Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Danielle on February 11, 2006, 06:27:54 AM
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All votes are anonymous, so if you would like to add something to your vote, please reply below. :biggrin
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Desferal + Ferriprox
Desferal: 4 vials per day, twice a week
Ferriprox: 2 + 2 + 2 , five days a week
Today I got checked my Ferritin its 1067 :$
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Hi Ayesha! :biggrin
Which drug is Ferriprox? Is it a totally different drug, or is it one of the ones I mentioned above, but with a different name? :huh
If it's a totally different drug, I'll update the poll.
How are you doing with the Ferriprox? Any side effects?
Your ferritin isn't bad at all, but lately I'm not too thrilled with ferritin levels, since I've been told that the ferritin doesn't tell you how much is actually stored in the organs. My ferritin is 1500, but I'm not convinced that it's not a lot higher in my organs. I think I'm going to get that liver scan done soon. I'm scared to find out what the results are, though. :sadyup
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:hithere
I use desferal two times a week and Ferirprox 7 days a week...My ferritin is 700 at the moment..I have been on it for about a year now and no side effects what so ever...
Ferriprox Danielle is L1 another name for it...its also known as Deferiprone...Hope this helps you out!!!
:bighug
Take care
:cheer
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And just to confuse things a bit more, L1 (deferiprone) is also known as Kelfer, which is made by Cipla, in India. All are the same oral chelating drug.
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Hi Smurfette! :wave Thanks for the info! :biggrin
Thanks to you also, Andy. I wasn't aware of that either. I updated the poll and the board title. :)
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Hello Dianelle :)
am doing great with Ferriprox and as Andy told ya its Kelfer and L1, they are available in Pakistan with the name of Ferriprox heh, too much confusion :D, I didnt have any side effect Thank GOD, doctors have been checking out the WBCS, RBCS and all... I dont know about Organ Ferritin :$
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Ayesha, I'm so glad to hear that you haven't gotten any side effects from the Ferriprox. :biggrin
How many pills do you take each day?
I wish the doctors over here in New York were in favor of prescribing the oral meds. I would really like to try it. :(
I can't stand all these painful lumps I get with the Desferal. I think I may have to get my mediport put back in, so I can do it intravenously again. I'm running out of places to do subcutaneous. :sigh
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I take 6 tabs per day and I take it for 5 days a week, that makes 30 tabs per week :)!
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Are the tablets big? Hard to swallow?
Sorry I'm asking so many questions. I'm a curious one. :biggrin
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Nopes not at all, they are medium in size and I think the most best feature is that its Better than pumps and injection :D heh!!
And please dont be sorry, we all are here to acknowledge people and ourselves with the best knowledge of cure and treatment :)!
cheers!
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Yes, that is definitely the best feature! I wouldn't care how big those pills were, even though I gag easily. :rotfl I'd throw my pump out in a heartbeat if I could take those pills and they worked for me. I've just never seen them before, and was curious to know how big they were. I've been told that they are huge, but they could've changed by now. :biggrin
And I'm glad you don't mind the questions, because I'm sure I'll think of more! :crackup
I'm so glad we have such a great group of people. I hope none of you will hesitate to ask me anything if needed! :grin
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And I'm glad you don't mind the questions, because I'm sure I'll think of more! :crackup
I'm so glad we have such a great group of people. I hope none of you will hesitate to ask me anything if needed! :grin
LOL! and i will be glad if i can help ya guys :)!
hmm Yeah we are blessed with great peoples on this community :)! I wont hesitate to ask ya anything :P if you dont hestitate too :D
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Ok, deal! Does it look like I'm hesitating? :rotfl
I wont hesitate to ask ya anything :P if you dont hestitate too :D
Ok, you got it! But, I guess you can already tell that I'm not hesitating, so now you just gotta hold up your end of the bargain. :rotfl
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ah! dont worry about me :P I will knock ya door at mid-nite if I need anything :P u will be crying after giving me this bargain heh!! :rotfl :rotfl
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:rotfl
Nah, if you need me, I'm here. :biggrin
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I am on Desferrioxamine TRYING to do it 4x a week. Now that I've got the Chrono, which is much smaller than the Graseby, I will use it for over 24 hours or more, carrying it around with me to work, etc. It's more effective and I don't have to prick myself so many times which after so many years, is still very traumatic for me.
I did try to go on L1 / Ferriprox early last year but came down with very serious agranulocytosis which I spent weeks in ICU and many more in hospital and almost took my life away for. My case was presented at the TIF conference in Dubai. One of the poster presentation.
Now that I've fought for my life back, no way am I goiing to go back to L1 although I would love to have an oral chelator that works for my heart. I'm very jealous of those who can go on L1 and Desferal because it works both on heart and liver. My ferritin level is as high as 5000+. It used to be higher! My MRI shows that I've got moderate liver overload and mild heart. I'm scared and am trying to do my desferal as much as possible becuase that's my only option to keep me doing the things I want in my life for now.
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Yes, that is definitely the best feature! I wouldn't care how big those pills were, even though I gag easily.
If you cant swallow big pills then you can just break open the capsule and dump all the powder into a spoonfull of honey, the powder by itself is extremly bitter so dont try it.
While your at it you can also have brandy with it ;) I am kidding
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Oh my God, I'm so sorry to hear that happened to you, Eponine. I'm very happy to hear that you made it through that alive, though. I'm glad to have you here. :)
I would love to go on an oral chelator myself, but I'm willing to hold off until I find there are no serious complications. I'm hoping that Exjade is showing some promise out there. Have you talked to your doctor about that one?
I have the Crono also, and I adore that pump. It's so much better than the Graseby, and much smaller like you said. I still get lumps, but they aren't as bad as I used to get them with the Graseby.
Have you talked to your doctor about your high ferritin level? Would you ever do any intravenous Desferal therapy to get it down some? I'm not sure what the protocol is over there, but usually when ferritins are really high over here, the doctors will tell us to do extensive IV therapy through a mediport. I'm thinking of getting my mediport put back in, but I'm not a big fan of them, as I've had two already. One had a severe infection, and the other had a clot. :(
I know what you mean about being scared. I feel that way also, and try to do my Desferal as much as I can, but I find myself slacking at times. I try to at least put it on 4 days a week, but it's not good enough. :sigh
If you ever need to talk, or vent, we are always here for you. :hug
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If you cant swallow big pills then you can just break open the capsule and dump all the powder into a spoonfull of honey, the powder by itself is extremly bitter so dont try it.
While your at it you can also have brandy with it ;) I am kidding
LOL I think I'll try the brandy, Ashish. :wink
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Hi Danielle
When my wife was in India, she was taking Kelfer. Good stuff. Brought her Ferretin down from 950 to less than 200. She did not have any side effects. She has not had to take any since she has been in the US.
She was transfused 5 weeks ago and her Hb is 9.8 right now and Ferretin at 400. We go back in 4 weeks to have the next round of tests. She enjoys tea with her meals. Tea slows down the absorption of iron from food.
Will keep you posted.
Regards
Bharat
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what i am hearing is that exjade/ICL670 is not effective in removing iron from the heart. is there anybody on this site who is/has been on exjade/icl670 and has measured their cardiac iron level using T2* both pre and post using Exjade/ICL670? How were the results?
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In a report issued in December and reported on the CAF website at
http://www.thalassemia.org/bodies/body252.php
the first clinical evdience is given that exjade does remove iron from the heart in humans.
"In an analysis of 22 patients with thalassemia (16) and anemias (6) receiving Exjade 10-30 mg/kg/day for one year in a clinical trial, mean MRI T2* scores improved from 18.0 milliseconds to 23.1 milliseconds (p=0.013) and correlated with significant reductions in liver iron and serum ferritin, both measures of body iron stores. T2* is a cardiac imaging test that reflects the iron content of the heart. A T2* score of less than 20 milliseconds is considered a signal for excess cardiac iron. As cardiac iron burden is reduced, T2* score increases."
These are early studies and the patients currently using exjade are the bigger trial group. Hopefully, we will soon hear more about this. It was unsettling that at the conference in Dubai, we could not get any commitment from one of the doctors conducting trials about exjade's effect on heart iron, other than it had worked in gerbils. Although he felt very sure that the positive results would follow in humans, he could not tell us that they had any data to prove it yet.
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Danielle:
I probably waited longer than I should have for the release of Exjade, which was December 1, 2005 in Ohio. My ferritin was 3,421 that day. I was doing phlebotomies every three weeks to reduce the iron instead of using Desferal. However, the phlebotomies were not that effective. My hematologist was campaigning to get me on Exjade for several years. I filled out the paperwork on the day it was released and it took about a week to get it through EPASS. They Fed-X it to our house.
I have experienced relatively few side effects. I have experienced a little bit of rashing, however it is very minor. I have had some abdominal pain and diarrhea. Again, this is not severe but the abdominal pain can be distracting. For me, this is easy compared to intravenous Desferal. I did that for about two years until my level dropped to normal levels and then did the phlebotomies to try to maintain it.
I am taking 1750 mg per day. (The dosage is calculated by weight.) The 500 mg tablets are a little larger than an antacid and the 250 mg tablet is about one-half of the size of the 500 mg. They cannot be chewed but must be dissolved in orange juice, apple juice or water. As far as the taste, I like it much better with orange juice. Apple juice is ok. I was out of juice for several days and had to mix it with water. It wasn't horrible but it was a little hard to swallow, much better with juice.
Exjade must be taken one-half hour before eating. I have found with cold orange juice it takes about one-half hour for the tablets to dissolve. It takes a little planning to do this in the morning before I go to work. Even though it is not as convenient as taking a pill, again it sure beats intravenous chelation.
As I said above my ferritin was 3,421 on December 1, 2005. I started the Exjade on December 9, 2005. On January 11, 2006, my ferritin was 2,042 and on February 8, 2006 it was 1,720. In two months, it has dropped almost half and I feel much better.
I am beta thal intermedia with an Hb at 9.0. I do not receive transfusions so my increase is a lot less since I am not transfused.
It is very expensive: $5,000 per month. My health care provider negotiated that down to $3,700. Fortunately, my health provider covers all the cost except for my co-pay.
Barry
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Barry,
I was curious about the phlebotomies. While blood-letting is the normal treatment for hemochromatosis, I have never heard of it being used to reduce the iron overload in thalassemia. Have you ever been tested for hemochromatosis? You mentioned in a post on MSN that you are a one gene thal. With your symptoms, it might be possible that something else is working in combination with the thal gene as in the case of HbE beta thal, or lepore thal. If ever a case demanded further testing, it is yours. And I hope with your success with exjade recently that you will be able to avoid anymore bloodletting.
$5000/month for Exjade! Wow! It's a shame we live with a system that is set up for drug companies to milk insurance companies for as much as they can. Rah, Rah capitalism and all, but what about the patients? And does anyone have any idea what exjade will cost outside the US? This drug has so much promise but what good will that do if the price is out of the reach of most thals? Anyone from Novartis care to field that question?
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Andy:
When I talked with Eva Chin, she also mentioned that see has never heard of a thal patient doing phlebotomies for ferritin therapy. However, it does work to reduce the ferritin since the blood is discarded before the blood cells break down. My phlebotomies were for my thal related iron overload.
I first heard about an oral chelator in 1988. In 2005, I received Exjade. It appeared that it would be released sooner but was held up due to Vioxx and Celebrex being pulled off the market. My doctor was hoping to maintain my ferritin until it was released. With what I know now, I would have asked to be put back on Desferal until the Exjade was released. I was taking Aranesp but my body could not overcome the blood draws. When I was released from the hospital in November, I did my follow-up visit and told him that I would not do anymore phlebotomies. Fortunately, Exjade was released two weeks later.
I spoke with a lady from Aetna, our health care provider. Her brother has thal and does the phlebotomies. I gave her the information about Desferal and Exjade and suggested that he contact the CAF.
We all have our own views on politics but I think that there might be other forums to would be better to express our views. The system is definitely broken but it would be helpful to see suggestions on how we can campaign to reform the system. Do you have a name and an email at Novartis that we could all contact? Since, I am new to gaining information, are there ways that we can campaign our political officials to make our voices known? Let's use our energy, since we don't have an abundance of it, to make our voices known.
Thank you for our efforts to keep this forum active and the new format is great. The inteface is much easier to use. Kudos!!
Barry
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Hi, Barry. Nice to see you here. :biggrin
Thanks for the information. It was very helpful. :happyyes
I must say, though, I'm very concerned about these phlebotomies, since Thalassemia patients are not supposed to have them done. I have only heard of them being done on patients with Genetic Hemachromatosis, not with Secondary Hemachromatosis (by way of blood transfusions). We don't have enough hemoglobin in our body to be getting phlebotomies for iron-overload. It's way too dangerous. :sadyup
I hope you can find the correct info soon. :(
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[quote author=Danielle link=topic=54.msg194#msg194 date=1139750968
I'm hoping that Exjade is showing some promise out there. Have you talked to your doctor about that one?
Have you talked to your doctor about your high ferritin level? Would you ever do any intravenous Desferal therapy to get it down some? I'm not sure what the protocol is over there, but usually when ferritins are really high over here, the doctors will tell us to do extensive IV therapy through a mediport. I'm thinking of getting my mediport put back in, but I'm not a big fan of them, as I've had two already.
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Hi Danielle
Thanks for being such a friend. I'm happy to be here too. I'm really glad to be part of the group here where we handle the real issues we are facing plus so much discussion and stuff going around. Really great to know so many other people in other parts of the world and learn how each country deals with Thal. I really feel at home here compared to the last MSN groups that we had.
My doctor knows the implications of such high desferal levels. She's nagging at me to lower the high levels but so far never mentioned about taking extreme measures. My ferritin levels went up because there was about 4 months during and post hospitalisation where I could not have desferal due to the anti-biotics I was taking. Apparently, desferal and anti-biotics cannot go together. Something like they reaction with the free iron or something like that. Anyone heard of it?
As for Exjade, I attended the TIF conference at Dubai where alot of focus was on Exjade where the general consensus from many people is that it has not been tested long enough to see results. Singapore has not approved of Exjade yet anyway, so I'll take a wait and see approach. No more scares after my experience with Ferriprox!!
What is the mediport all about? Would like to know more about it. Where is it attached? For how long?
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Hi,
My name is Archie, and I wanted to get some opinions on the new ICL670 tablets. I'm thinking about starting on them as part of a trial here in Melbourne but don't know to much about it.
If anyone is taking the new drug your opinion is greatly appreciated
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Hi Danielle
Thanks for being such a friend. I'm happy to be here too. I'm really glad to be part of the group here where we handle the real issues we are facing plus so much discussion and stuff going around. Really great to know so many other people in other parts of the world and learn how each country deals with Thal. I really feel at home here compared to the last MSN groups that we had.
Apparently, desferal and anti-biotics cannot go together. Something like they reaction with the free iron or something like that. Anyone heard of it?
What is the mediport all about? Would like to know more about it. Where is it attached? For how long?
You are very welcome, Eponine. I'm always here if you guys need me. :hug
I've actually heard of Desferal and antibiotics not being compatible, but as many times as I've been on antibiotics, I've never been told to cease Desferal until completion. I would like to know what it actually does with the free iron, so if you or anyone happen to gather this information from somewhere, please post it for us. I will investigate this as well, and if I find anything, I'll let you guys know.
As for the mediport, it's a small, dome-shaped device, that is implanted right below the skin in the chest (mostly), arm, or stomach, and is connected to a catheter that is tunneled through a large vein in the body, mostly the one in the chest/neck area. This gives you direct access to a vein, instead of being poked with needles all the time, while trying to find a vein in the hands/arms/etc. Once implanted, it can be "accessed" with a special needle, for intravenous infusions (blood, Desferal, antibiotics, etc), and then the needle can be removed when you are done using it. The needle can stay in for up to a week, and then it needs to be changed. A mediport can stay implanted for many years before it needs to be removed. The majority of people needing long-term care have their mediports for 5-10 years, as long as they are infection and/or clot free. Young kids usually need them changed sooner because of their continued growth.
Hope that helps. :)
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No. Think that option is mostly for cancer patients. No thal here in Singapore that I've heard who has this mediport. Not that extreme. So, does that mean that aspect of treatment here sucks? I know someone who has a ferritin level of 9000+. She was the one who brought it up to our doctor about the mediport, which we call portacath but so far no news about the development. Think we are mostly worried about the care and maintenance of the area.
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I use only desferal, because my doc had said `it's the best at a long time'
My ferritin level is now 1603.
I'm 60 kg.
I use 5 vials at a time.
and I'm trying at least 20 times a month but it's hard.
I should motivate myself much more.
I think this will be helpful for us.
A study is released in 1996 by A. Piga et al. which summarizes patients who take desferal at least 225 times in a year have longer life than others. I read this statement Dr. Androulla Eleftheriou's book.
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These posts have been very interesting. I'm wondering about the antibiotic/desferal thing. Has anyone else heard that you are supposed to stop taking desferal when taking antibiotics? I'm taking some right now and I'm really curious about this. Thanks, Jean[/size]
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Hello Archie,
ICL670 is more commonly called Exjade, so you might like to look at the posts from people who are currently taking it. The reason you might not have had a reply yet is because most people would not have heard Exjade called ICL670. Good luck with your decision!
SalD.
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Hello everyone;
:smile2 I started my Exjade today, April 10th, 2006. 3 (500mg0 dilutable tablets a day, I dissolve them in the water and take them at 7am everyday. Strange as it may seam I had no reactions to the 1st dose, I am glad of that too. :yahoo
from Benjamin Woffindale "Thalassemia Major Patient"
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Hi Ben,
Great to hear that you're on exjade! :biggrin I know quite a few people on exjade and so far the only side effects have been a temporary skin rash that goes away after a week or so and some stomach discomfort and diarrhea, but not serious. Nothing much to complain about compared to the side effects of other chelators.
Keep us posted on your progress.
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Does is really go away, Andy? The rash from the Exjade just appeared ALL OVER my body yesterday. It's so itchy and I look like I have mosquito bites covering my legs, arms, stomach, chest, feet, and hands. I look horrible! :wah
My doctor told me to lower the dose back down to 1000mg. I was taking the full dose (1750mg) for two days when this happened. I was so happy for a few weeks thinking that I wasn't getting any of the side effects, except for some stomach issues, and now this happens. :(
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Danielle,
Everyone I know who had the rash had it for no more than ten days. I think 1750 may be a bit too high a dose. That seems a little high considering your body size and may be the reason the rash is so bad. I don't understand doctors. Why start out with a high dose? This is the same problem people find with L1. The dose is too high to start and they get stomach trouble. If they start on a lower dose and gradually work up to the normal dose their bodies have a much easier time tolerating the drug. I hope the lower dose works out for you and be patient with the rash. It should disappear soon.
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Andy,
The doc actually started me out on 1000mg. I took that for a week, and went to 1500mg. After about another week of that, I went to the maximum dose, which is 1750. I took that for two days, and then I woke up with the rash all over my body yesterday. I called the doc to tell him about it yesterday, and he told me to go back down to 1000mg for a few days and see if the rash goes away. :dunno
My entire body is covered and it itches so badly. I really hope it goes away, because I don't want to have to stop taking the Exjade. :(
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hi! i'm on L1 (since two weeks ago), and it's better than poking myself i think. but the side effects were terrible for me, but i'm coping now.
my ferritin level is really high, like 7700+ so i really should take some action to lower it.
another down side to it? the price. :( it costs like 6.50 malaysian ringgit, or about USD 1.80 per tablet which means i'll have to spend a lot on it....
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This often happens when starting L1. A lower starting dose can help avoid this, but it does sound like your body is now adjusting.
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Hi, I am new to this website and I am glad to have come across such a supportive group of people. I have Beta Thal and I've been using Desferal for about 11 years now. My doctor finally put me on Exjade when it first came out as a trial. The first dose was tolerable, as I only experienced mild nausea. I used 4 500-mg tablets everyday for two weeks straight until I caught a fever that may or may not be related to the use of Exjade. My doctor told me to refrain from using Exjade until the fever goes away. When it finally went away, I started taking the Exjade again, but I started to experience very strange adverse reactions that I could not find in any medical journal. I felt nervous and anxious, among other things. When I later told a nurse about my reaction, she basically told me that I had hallucinated. I was shocked to hear that an iron chelator would make me hallucinate! I was terrified, so I talked to my doctor and he told me to get off the Exjade for a while until the symptoms go away. I didn't understand why I had such strange reactions to the medicine. So that was back in November of 2005. I'm now back to poking my stomach with a thumbtack needle, which is just hard on me since I'm running out of good, fatty spots on my tummy to poke myself. Like other users of Desferal, I find it difficult to comply with my chelating regimen. I need my Exjade!
I'm just glad that I can finally find out about other Thal patients on this website, since I've tried looking for online support to no avail. Thanks for maintaining such a helpful place for us folks! Hopefully, I will be able to use Exjade again. If anyone has any information regarding my strange reactions, please let me know.
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hey all,
I am on combination therepy of Desferal and Kelfer......I take 3 vials of Desferal and 6 Tabs of Kelfer everyday for 4-5 days a week.....