fortunately, most thalassemia patients are young compared to the older adults who had severe or fatal outcomes to Exjade use. However, in the thalassemia population, stomach and duodenal ulcers, bleeding, liver and kidney problems have been noted, and therefore close monitoring is suggested. Also fortunately, most thalassemia patients who take Exjade do so without these unwanted side effects."
These are the type of problems that only get worse over time. In addition, we must pay attention to the fact that hundreds of older patients (mainly Myelodysplastic syndrome patients, who generally are older) have died while on an Exjade regimen. We do not hear this about the other chelators, in spite of various problems associated with these chelators. I don't think anyone should get into a panic, but I do think that older patients need to weigh their health condition, especially liver and kidney health, before starting on Exjade. As far as a case like Lena's, I agree with Lena that we just don't know enough about the use of Exjade at low iron levels to know how safe it is. Meanwhile, Ferriprox has a long established record and honestly, the deaths mentioned in the same breath as Ferrirpox are deaths that happened because Ferriprox was NOT available to the patients and not from using Ferriprox. Lisa was one of these statistics.
My other main concern is that patients in developing nations often do not have access to the close monitoring required with Exjade, yet the drug is being introduced into these countries with the full knowledge that monitoring will not always be what it should be. If the Big Pharma giant is going to introduce this drug into these situations, they should also open up their fat wallets to help the local treatment centers fully understand and fund monitoring compliance.
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Manal,
your questions are logical, that's for sure.
I 100% agree with what Andy has said. I'll also add I am very reluctant to exjade use although I have really tried to be optimistic about it, in some cases I have tried to persuade my own self that it is a new drug and we should not be overreacting in our judgement about it. But I have also seen it is not successive as a monotherapy(which is what Novartis wants for exjade use), and as to combination therapy we have been trying a much more successful one over the years with no side effects - that of ferriprox-desferal. Last but not least, in low ferritin cases like mine, why use exjade with its many side effects and not stick to ferriprox (proven ideal) or even ferriprox together with desferal (once in a while)?
Lena.
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Thanks Andy and Lena for your replies :hugfriend,
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Hi Lena ,
How r u ? i hope that everything is running fine at ur place in treatment and every aspect ... best of luckk . :goodluck .... u're doing a great job .. wish u all the best for everything :) .. take good care of ur self ..
Best Regards
Umair
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My daughter has been on the Exjade and Desferral combination for the last six months as adviced by the doctor. Her Ferritin level has come down normally (nothing extraordinarily) and there has been minor side effects as rise of SGPT and SGOT for which I had to stop the Exjade for few days. The doctor had adviced me to administer Desferral for 6 days/week along with Exjade @ 30mg/kg. She is just 4.
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Thanks for your input, Dey. This is very helpful for other parents who are looking for a solution to stubborn ferritin levels.
I hope people are mentioning the results of the combination of desferal and Exjade to their doctors. There have been many patients having great success with this, so please bring it up with your doctors if you are having trouble getting the ferritin down with one chelator only.
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Hi Dey,
For elevated SGPT levels,try splitting the dose of Exjade in two,it helped in may daughter's case,her SGPT was also high.
Zaini.
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hi every body,
i want to vote against combination bet ferriprox and exjade cause this will be a big load on GIT, liver and kidney.
but i am with combination trials between exjade and desferal.
only i wanted to say my opinion in this issue
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Hi Maria and welcome to the site :biggrin
The doctor didn't encourge this combination cause there are no studies on using both chelators togather. Many doctors too are against this trail because both chelators have the same side effects so they think that you are doubling the side effects.
In spite of this, some patients try this on their own, but i don't know any except what Lena (our dear member on the site) reports about a young girl who use this combination ad she is doing well.
But i think you should follow your doctor advice because you should be closely monitered in terms of white blood counts, kidney and liver functions.
Regarding your T2*, i should be honest and tell you that this is really alarming and you should act immediatly to stay above 20 in order to be in the safe zone. The best way to help change this reading, is by using IV desferal 24/7 for a while in combination with exjade or ferriprox. But ferriprox will be better since it is the best chelator for the heart
The MRI is a little elevated but definetly will be lowered by using the combination. What is important now is to concentrate on lowering the iron in the heart and i advice you too to follow up with a cardiologist to keep you monitered until the heart is clean from iron
Also I advise you to be on antioxidants to help you reduce the damge of the organs. IP6 is considered a natural chelator in addition of being an antioxidant. Also Vitamin E from a natural source (d-alpha tocopherol) is proven to reduce the oxidative stress on cells and studies showed that taking up to 600mg daily of vitamin E is very safe
Manal
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Dear Manal,
Thank you for the answer and for the advices. :hugfriend
I know why my doctor tell me "no" and I really do know that the best for me is ferriprox- desferal combination, but there are many things that make me to want ferriprox – exjade combination.
Yes, I’m little afraid about side effects, but I’m optimistic too. Will see … :biggrin
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Hello Maria,
Welcome on the forum,I will totally agree with Manal,combination of ferriprox and Exjade should be taken under doctor's supervision,coz you'll have to monitor blood counts,serum creatinine and liver functions etc,and if you have had any liver problems already,exjade might not be the best choice.
What i don't understand is why was your ferritin elevated after IV desferal,were you not taking ferriprox along with desferal ?,and it seems like you are allergic to desferal? Was that only IV desferal or sub q also gives you these symptoms?
Zaini.
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Hi Zaini,
I’m totally agreed with you and Manal, and I will have doctor’s supervision. I’m crazy, but not so mach :shy
About desferal: nobody can tell why, just happened. I have problem with all kind of administration - no matter iv or sc, no matter of dose, no matter of 8 – 12 – 24 hours. I can accept the allergic reaction (somehow), but I can’t accept that my blood pressure goes down to 50/30… So the desferal is not my chelator.
In this moment my chelation therapy is Exjade - 31,25 mg/kg . I can go on only with Exjade, but I want to see some results this year, not after 2 or 5 years… So I think of only to combine Exjade and Ferriprox…
And thank you all for kind attention. :ty
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LactaCaramel,
I have just seen your mail and definitely I have a lot to advise you since I have been on the Ferriprox-exjade combination therapy for two months. Although my ferritin was low( around 100) I decided to give it a try as I wanted a break from the pump. When on ferriprox-exjade, I had not one serious side effect (no rush, no stomach problems except for slight stomachburn which was resolved with a stomach pill, no elevated creatinine, no side effect on liver or kidney whatsoever). Of course, I have been taking it for only 2 months together with ferriprox. The ferritin went down from 113 to 68 and then I decided to stop exjade (inspite of my doctor's advice to continue). I decided to stop it, as I estimated that the risk I was undertaking was too much considering the benefit.So I voluntarily completely stopped exjade.
As for you, although your MRI results are alarmingly low, I would be very reluctant to advise you in favour of ferriprox-exjade combination therapy. Others would say 'yes' to that, as your iron burden is too high. But as long as your doctor is against it, I am afraid you can do nothing about it.There is no protocol, no clinical trials for this combination, so it depends on the doctor to advise it. Most doctors do not.
There is only one thing I want to underline to you:
With exjade only, it will take you too long to lower the MRI results and time is really pressing.
On the other hand ferriprox is necessary to you because it is cardio-protective.So you have to be on ferriprox. Ferriprox and desferal together is the ideal combination. Maybe you should re-try desferal and work with your doctor on your pressure problem.You may lower the desferal dosage and increase the frequency in a week.
Good luck,
Lena.
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Excellent advice Lena. Thank you.
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Maria,
I didn't have time to comment much earlier. As far as I know, within our group, only Lena and Panos have any actual experience using the Exjade/Ferriprox combination. I will say that both had positive results, but two people is not much to go by in terms of the safety of this combination in general. So this becomes a potentially risky undertaking, as everyone has pointed out, if not closely monitored by your doctor. Manal, Zaini and Lena have all provided good information and I hope you do listen to the advice about antioxidants also, as this is very important for protecting your organs in the face of a high iron load. Your ferritin is now under control and even though your T2* score is a serious eye opener, you should take some comfort in knowing that once the ferritin has been lowered, Exjade works much better at reducing the iron load (but not as well as Ferriprox in the heart). I don't know if a return to desferal would be advised, since your previous experience was quite negative. Honestly, my preference here if only one chelator is used would be Ferriprox. Your heart has a high iron load. Ferriprox is best for the heart. In addition to removing iron from the heart better than the other chelators, as Lena mentioned, it has a cardio-protective effect.
I will totally agree with Lena. You should be on Ferrirpox first.
I do have a question. Is your liver reading a T2* also, or was it an MRI? I ask because the scale for T2* and liver MRI are very different.
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I am at a loss here, Andy.
Isn't T2* an MRI score? What do you mean by" liver MRI"?
As for Maria's chelation scheme, returning to desferal would be a little painful, that's for sure.
However as much as I believe Ferriprox is the first to consider taking, I do not believe that a ferriprox monotherapy is suitable here. I have mentioned it before: after one year of ferrirprox monotherapy, my heart got much clearer, but my liver got a little more burdened with iron. No big deal, but this shows monotherapy is not enough. It needs something to add.
Lena.
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A liver MRI, such as you with Ferriscan, will give an estimate of iron weight as mg per gram, just as a biopsy will. With this, the lower the weight, the better. A result under 7 is considered to be the safe region. With a liver T2*, which also uses MRI but a different measurement technique, the score is similar to that with the cardiac T2*, so the higher, the better.
The normal values for T2*
Heart 5216 ms,
liver 337 ms,
skeletal
muscle 305 ms,
spleen 5622 ms.
These are for normal subjects with no iron load. 52 may be a normal score for the heart, but above 20 is considered safe for thal patients. A liver T2* below 9 indicates iron overload.
I found this posted from the recent Berlin conference on the TIF site.Ferriprox produced more than double the rise in cardiac T2* score than desferal or Exjade. There is no question about its superiority in removing heart iron.
IMPROVEMENT IN THE GLOBAL HEART T2* IS SIGNIFICANTLY GREATER FOR DEFERIPRONE IN COMPARISON WITH DESFERRIOXAMINE AND DEFERASIROX GROUP
It does affect the advice, so knowing what this low score represents is essential. A liver MRI of 2 is very good. A liver T2* of 2 is very bad.
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Totally agree with Lena,and i would like to add,unless ferritin is within normal range,i don't think any kind of monotherapy is enough,Its been over an year Z started exjade,and we were able to reach her full dose just for a couple of months may be,because of her elevated SGPT levels,we lower the exjade dose,SGPT went down,we increased exjade,SGPT went up.after splitting the dose,her SGPT did go down in normal range,but then i increased the dose just by 100 mg and her SGPT has started to rise,not too much,it was 45 checked today,but this raises the question again if we'd be able to reach her max dose.So i was wondering how awesome would that be if she can take both ferriprox and exjade at the same time,ferriprox will not only help lower her ferritin,but it would also keep her heart safe.
Doctors here aren't ready to use desferal with exjade let alone ferriprox,and another problem that frustrates me is that doctors aren't ready to take her ferritin readings seriously,1100 doesn't seem to them too much,and i am unable to make them understand that i want my daughter's ferritin to be in normal ranges,this seems like impossible to them, :sigh.
There should be studies done on these combinations,or starch DFO would be great too.
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Zaini,
I often think about you and little Z's case - what with using exjade and all - and I would like to be frank about things but then I realise that you don't want to quit exjade and keep my mouth shut.
Anyway, your doctors seem to live in the previous thalassemia century and the fact they consider any ferritin round 1000 to be normal is very irritating. On the other hand, I don't know what I should do if I were in your shoes...really. How to convince them??? I don't know which is the best way to tackle an ignorant doctor....Sorry for being blunt, it is irrititating to see a doctor blocking the patient's wellfare.It may happen anywhere in the world.
I don't believe in monotherapy and especially exjade monotherapy. Even desferal monotherapy which literally saved us through years, proved to be inadequate for heart protection. Let alone exjade which, day in day out, loses its credibility as a monotherapy potential drug in thalassemia.
Lena
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As some of you know I went back to deferiptone this week. Suddenly I understand why I quit with.it. Lena, how.many.of each did you take? does there exist amy data about this? Maybe is this the future I need...
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Lena, I am very interested in this combi therapy. Do you have any more information availalble? For example how much of each or any idea how I can come in touch with your doctor? I would like to have more information about this before I want to ask my doctor about it.
As some of you may know I quitted Exjade last week, but once again I come to realise ferriprox is also not an answer for my ferritin issues. It's just a mess. My ferritine rised over 2000 already.
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Dori,
why did you go back to Ferriprox? I missed that.
You can take Ferriprox depending on your kilos. The type goes:
kgs X 75/500 (smaller dose) or
kgs X 100/500 or kgs X 120/500 when on monotherapy (highest dose. I do not recommend it)
I can give you my doctor's mail in a private message, Dori, so you can ask her whatever you want providing full details of your chelation treatment.
Lena
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If you could to do that I would be very happy Lena.
When I told my doctor about my kidney pains he told me to restart deferiprone. Now I think my month long treatment with diclofenac has also something to do with. He diagnosed me with bursitis last week. I did not we had things like this. That such a tiny things can create cruel pain. But I know deferiprone alone would not be my solutation to tackle my fe.
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Hi everybody,
i would like some advice on combi therapy Ferriprox-exjade.
Unfortunately i am too sensitive to exjade and after it clears the iron load on my liver the creatinine goes up and i cannot manage it anymore even on a very low dose. On the other end ferriprox alone keeps my ferretine very low, heart clear but the iron overload in the liver went from 1.9 to 9.8 in the space of less then a year. so i started exjade again and cleared it up in 6 months.
Now i have to decide between ferriprox - exjade (5 days ferriprox 8 tbs a day and 2 day 1000mg exjade) or ferriprox and desferal. I would be keener on the first.
Can anyone tell me any real side effect and exjade- ferriprox combination.
Thank you very much for any help that you could give me
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Hi Astrid,
The combination has not been studied widely, but there have been no further side effects noted from using combination of Ferriprox and Exjade. I think the fact that you are not planning on taking them on the same day will help to minimize the side effects of each drug in general as neither will be 7 days a week.
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Hi Andrew,
thanks for your reply... i will start the combination in a couple of weeks and fingers crossed it will be ok :)
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Astrid,
My son was on exjade/desferal therapy for a year and it worked wonders for him. He is currently on exjade alone. I expect that exjade/ferriprox combination will yield good results - I hope that you do not experience any negative effects. One piece of advise I have is to begin slowly, at a low dose. I find iron accumulates quickly but seems to decline slowly. When beginning a new chelation plan - whether with a single drug or combination - it is best to start on a low dose, and if well tolerated then to increase as needed.
Best of luck,
Sharmin
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thanks Sharmin i really appreciate your advice as it is a bit of a new thing and there are not other people where i am at the moment with whom i can share my concerns.
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Astrid,
has your doctor suggested this kind of chelation therapy or you decided on your own? I think I have read a clinical trial in Italy on ferriprox-exjade combination therapy. Is that true? and which were the results?
Lena
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Hi Lena, I haven't heard of it. At the moment I still take only Ferrirpox and my fe levels stay stable at 2000. But from monday it will increase as I am going to receive 4 units of ery's in a very short time to fix my crashed hgb level. The fun of a hemolytic crisis.
Good luck Astrid. Please keep us up to date. It's a neat plan of chelation, I must admit. :)
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My levels are between 2600-3000 now and I started with this combination therapy at friday. first dose of Exjade with it was way too high and now I take 250mcg tablet at night. But I am stilll itching. If this does not improved in a week I might go to 125mcg. We'll see what happens. Hopefully I can tolerate it and it starts working too. Thank you all for your help. Without you I would not know that this would be possible! (today is sunday)
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There again, fresh start with Ferriprox-Exjade combination therapy. Starting on a very low dosage of exjade (half the required dosage) and the utmost dosage of Ferriprox given on monotherapy.
I only hope there will be no side-effects.
Lena
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Good luck Lena. I too hope you see no side effects. I think that eventually, we will see doctors recommend that all patients strive for ferritin levels like yours. I truly believe normal to low ferritin should be the goal in transfusing patients.
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Thank you, Andy, for your kind support. You have always been there.
Well, I think so, too. I believe that ferritins at the level of 500 should be past history. I know it sounds absurd but this will be the future in Thalassemia. I start with 147 right now and let's see how it will proceed.
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Best of luck Lena, i definitely believe having iron levels below 100 is the key
To good health in thalassemia. The risk of iron accumulation - especially the liver would be minimized if iron levels are normal - along with endocrine function and immune function.
Your compliance and diligence definitely sets the precedent for others and should motivate them.
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All The Best Lena,
Happy to know it's 147.
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Thank you both for your kind words. I wish the best for you,too.
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Hi Lena,
Have u had ur T2* MRI ?
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Yes, of course, last May. I have an MRI every year.One of the routine exams of the year.
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Hi Lena,
You will be starting at the lowest level with Exjade won't you? My youngest had that episode with Exjade as he was on maximum
dose for his weight.I started him on the lowest but he was told to take maximum from the start. May have worked for him if he stayed at a lower dose as a doctor who specialises in thal later told us that he was taking too much Exjade. His ferritin was also 147 when he started. I'm worried if he is told to start it again.
I hope it all goes well for you.
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Yes, of course, last May. I have an MRI every year.One of the routine exams of the year.
And , I assume it is clear, right?
Would u please , share the scan result? :biggrin
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Hi Emby,
well, if your son started with a high dosage of exjade, it should be realistic why he has those side effects. My doctor gave me now 10mg/kilo and in the future we will maintain the 15-18 mg/kilo dosage for me. if all goes well with the exams, that is. We'll see.
Hanumant Aashrit,
yes, it is clear as follows:
T2* heart 31, T2* liver 27, LIC 1,1.
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:yahoo :flowers :stars :yaaaaaay :congrats :bigparty
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Hanumant Aashrit,
Really... I myself think I could do it better.
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Hi Lena,
My son did not start with the high dose...his new consultant said he should...but it was new med for him and it made sense to me that he starts at a low dose so I started him on the lower dose..after a month or 6 weeks I increased it a little, then about 2 months he was on full dose. I dont think his consultant is in line with thal treatment. Another doctor was called in after all that happened with
my son who knows well about thal, said that dose was too high. He should have maitained at a lower dose. You are very lucky to have the consultant you have and I can tell that you steer the way for your treatment..you know whats good..for you :-)
Lena, I posted a question on another post...can you help me please. Both my boys Bone Density Scan show the bones to be weak but they have only been given Vit D. The younger one was given 30000iu a day for 6 weeks and now is on a maintaining dose, 2000iu, and my older son has only been on a maintaining dose the same as his brother but his report came back showing osteoporosis. Both their vitD levels are about 90. Both are very well . Shouldn't they be taking something to help strengthen the bones?
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Hi Emby,
Sorry for not having posted earlier, I have just seen your post.
Well, I can only tell you this: Our doctors give us vit. D together with Calcium on a daily basis. Of course, if osteoporosis is severe, you need to take a special medicine. I think only vit D is not enough, let alone if you take it for some weeks only.
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Dear Andy and all,
these past 3 days I exprienced an episode of combination therapy of Ferriprox-Exjade toxicity, starting with myoclonies (=uncontrolabe hand fly) and lethargic situation. I went directly to the hospital and there they evaluated my neurological situation and let me go because they did not find anything. They sent me to a general practioner-pathological dept and there they diagnosed white blood cells 30000 and yesterday 40000 in spite of the antibiotics they gave me. Also transaminases were reaching SGOT 147 and SGPT 196, but after a liver u/s my liver, pancreas, kidneys were clear. They sent me home and told me to search for white blood cells increace through my Unit.
I start to think this is due to the new combo therapy I started a month ago. Have you heard any other patient having wbc increace because of exjade? I wonder.
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Lena,
I am sending your post to a doctor who has experience with this chelation combination. I will revert back to you once I get a reply. It may be that at your low iron load, you are using more chelation than required, but I will see what the doctor has to say.
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Lena,
I have heard back from the doctor already. I explained about your low ferritin and that your heart and liver iron levels are under control. He had this to say.
She should not be on 2 with such low iron levels. The high white count however may be due to infection so it is appropriate that she take antibiotics. I have not heard of increased white cells with Exjade. She should just stay on Ferriprox.
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Thank you, Andy.
I agree with the doctor's saying. However I am adding another thought of mine:
Is it altogether impossible to see such a side effect of high white blood cells when in combination of ferriprox-exjade, as long as there are no clinical trials up to now for ferriprox-exjade combination therapy? It might be a symtom first shown up to the bibliography of exjade. This is what I think, and this because I have no fever, no other infection symtoms. By the way, my white blood cells have lowered to 25000 yesterday and I am on Augmentin antibiotics. Of course, I have stopped all chelation therapy and will keep that way for a month. No chelation at all, my doctor wants my body to clear up of ferriprox and exjade. After that, I will keep to the lower dosage of ferriprox, 75mg/kgr.
thanks again,
Lena
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I think that in your case, a chelation vacation can help. You may see a normalization in your white cell level and your iron load is basically non-existent, so a vacation shouldn't be hard to overcome once you begin chelating again.
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Lena,
Hoping your infection will clear up and that all of your numbers will be spot on after your chelator detox!
Sharmin
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Thanks Sharmin,
white blood cells now 20000 , only SGPT remains high and this is due to exjade definitely. One month away froma any chelation for the body to clear and SGPT back to normal and then rearrangement with only ferriprox, low dosage.
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Andy,
I definitely agree with you and that's what I am going to do.
Maybe Novartis should add the white blood cells increase in their bibliography. Maybe.
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Lena I'm so glad to hear that your WCC level is coming down to normal.. :kiss...and totally agree with you..there is much Novartis need to add on..
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Thanks, Emby.
I really am convinced now that the WBC raise is due to ferriprox-exjade combination therapy and if doctors have not met with that before, it's time to write a new symptom down in their agenda.
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I am happy to say that everything went back to normal. White blood cells, SGPT and SGOT of liver went down to normal after 10 days away from any chelation at all. Will remain off some more days and start ferriprox only, on New Year.
Everything is clear on my mind now, exjade started it all including WBC raise.
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That is excellent news Lena!
I think Exjade works best when ferritin is extremely high. It is quite an effective chelator for that reason alone I think and the fact that it is more widely available and easy-ish to take but at 'normal' level of ferritin or very low level, Exjade should not be given. I don't know how much research has gone into the side effects of Exjade when taken at low level ferritin though I do feel this chelator is not an 'all rounder'.
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Dearest friends,
I am happy to tell you that my liver scan was good and that my ferritin has dropped to 100!!!
Keep the fight and faith. You too will knock ferritin out! :cheer (and yes, I continue my chelation. It takes some time to figure out how much is enough. Does anyone has any thoughts?)
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That is excellent news Lena!
I think Exjade works best when ferritin is extremely high. It is quite an effective chelator for that reason alone I think and the fact that it is more widely available and easy-ish to take but at 'normal' level of ferritin or very low level, Exjade should not be given. I don't know how much research has gone into the side effects of Exjade when taken at low level ferritin though I do feel this chelator is not an 'all rounder'.
Emby should I quite Exjade now my ferritin is only 100?
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You should not be chelating at that low ferritin. You can begin again once it's above 300.
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Yes that is the advice our doctors give too, to stop chelation when ferritin is at such a low level.
My sons levels were that low too at one point but they didn't stop chelating completely.
They carried on with reduced chelation for only for about 2 days a week.
Congratulations by the way Dori!! So nice to hear from you!
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Thank you for your replies!!
Shall I try to keep it at 300? It may already be 300 as I did not hear my latests ferritin. I did not ask for it because I had not be so rightenous. But I passed all my exams :)
Would you advise to stick to Ferriprox rather than Exjade? (I would vote for Ferriprox myself)
How much mg/kg/day should I take?
Emby: chelation for two days a week??
I am sorry for all these questions but this is a complete new level of treatment for me. My liver specialist wants me to continue chelation to clear my liver as much as possible. I guess he is a perfectionist!
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Up to 500 is good and healthy with heart and liver being monitored yearly.
With Ferriprox, it is easier to keep the heart clear of iron but Ferriprox may not be the best to reduce liver iron so a combination of chelaters will be better till liver is cleared of iron again.
As your Ferritin is low perhaps you can switch to Desferal for a while till liver iron clears as Desferal is more effective on liver. I'm not sure if Exjade might work better, maybe someone will advise you regarding this. Even with Desfearal, you shouldn't chelate everyday as your ferritin is very low and monitor heart and liver to see progress/changes.
:heartred
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Dori, please check if it is okay to take exjade at low level ferritin. If you are not used to taking enough liquids/ not that used to drinking water alot then it may not be the ideal chelator.
Perhaps someone here may be able to advice better if they have taken exjade at low level ferritin and if it has helped to reduce liver iron.
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I have always been the proponent of stopping chelation at low levels (300-500). I floated this idea some years back and received strong rebuttal from some respectable members. Our daughter Little Miss A has had numerous vacations from exjade in the last 9 years or so and she is doing fine.
Best of luck Dori and keep healthy.
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Well done to Little Miss A and you as a family. :heartpink
It may be something to take into consideration the amount of blood being transfused per transfusion resulting on the decision to carry on chelating even if it is a few days.
Everyone dealing with what each one faces the best they can.
It's always good to learn about individual experiences. Still learning. Thank you Canadian Family.
:heartred
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I have always been the proponent of stopping chelation at low levels (300-500). I floated this idea some years back and received strong rebuttal from some respectable members. Our daughter Little Miss A has had numerous vacations from exjade in the last 9 years or so and she is doing fine.
Best of luck Dori and keep healthy.
Thank you Canadian Family. My latest fe report is much higher (again) so I must start with chelation (again). I just have a hard time with it. So I embrace the fact that your daughter has vacations. I think it is better - emotionally wise. Well, I will stay around and tell you how my chelation will work out this time. Happy summer! (Little miss A might not be so little anymore, isn't it?!!!) [I also posted a question about calcium treatment. Maybe you have some wisdom with me to share? :) Thank you in advance! ]
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Thanks for your kind words.
Little Miss A is turning 13 soon. Vacation from chelation should be done under doctor's advise. If it does not work in your particular situation, I would continue with it.
In general, we are all working towards common goal or removing excess iron.
Good Luck to all.
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Confession:
My fe is above 1000 and I need to restart my chelation soon.
I guess I need some motivation!
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Hello,
From the first of January only Exjade tablets will be on the market. The now Exjade line production stops. So my questions are:
How much mg/kg do you use for moderstor iron chelation?
How muhch Exjade dp you need when you use this combination therapy?
This combination therapy was officialy recognized and approved in the beginning of this year in my country!!!
Thank you!!