Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Dori on January 17, 2011, 03:40:33 PM
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I assume this is very against any law, but I am rewriting this topic once again. Last week I was put back on deferiprone. When I confessed that Exjade caused a lot of kidney pain I heard to stop with it. Although I know think the NSAID-treatment has something to do with it. I still feel sad about my confession as Exjade was just about to do the trick it is supposed to do. My ferritine has been rising since September 2010 and is already above 2000. Especially my doctor seemed to me concerned.
The weekend has been a bit of a blurry as I was battled high and uncontrollable pain (bursititis in my hips). I think everyone I must spoken to must have been a littly dizzy afterwards. I only told the whole story to a good friend of mine and together we came with a plan (she's from outside this world so she had a fresh outlook on things).
However, I have also come to realise that part of my trouble/fail is caused by stopping to visit these forums and be really part of it. Umair's great results have let me come back to this site to and I honestly ask you to endure my rambling and talk me back into it. If everyone of you is also a friend on Facebook, please spam me with all kind of messages to take my meds, my water and a positive outlook. By this I allow you to do so.
I am "slowely" building up a deferirpone regime of 3x 2 tablets. At the moment I take 3x1 tablet. A half tablet did not work for me. I became restless of it. I also must take my NSAID (diclofenac) 3 times a day, 1 tablet of omeprazol in the morning to start with, my CalciChew and my folic acid. And ofcourse my water..... (schedule?)
So please share all your suggestions and any other things you think of. Because I am going to need it a lot. I feel that some of my friends believe I am exxaggerating, but the history repeat itself. I have walked this path already three times. And that makes me scared.
To be honestly I do not feel I will be able to take deferiprone for a long time...
Thank you in advance,
Dore
Last few weeks I took 750mg of Exjade 5 days a week and 1000mg of E 2 days a week.
I have not had any real Exjade lab tests since August 2010 done (I think that is correct - atleast not in 2011)
PS below my original post.
Hello Everyone,
I have thought about it a lot and at the end I decided to share my story. I have repeated this message over and over in my head but here I finally am. It is written through my small breaks from studying.
At the age of 16 my stage of ferritin was recognized as dangerous high, and I started with chelation therapy. Aggressive chelation therapy. I took small doses of deferiprone since it came on the market but it was not enough.
At the end I received 5x24hrs desferal weekly and sometimes along with deferiprone (stopped with deferiprone due leg aches). On an autumn day I developed ulcers in my throat and I almost couldnt breath. Since that I evening I have never taken or giving it again.
Now we jump to Summer 10. I had to quit Exjade because of severe side effects. My liver enzymes were 5 times so high as normally and before that I vomitted daily. Never realized it was a sign of a bad liver. After a break of 6 weeks - I refused to restart it during my lovely first vacation in TR - I restarted at 1 September. The plan was 2 weeks at each new dose and then increase my dose. You might have read my posts about this time everywhere on thalpal. Thursday before Christmas I saw no other option than to quit again. That time I had no blood work done but I knew which problems it cause (over 10) and decided it was time to stop.
Last thursday, 13th January, I restarted. I have decided to give up agressively chelation therapy. I am afraid that if I do so I will become permantely allergic for Exjade and my biggest fear so that I cannot tolerate it any longer. So long as I take something I do have a (kind of) chelation.
(...)
I have faith there will be a new chelation medicine in the next few years and I am willing to wait. First I felt sad I had to take this decision, but now I feel comfortable with it. [From what I heard in Antayla, I would not be able to take this new medicine]
Dori
Pyruvate Kinase Deficiency
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Dore,
Do you also react badly to IV desferal?
Yes, desferal is not possible for me anymore. Although my pharmacy told me a few years later that my former doc may have prescribe desferal infusion with a too high concentration of desferal. (He said sometime like the doctor changed that) But since I have no proof, I have no idea and cannot show it to my new doctor. But nobody wants to try it again.
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O yes, I had itching too. Horrible itching. I also developed shingles. And they kept telling me it's an old ladies thing - I was 17yrs. When they inserted my port-a-cath my stitches fell out after only 2 days and the wound become infected and that's where I lost my first year of highschool. Since then I'd no choice but studying part time. The benefit is that you learn to know a lot of people. I was given SQ desferal when I was 4-6 years old but it unable to bend because of bumps.
http://www.thalassemiapatientsandfriends.com/index.php?board=5.0
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Yesterday I was at the Dutch Hematology Conference (Wednesday) and it was today and it end tomorrow. However, I happend to chat for a while with someone of Novartis. And they finally get it! It is now allowed, also from them, to take it in the evening and it doesnt matter if your stomach (of belly) is full of food. His own words were "When you take it in the evening you have less trouble of the side effects. So why not?" Duhhh!
So yes, I finally changed my meds. Yesterday I took 2x 450mg and today only 1x450mg. Now it is going to be a lot more easier (for me) to take my supplements! When ll the xam are over and I got some time I will visit a very detailed vitamin store in Amsterdam (atleast I have high hopes).
He said more but I cant remember that. Ohyes, the doc next to him said "Desferal doesnt work while given after a blood transfusion. Huh? Ofcourse "What is the sense of MRI scans? We wont change our treatment when we know the level of iron". I quit and left.
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Wow. I am astounded. Desferal doesn't know if you just got transfused and cannot differentiate between old and brand new iron. It is simple chemistry. Chelators react with iron and fix iron, so it can be removed from the body. When and where you got the iron is irrelevant. And the MRI talk? OMG! That is EXACTLY how it is determined if a patient needs to change the chelation routine.
Wow. I think this well demonstrates why patients and parents have to be as informed and educated as possible.
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Welcome to the Dutch way of approach these kind of diseases. Remember this was at the 5th Dutch Hematology Conference. This is the fight we are fighting every day.
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I have decided to open up this topic. It's necessary because I would spam your all. I will update my enterance with information.
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You are most welcome to do so Dori :) we are here to listen.
Zaini.
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I updated it but I cannot see it now. Probably not saved it.
I have decided to differently this time. Therefore I married my water bottle;) (I sometimes add a tiny tiny bit rose water. That's not bad, right?
I take only 125mg pills but later on 25mg pill at bed time. Times are 8AM, 1PM, 6PM and 10PM. With lots of water between. In that way I can take 500mg a day.
My ferritin has been moving between 1100-1300. In June 2010 it was 500.
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Dori,
Lots of water is really really good :) and i am sure it will help you eliminate the symptoms you were having,rose water ain't bad either,if it helps you drink more water its good :) .
Good luck :goodluck .
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I will post here.
I take Exjade now almost 3 weeks. I started with taking one tablet of 125mg at 8am, 12am, 6pm and 10pm. Since two days I take it all once after supper. However, I experience now already a month very painful joint. With very painful I mean I had to take pain killers during the nights when I had exams the following to get some sleep. Last night I had to take it too. Even when I am very tired I just cannot sleep because of the pain. Now I start experience also edema in my legs. Is this a common thing with Exjade? Is there anything I can do by myself? My knees also hurting lots.
I know I maybe should set an appt with my hem but I fear TIF's conference a lot. Also I am not going to stop Exjade because Exjade is my only option left. May excess free iron cause this problem?
Should I take lots of fluid and see what's happen? I have no idea and I would not bother any of my non-virtual friends with this. We've had a few scars the past days; some of them were very, very scary.
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Hi Dori
Sara had trouble with exjade is well. She also had joint pains and stomach pains. Now she takes ferrifrox, she seems to be doing well that, have thought about taking that? Its really hard when you develop all these symptoms. I hope it becomes easy for you.
Alia
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Hi Alia,
Although I long to ferriprox I do know it is not a solution either. I had to stop with ferriprox because I could not walk of it or very slowely and tiny steps. But I hope to return from TIF's conference with lots of information about the combination therapy of Exjade and Ferriprox.
I am glad your daughter could make this switch. How's her fe level now?
Warm wishes,
PS I am happy to report I have no stomach pains.
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And now I am back on deferirpone. Please read my first post as I have rewrite it and give your opinion. Thank you in advance.
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Dear,
Before starting or dis continuing exjade,all the proper tests needed should be done,only that way you'll know if and how or why exjade is giving you trouble,and you said so yourself that no testing was done to determine that.
I know it must be hard to keep track of all these things and its annoying to get poked again and again and sometimes still not knowing what is the cause of all the pain you go through,but you have to keep going.
Fropm now on not only take your vitamins and water,but keep taking the tests that are compulsory with any medicine you are taking,be it exjade or defriprone,i believe defriprone gave you joint pains before? And you say you react to desferal?but have you vere tried it doing yourself,i mean mixing it with more water,making it more diluted and taking an anti allergy with it? think about it,its been a long time and you might be able to give it a shot again,because defriprone alone is not that good for liver iron.
I am sorry it took me long to reply,but my house is a mess right now because of reconstruction and too much stress and no exercise has not helped at all either.
Hope this helps.
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Dori,
I'm so sorry you have to go through all the pains. We are here to listen to you. Are the joint pains, hips etc the same intensity between Exjade and Ferripox? Which is lesser? Should you get another expert to look at your joint pains? Could it be unrelated? Are you saying your hip pains are renal pains?
And yes, you should do monthly blood tests for liver and renals [we do prior to transfusion] with Exjade. Did the liver enzymes shoot up to 5 times the level immediately or progressively?
Please don't be too hard on yourself especially on your studies, your health is utmost priority, of course, we still need to strive for the best in everything we do.
Your health cannot wait, other things can, Dori.
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Sorry, it took me time to start this writing. Thank you for your help. I really believe that part of the problem is that I left this group. I know I should have those tests, but things like that are a bit complicated.
It has been 8 days now and I think I have got myself for a good amount back on track. I added my vitamins again to my routins (I took it all month long during April - a record) and also tea with meals. I am also taking 3 times a day L1. They really should have offered my a butler to set up a nicely schema for all those tablets ;)
I have contacted a few more people to see wether or not Exjade/Deferiprone will be an option. And the really good thing is that today is the first day I have my pain under control. I am a bit scared I am going down to 2 tablets of diclofenac a day somewhere next week.
I have arrange a phone call with my doctor which will happen somewhere on Tuesday - any suggestions are welcome. As I had a lot of kidney pain during the week I suggest I must ask to repeat those Exjade tests. I wanted to complain about the still torturing pain but it seems that has settled down. Well, only if I do not move and walk so less as possible those stairs. And one should still be able to move a bit, not, so it might be a bit of concern. Also I must tell that I was yelling and crying of this horrible pain all weekend.
I was going through my very unorganised archieve (mixed sorts) and to my suprise I found a lab report from april, may, june 2009. Even then I had not such a high level of ferritine. When I did take my folic acid bravely my ery's went up. That really catched my eye.
Indeed, never lose hope. I will knock most of the iron out soon. I am happy I am in this state during summer. I love summer. I always say I was born in a wrong country - haha.
Thank you Syaida and Zaini,
-Dori
PS Zaini, have you been able to get some good Exjade for little Z? I hope so.
Desferal:
I have asked the pharmacy about this last saturday. Not any mention of a formule - so I have no idea. My pumps with desferal were prepared somewhere else (a local hospital?) but delivered at home by pharmacy. I let them go back to '00 but nothing was found. Since those records (hospital where I was mainly treated) went missing I have no clue. And so long as I have no clue, nobody will give it another try.
A quote I used today to start with my preparations for tax law (I am already hopeless behind my own studying schedules) was "A journey of 1000 mile starts with 1 step".
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I should not have written that about being painfree. It is again out of the roof.
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Let me tell you this. During the night or early morning I can studying very well and my brains are also very active, hehe. I realized during last night that infections hence your ferritin up. Now I wonder how much it will come down now during this course of meds. On the other hand, the level of ferritin says nothing about the amount of stored iron in one's body.
Totally off-topic, tomorrow I hope to find the power to go and see Fairuz singing in Amsterdam. I have no tix but they will put a screen up somewhere.
Dori
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Hi Dori,
How are things going on with you now. Are they settled, or improving? I have read your post, and want to share with you this difficulties. I don't know what to tell you to eliminate this, I only can wish you recover soon.
Souly
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Hi Souly, thank you for your kind words. Finally, I seem to have controlled this horrible pain :) Although I do not know why. Maybe it just take time for them to work. Or they reduced swelling over the last 1.5 week. I have no idea.
As for the chelation part: I am now up to 4 pills a day. I have not the feeling it is working but we'll seen. To my suprise I found out a couple of minutes ago that my next tanking up is at 5th July. Lab draws are at 4th July. So I'll continue my vegetarian diet until then. I know one earns more blood the other way round but this works the best for me. I hope to speak my doctor soon - but there's no particular date anymore - to discuss combin therapy of Ferriprox/Exjade.
Time to return to my law books. It is too hot for the Netherlands and it suddenly came up. I was not prepared. It is just way too hot. 35C+ and very stuff.
How are you doing Souly?
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Dear Dori,
I am very happy to hear the improvement you have made. That's a wonderful news.
Dori, I am not a patient, but a parent of my two E-beta thalassaemia. One of them receives blood transfusion every four weeks. He is 6 yrs old and on a exjade. Fortunately, exjade is working excellent for him. He started with feritin 1380 with fluctuation in between and three years later (now) his feritin is around 700. The other son has not received any transfusion. I hope that he can escape from this. Although I am not a patient, I understand everything the patients go through and the obstacles they have to overcome. I am thrill to see everyone problem and I admire this platform for the sharing of useful information. I am not the active member, but I read through almost all and every post here. I am in a developing country, therefore, the medical care is far below the standard that I have to face. However, I encourage everyone here to have hope. Explore new possibilities to fight against this disease.
Again, I wish you all the best in your exam.
Souly
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Thank you for your kind words. I am happy to hear your son was able to decrease his level of ferritin so much. Keep the good work going on! I too hope your other son can escape from it. But remember, if it has to be happen, with two it is more enjoyable to sit in a hospital. That was probably very ugly English. It is so hot here, that it is a battle to keep studying going on. They expect storms but the sky is here still completely blue and almost cloudless - but there is a little wind :) It's over 36C outside.
I do not know where you life, but I do know (for example) how hard it is to life in Kenia and have a hbpen.
Thank you once again. How old are your sons if I may ask?
-Dori
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Dear Dori,
I am sorry for not replying sooner as I was away. My elder son who is on hyper transfusion program is 6 years old and the younger son is 3 and a half years. I wish everyday that they both can avoid the transfusion. Luckily at least for now, the younger has not gone through it. Dori, I live in Cambodia where the knowledge as well as the information about thalassaemia is ignorant. When this happened to my elder son three years ago, I was not aware about the disease at all. The Ministry of Health seems not aware of this, and therefore, it is not on the priority list of its agenda. Recent test shows that the prevalent is about 30% carriers (basically similar to that in Thailand). That's why I have established the Cambodian Thalassaemia Association (it is not a member of TIF). Its purposes are to disseminate the information and the knowledge to the public. It has been working with the MOH to draft a guideline for thalassaemia treatment (it is now in the final stage to be approved by the MOH ) through which it will help dozens of thousands of poor people across the country. My personal purpose is to not let other people have problem like me. I have to bear all the costs related to treatment including the hospital fees and medicines.
The weather in Phnom Penh (the Capital of Cambodia) is around 30-35 too. It's in a rainny season, so it is expected to rain almost everyday.
How is everything with you now?
Souly
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Dear Souly,
Although I should learn about the spelling I do know it is the capital of Cambodia. I have always loved geograpy. Vacation started, I said in another post. I now remember I still must write out my notes from Antayla. I remember there was something about Cambodia there too. In Dutch we say Cambodja, isn't it?
What is the MOH?
Congratulations on all you do and please keep us up to date,
Dori
PS I am tanking up next tuesday.
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Dear Dori,
MOH means Ministry of Health (To which I referred to the Ministry of Health of Cambodia). Another correction that I want to make from my last post was that The Cambodian Thalassaemia Association is a member of TIF (I said in my last post that it was NOT). TIF invited me as the Chairman of the Association to attend the conference in Antalya too by partly sponsoring some expenditures. Due to the budget constraint, I could not go. I have now applied for the conference in Thailand again (3-5 November 2011). I hope that I will be fully sponsored this time as the cost will be must less compared to that in Turkey. I wish you and others in this forum can go there as Southeast Asian region has very high prevalence and so many people are struggling to find the right treatment.
There are a few dedicated medical doctors, scientists, official from the MOH, parents and those who are very concerned about thal established this association. It is still young and have not done many tasks (although we have many task to do) due to the budget constraints. I hope that we can overcome this difficulty in coming years so that every patient and couple at risks can benefit from its activities.
Together, from every angle of the earth, will free this society from Thalassaemia major.
Souly
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Soouly, thank you for your informative posts. I love to learn new things and to see how it is connected and how not. I would like to go to Bangkok as I believe Asia as a part of the expierence. Also the very first (bone marrow) transplant) on PKD was done in Bangkok. If I may refound the article and the doctors names/hospital I would like to give them to someone who is going to Thailand as I have a few questions about it. This little boy had PKD along thalassemia and he is the not the only one. Let me try the other case...http://www.sltrib.com/sltrib/home2/52101940-75/jonah-family-gomez-verschoor.html.csp
Do you know by chance what sickle hemoglobin D is? Is it the disorder sickle celle disease (fully not a carrier?).
I had a blood transfusion this week and did lab work on Monday. With my dumby brains I could notice it shows sign of inflammation not particular infection. It is always difficult to remember the difference. I went in again on Friday has I had to do some particular tests for wednesday. I had to be there and I do not plan to be there twice this upcoming week. My hgb was pretty low (8.5) so I wonder how much my post-hgb will be.
Budget contraint.... the hotels always have many, many stars. I hope you really can go to Thailand!!!!
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you're a gem dori.
best wishes always!!!
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Thank you for your kind messages. It helps me to read them. I am very frustrated. I wish I could say it is a lie, but it is my truth at the moment. I wrote this message for facebook but decided to post it here:
Joanne, and others, sometimes I am frustrated, sometimes more than ever which happens when I do not speak to Mariam for a too long time, but everything is evil. I mean we all do not want to take pills but we have no choice, right? It's the mixing of Exjade I hate the most (beside side effects) and it's the 8-hour rule from Ferrprox plus the immediately hour afterwards I hate the most. I need to plan those pills a lot because the hour after I need to visit a bathroom. if I do not immediately that iron burns in my bladder. And yes, it let me eat day and night (which you can see) if I not be the boss about my food patron. Ignoring the urge/pressing to eat is hard. Nowadays I simple cannot eat. I do not know why. I try but I cannot. Stupid stomach.
Joanne, generally people have no problems with Exjade. But I would advise you to play with the times and see what works the best for you. Don't listen to me. I am only frustrated. fe is 2100+ Remember: decide self what works the best for you and keep the motivation going!
It is not that i want to complain, because I do not like to complain. But nowadays I am very frustrated. Dearest ferritin level, be brave and be kind. :)
I also needed a extra tranfusion (two units) and will have my regular transfusion this wednesday (2 units). So my dearest ferritin level won't go down (for awhile).
How are you doiing, love and prayers? And how is the family from Bangaldesh doing?