Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: patel.1005 on January 17, 2011, 05:28:10 PM
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Hey guys, I need some help. I was wondering if anyone can offer me different ideas on iron chelation as the therapy I'm on right now doesn't seem to be working.
Currently I am doing 750mg desferal push over 15-20 mins two times daily. My ferritin is somewhere in the 10000's. This number is really starting to frighten me. I used to do the 8hr infusion over night on the desferal, but we stopped that when I had an allergic reaction when the desferal was mixed with hydrocortisone to help with the itchiness. Then i was switched to Exjade, but with that I always feel nauseous and have really bad diarrhea all the time. So then they put me on what I am on currently.
The sad part is that when I was on the desferal (8hr) or Exjade my ferritin stayed between 6000-8000 even though I was never regular about taking my medicine. I didn't like the daily reminder of the drugs so I wouldn't take them. I never even comprehended how serious it would be if i didn't regularly take them. But last august I did a lot of reading about iron overload and thalassemia and everything because my doctor wanted me to take to some parent who had a newborn just diagnosed with thal major. While doing the reading, I was shocked to see what my actions were putting me at risk for. So i immediately started taking my desferal religiously.
In the past 4.5 months, I've probably skipped about a weeks worth of medication in total. So I don't understand why my ferritin won't fall below 10000. I know that I cant expect to see results immediately, but I don't understand why during the period I wasn't taking my desferal regularly, my counts stayed around 8000 and then when i did start taking my desferal regularly, they jumped to above 10000.
I asked my doctor to switch me back to the once daily 8hr desferal infusions. Hopefully that will help somewhat. Also after a couple months of that the doctor wants me to do a combined therapy of the overnight desferal and Exjade.
Is there anything else that I can do? Any other treatment options that people have tried that have been successful? Please let me know.
Thanks,
Archana
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Hello Archana,
I think you have taken the 1st and the most important step of understanding what needs to be done. I have no experience with chelation personally but I think other members will be able to help in that regards.
From what I hear is that the ferritin counts are for a general idea of what options are for managing the ferritin level. I think you might want to get your Liver Iron Concentration done. Also, I am not sure if you can try Kelfer (also known as L1) which has been a well known drug to remove iron in countries like India, Pakistan.
I guess another good step if your asking for ideas from other thals. I am sure this site is a good one and can help you get to your goals.
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Archana,
I am not going to beat around the bush. Your chelation program is not working for you. The push is inadequate and you will need a different approach. You need to be taking IV desferal 24/7. This can be arranged in a hospital setting or the IV can be placed at the hospital and you can take it home, like our member Umair did for awhile. Your ferritin is in a dangerous range and prompt attention is needed. It can be beat but it will take an aggressive approach. Your current level is a true danger to your heart and it must be addressed. I will also point out that Ferriprox, the best chelator for heart protection is available in the US under the compassionate use program for those who cannot tolerate desferal. A sense of urgency is required. I would also suggest that you be seen at Chicago. They can put you on a solid treatment program with proper annual supervision. I feel that this is essential for good health and ultimately survival.
Children’s Memorial Hospital
Division of Hematology/Oncology
2300 Children’s Plaza, Box #30
Chicago, Illinois 60614
Phone: (773) 880-4618
Fax: (773) 880-3223
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I'm currently being treated at Rush University Hospital in Chicago because I go to school there for respiratory care. I dont know how well 24/7 infusions will work with me since I am in school currently. I am going to ask my doctors if i can get in IV or a pump started that i can just carry around with me all the time and keep going to school. I am in respiratory care program and I have no time what so ever to stop my studies. I know my health is important and I need to prioritize, but I have difficulty completely putting my life on hold for a disease that has already taken so much away from me. I need to hold on to school and my studies so that I can know what I am fighting for everyday.
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I would suggest calling Chicago Memorial.
Contact Director: Alexis Thompson, MD (Absolutely wonderful woman).
Contact: Janice Beatty, (773) 880-4618
Explain what your situation is and see if they can either consult with your current doctors or if you can be seen by Chicago Children's and have a program put in place that your doctors can follow. Usually, the Centers of Excellence want to see a patient once per year, but they can design treatment programs that can be followed by other hospitals. They can also set you up with the required scans. You should have a T2* scan done on your heart and an MRI on your liver to assess the true iron load. Exjade and desferal in combination can work rapidly to bring down the iron load, but the desferal has to be working better than it is with your current program.
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We are here to support you and we are going to walk this way along with you!!!
Welcome on board!
Dori
PS My body cannot stand desferal either (ulcers in my mouth and it started with a rash so watch it CLOSELY!) Neither L1 (deferiprone) and Exjade, but I take that last though.
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Dore,
Do you also react badly to IV desferal?
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I don't react to the desferal itself. I reacted to desferal mixed with hydrocortisone. Desferal on its own, I haven't had any bad reactions to except for the normal itchiness and redness at the site.
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Dore,
Do you also react badly to IV desferal?
Yes, but I am going to post my answer in my today created topic. I have never had hydrocortisone. Why was it mix with that? It is a steriod?
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.
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Yes, but I am going to post my answer in my today created topic. I have never had hydrocortisone. Why was it mix with that? It is a steriod?
I had really bad itching at the site and I would end up scratching it out in my sleep. One time I scratched it out, didn't notice and rolled over onto the needle in my sleep. I got an infectious abscess from the needle. So the docs thought that if the mixed in hydrocortisone it would help prevent the itching. Hydrocortisone is commonly given for allergic reactions. It is a steroid.
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Archana,
I hate to say this but you are in great danger and your priority should be your health right now.
Andy explained things very clearly and clearly stated that the best solution for you is the 24hour chelation either in hospital or at home with a 24hour use of the pump. Of course best thing would be to start Ferriprox and desferal together but -alas- in the USA ferriprox is not in use!
Do something immediately. Go to the hospital Andy has mentioned and let people there decide your chelation scheme. Surely your current chelation is not working, you need something else.
Your problem will be solved if you do somenthing now! Good luck,
Lena
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Archana,
I agree with Lena and Andy. Your health is the most important factor for you.
Please refer to http://www.ferriprox.com/us/default.asp for Ferriprox Compassionate Use Program in the US
Also, Andy has wrote a post on this quite a while back : http://www.thalassemiapatientsandfriends.com/index.php?topic=1566.0
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Thanks to everyone for the advice and concern.
I know that my health has to be a priority, because without health, there is no future. However, I have trouble reconciling myself to the fact that I would have to put my education and everything on hold for thal. It already controls so much of my life and has already taken so much away from me. The one thing that I have never let it get in the way of was my education, and I dont know if i am willing to let it get into the way now.
I am willing to get as aggressive with the therapy as possible so long as I am still able to attend classes everyday. If the doctors can figure out a way to put me on a 24/7 desferal IV and let me go to classes, I am more than willing to do that. If they want me to come in to the clinic and get checked everyday on Ferripox, I'm willing to do that. I'm just not willing to stop my classes.
I have worked really hard to get to where I am at right now. I have 2 more years before I am done with classes and school. Im not going to let anything get in my way of finishing these two years. If I put my classes on hold, I know that I will never get back to them. Being finished with school and finally being able to start working is the only thing that I have to look forward to in my life right now. If I stop school, then I no longer have that. I will no longer have anything to fight for.
I still have to talk to my doctors about the ideas that you have given me (the ferripox or IV desferal). My next appointment is on Jan. 26th, so I will talk to her then, if I don't get a call from her before then. I will post what me and my doctor decide after I talk with her.
Just an update, starting tomorrow, I am being switched to a 8hr. Infusion of desferal and I know its not near aggressive enough, but it will be a lot more effective then the 15-20 min. push.
Thanks,
Archana
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without your health in good order you could die..and then the education will not matter..please love yourself enough to put your health first..education can wait..iron overload can and will kill if not taken care of right away!
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Archana,
Joanne is absolutely right on this. I am glad you are increasing the desferal, but please get a T2* or MRI ASAP so you can see what your true iron load is and if you are in immediate danger. The T2* will give you a clear picture of the iron load in your heart and from this the proper approach to your chelation can be determined. Ever since your first post about this, I can't help but think about the similarities to the case of Thoa, a young girl who was going to university in Florida and did not really understand the implications of her iron load. Neither did her family. I had spoken with Thoa on the phone while she was changing locations in Florida and she had planned on getting her chelation routine straightened out once everything was settled. I was shocked when I learned that this 21 year old girl living in America had suddenly passed away. After the fact I felt I should have been more clear about the dangers she faced because of her high ferritin and wished I had tried to do more to convince her. I cannot make the same mistake here. I want you to read her sister's words.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2998.msg29696#msg29696
hello,
I am Thoa's sister and I thank you all for your support, ever since Thoa passed away it has had alot of impact on me and everyone else. That was how I became a member of this website. I never knew that this website existed and with all the info that I have been reading I wish I knew this back then. Only if i can go back in time. Lets just say my family and I was not well informed about Thals major or about thals period. Now I am helping myself to be more informed so I can help others to be informed somehow. Losing a loved one is the hardest feeling anyone can ever experience. Thanks again everyone..
Take care of yourselfs...
I am not doing this to frighten you. I am doing it out of responsibility and hope that you can turn things around quickly. I know it can be done, as we have counseled members Umair, Panos and Nur and they have all watched as their iron loads and gone from well over 10,000 to well under control. Please don't put off good health. It's the other things in life that can wait.
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Andy and Joanne could not put it better. Everything that is said in this thread is said right, not to terrify you but to put you on guard and make you realise where your priority should be.
When I started desferal my ferritin had reached 8.000 and back then I was not aware of the consequences. When -years after- I realised the danger I had been in, I was so scared and thanked God I had not been dead back then because the truth is I was really close.
Nothing else matters more than your life and your good health and both are in great risk right now.
Please understand that and act asap.
Lena
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I had a T2* done August 2010. it showed normal LV/RV/LA/RA size and function. There was significant iron overload in the liver and the myocardium, but otherwise, the test was unremarkable.
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Do you have the T2* score?
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I have a copy of the report, but I dont see a score on here, what am I supposed to be looking for?
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It will be a number between 1-40. You should see something that refers to Myocardial loading or Myocardial T2*.
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I have hepatic T2* 2 ms and myocardial T2* 8 ms
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8 is considered as borderline severe cardiac iron loading. 2 is just above severe loading in the liver. This does need immediate attention. I would again suggest contacting Dr Thompson at Chicago Children's. The example shown below was from a patient with mild iron loading in the liver and a safe (above 20) heart range. This patient has been on combination chelation for years using desferal and Kelfer (Ferriprox, L1, deferiprone) and was 40 years old at the time. The scales at the bottom are the reference scales. Do not be mislead by the term moderate, as moderate does need attention. For reference, our member Nur, went from 8 to 20 in two years of 12 hours desferal 7 days per week. Her chelation routine was a faithful 7 days per week during this period.
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/scan0003cropped.jpg)
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Archana,
I am so happy to see you trying to understand what needs to be done. You don't have to give up all what you want to do. You just have to understand "You can reduce Iron Overload by taking proper measures".
As your cardiac loading is high, I think you can make a case of Compassionate Use of Ferriprox in the US. Please talk with your doctor about it and as Andy has mentioned your best option is to talk with Dr. Thompson at Chicago's Children's Hospital - that will do you a world of good and take you to the best steps to be taken.
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Hey guys,
just wanted to post an update. I talked to my doctor and she said that since we just made a change in my chelation this month, we can't make another one until 2-3 months. But she thinks that my ferritin should begin to decline, and if we're still not happy with how fast it goes down in a couple months, shes going to put me on the Exjade as well as the desferal. I suggested the ferripox, but she says that she has had better and safe results with an Exjade and Desferal combination. So we are going to wait for a few months and then probably add the Exjade. I know its not ideal, but it makes sense to only make one change at a time...
Thanks for all the support,
Archana
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Hey guys,
So its been a while, I thought I would post an update. My doctor called me a few days ago, my ferritan levels were 7403. After peaking at about 11000 at the end of last year/beginning of this year, they finally started dropping a few months ago and have been steadily dropping. I about started crying while walking in for my transfusion, I was so happy. I know I still have a LONG way to go before I'm anywhere near where I need to be, but I'm on the right path.
Right now I am taking 2000mg/8ml over 8 hr infusion on desferal everyday. I am meeting with my doctor in the next month or so and am going to ask about starting Exjade at a very low dose to target iron in the heart, because I know thats a major concern right now. My goal is to have my iron completely under control by the time I graduate (06/2012).
I want to thank everyone here and send a special thanks to Narendra and Andy, who really brought the seriousness of what I was doing to myself to my attention.
Thank you everyone!
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Any possibility of taking desferal for longer periods than 8 hours at a time? I would also suggest diluting it more. The longer you can take, the better the results will be. Desferal and Exjade can be used together, although I still recommend the Ferriprox/desferal combination, as it is most effective in the heart.
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I've never thought about diluting it more. Thanks for the suggestions, I'll bring them up with my physician when I next meet with her. I believe I'm maxed out on the dose I can get on desferal so I guess the next progression would be to increase the infusion time.
I know that my physician has used the ferripox/desferal combination before on previous patients who were refractory to desferal/exjade. I believe that my physicians hesitance in using ferripox is that I had severe nausea, and diarrhea with the exjade and so she is hesitant to start me on the Exjade or the Ferripox because they are both known for having nausea, vomiting, and diarrhea as side effects. I will, however, bring it up with her again and discuss the potential use of simultaneous antidiuretics to manage those side effects.
Thanks!
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The recommended amount of water to use with 2g is 20 ml. With your iron level you really need to be taking for longer periods at a time. Even if you could manage a couple days a week when you took at least 12-14 hours, it would make a difference. Honestly, I think you need combination therapy to get the iron load under control. You would most likely be eligible to get Ferrirpox in the US. The biggest problem is that desferal only chelates while you are taking it, so for 2/3 of the day you are getting no chelation. For high iron loads especially, the chelation goal should be as close to 24 hours per day that you can get and this can be accomplished with combination therapy of desferal/Ferriprox or desferal/Exjade. Even a low dose of Ferriprox daily would help if added to the desferal. I know a patient who has used desferal and kelfer (Ferriprox) in combination for years. She can only take 1/3 to 1/2 the normal kelfer dose daily due to joint pain and she has to stretch her desferal simply due to the cost of desferal, but she has managed to keep her iron load under control and has a T2* score of over 20. She dilutes the desferal even further and takes for up to 18 hours when she takes desferal, which is only a few times weekly at most. Although she created this method on her own, I learned that this method has since been tested and it was discovered that taking the same amount of desferal over a longer period of time will definitely provide a better chelating effect, even though the same amount of the drug is used. The length of time taking desferal is very important.
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Archana, its so good that you have taken measures to improve your health. I can imagine that thal is not something u asked for and that keeping up with treatment can sometimes be a burden. I ask u to please keep this thought in your mind as u make your decisions always....i know u do not know the children whos parents spend days and nights on this forum...but remember they are looking up to u. Most of them r young and don't know what's to come, they need support and positive results from adult thals. Even more, the children aren't the only ones looking for hope and inspiration but the parents are too. We look to older thals for guidance, hope and reassurance. You r our glimpse into the future....u r the role models we want for our children....u r the inspiration our children need to be succesful with their future health.
I know its deep but I just read this thread and I was amazed at how much u sounded like me just a few years ago. My health was always put on hold but I also didn't have thal major. Now I think of my son when I make a decision not to take a test, or take my vitamins.. Or anything of that nature.
I hope all this makes sense....I'm so sleepy right now that it is hard to focus on my mobile screen!!!
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Cari,
Thank you so much for you kind words, I can only hope to live up to your expectations. I've made mistakes, a lot of them. Now I am trying to make up for them. I'm willing to do everything I can to get there. You think of you kids, in a way I do too. I don't have any yet, but I want to. So I need to keep myself healthy in order to do so. I also think of my parents who have supported me in everyway they could. It may no have been what I needed but they tried to do what they could and so now I try to be the best daughter they could have.
Bring a patient all my life has motivated to to help others which is why school is so important to me. But I have realized that if I don't take care of myself I wont be able to help others so that also motivates me to keep on top of things. I can proudly say that in the past five months I've only missed 4 doses of my desferal due to reasons beyond my control.
Again thank you for your show of support and the additional motivation you have given me today to take care of myself.
Archana
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Archana,
I am so glad to learn about the decrease in your Ferritin levels. Keep up the good work.
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The recommended amount of water to use with 2g is 20 ml. With your iron level you really need to be taking for longer periods at a time. Even if you could manage a couple days a week when you took at least 12-14 hours, it would make a difference. Honestly, I think you need combination therapy to get the iron load under control. You would most likely be eligible to get Ferrirpox in the US. The biggest problem is that desferal only chelates while you are taking it, so for 2/3 of the day you are getting no chelation. For high iron loads especially, the chelation goal should be as close to 24 hours per day that you can get and this can be accomplished with combination therapy of desferal/Ferriprox or desferal/Exjade. Even a low dose of Ferriprox daily would help if added to the desferal. I know a patient who has used desferal and kelfer (Ferriprox) in combination for years. She can only take 1/3 to 1/2 the normal kelfer dose daily due to joint pain and she has to stretch her desferal simply due to the cost of desferal, but she has managed to keep her iron load under control and has a T2* score of over 20. She dilutes the desferal even further and takes for up to 18 hours when she takes desferal, which is only a few times weekly at most. Although she created this method on her own, I learned that this method has since been tested and it was discovered that taking the same amount of desferal over a longer period of time will definitely provide a better chelating effect, even though the same amount of the drug is used. The length of time taking desferal is very important.
Hi Andy,
Another great help from u dear Andy. Actually i was thinking about taking 1.5g desferal in 20ml for 18 to 20 hours and i just find this post. Is it Ok? More hour and more dilution.
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Hey guys!
Its been awhile so I thought it was time for another update....
My ferritan had started to plateau around 6000 and besides that I was having trouble sticking myself. I would have the needle in my hand and would just sit there with it hovering above the site. I took me forever to actually poke myself even though I used an local anesthetic cream so it wouldn't hurt.
So a few months ago and after some conversation with my docs we decided to switch me over to the ferriprox. I am now taking 2.5 tabs three times a day of the ferriprox and wtith two months my ferriton has dropped to around 4500. It makes me excited that I have started to go back in the right direction again but I'm still caustious to see if the downward progression will continue or if it will plateau again like the desferal did. If it does plateau out again then my doc said that I would have to go back to the shots every night on top of the ferriprox, which I'm okay with as long as the decline continues. Hopefully it doesn't come to that.
That's it for now...thanks to everyone for their comments and support!
Archana
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Hi Archana,
I am happy to hear that Ferriprox is working for you. Now that you have been off desferal for awhile, you may find it a bit easier to occasionally use it in combination with Ferriprox. Knowing you don't have to do it, may actually may it easier to take. It would help your ferritin to drop quicker and get into a more comfortable range. Although Ferriprox works well in the heart, it is not as effective as desferal in clearing liver iron, so you may want to consider some desferal too. Once your ferritin is under control, Ferriprox may be all you will need, as is the case with our member, Poirot.
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Dharmesh,
Yes, the longer you take desferal, the better the results, even when not increasing the mount taken. I learned this from an Indian patient who did this out of necessity due to low stocks of desferal. When I heard this method confirmed by a world renown thal doc at the Singapore conference, I wrote in my note pad that (the patient who developed this method on her own) is a genius!
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Now that you have been off desferal for awhile, you may find it a bit easier to occasionally use it in combination with Ferriprox. Knowing you don't have to do it, may actually may it easier to take. It would help your ferritin to drop quicker and get into a more comfortable range. Although Ferriprox works well in the heart, it is not as effective as desferal in clearing liver iron, so you may want to consider some desferal too. Once your ferritin is under control, Ferriprox may be all you will need, as is the case with our member, Poirot.
Ya thats exactly what me and my doctor are hoping for. However, she has a cautious approach to changing things. She likes to change only one thing at time. So first we switched from desferal to ferriprox to give me a break from the needles and to see how well it works for me on its own. After 1 or 2 more months, we will meet again to discuss adding desferal once or twice a week on top of the ferriprox.
This gives me hope for more control...
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Dharmesh,
Yes, the longer you take desferal, the better the results, even when not increasing the mount taken. I learned this from an Indian patient who did this out of necessity due to low stocks of desferal. When I heard this method confirmed by a world renown thal doc at the Singapore conference, I wrote in my note pad that (the patient who developed this method on her own) is a genius!
To Dear Andybro,
It is Really Really Admirable. Want to write a quote "Necessity is the mother of invention." Getting cost effective desferal was a tremendous difficult task before some years and still it is unaffordable for many many Indian and other patients :( , i am feeling sad about Sajid's case, was low stock, availability, the reason?
You just hide the identity of the Indian genius patient, who is this fellow?
FYI: Perhaps Cipla Ltd is going to launch generic Desferioxamine within Six months, but i am not having any supporting documents.
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The Indian patient is a member of this group and one of the older Indian patients, but I must always respect her privacy. She has spoken of this herself in the past. Her chelation routine is out of necessity, as she can only take 1/2 to 1/3 a dose of kelfer due to joint pain. She takes desferal, but this becomes costly, so she stretches it out with this method. Since I have known her, I have had her taking vitamin E also and it really has made a difference.
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The Indian patient is a member of this group and one of the older Indian patients, but I must always respect her privacy. She has spoken of this herself in the past. Her chelation routine is out of necessity, as she can only take 1/2 to 1/3 a dose of kelfer due to joint pain. She takes desferal, but this becomes costly, so she stretches it out with this method. Since I have known her, I have had her taking vitamin E also and it really has made a difference.
To Dear Andy,
I agree with you and privacy must be respected. :agree
If only 1/2 or 1/3 dosage of Kelfer is going in than what is the Iron level, whether it is under control?
COST & AFFORDABILITY is a global issue, Why Bill Gates, Warren Buffette and Clinton Foundation are not looking on Thalassemia for Charity?
Again on Vitamin E i visited that link GNC VITAMIN and found that this Capsules much costly.