Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Danielle on March 04, 2007, 02:31:53 PM
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I find it really odd that I don't have the same issues with the generic brand as I do with the brand name. I actually like the generic brand better. It doesn't give me the same pain and inflammation as the brand name. Isn't that odd? :huh
Has anyone else noticed this, or is it just me? I've known others to say that the generic irritates them more, but I'm the complete opposite. :dunno
Maybe I'm just losing my mind. Whatever the case, I'm glad that the pharmacy changed me to the generic, or I would've never had the chance to realize the generic is better for me. :biggrin
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Hi there!
Have you check what are the contents written on the vial/box. Maybe they have added something to prevent inflamation etc.
Take care, Peace!
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If that's the case, then they should put that in the brand name one also. :rotfl
It just says Deferoxamine Mesylate. :dunno
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Hi Danielle,
I had trouble with the generic kind and had to go back to the name brand. Who knows what that is all about. I am not using it at all now because of taking exjade. My hemoglobin has gone up in a month's time, and my doctor is concerned. I told him I had heard that this has happened to others when starting exjade. I hope it starts to go down. Take care, Jean
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My hemoglobin has gone up in a month's time, and my doctor is concerned. I told him I had heard that this has happened to others when starting exjade. I hope it starts to go down.
Jean, that would be an AWESOME side effect of Exjade! :rotfl
All kidding aside, most people have that reaction to Exjade, where their ferritin will shoot up at first, and then go back down. I'm sure yours will decrease again. :hugfriend
I think I'm in the minority when it comes to the generic vs name brand. The majority of the Thals that I know say they would rather have the name brand, because the generic irritates them more. :dunno
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:d'oh
I was getting excited for nothing!!! I too thought that she meant HB!!! I thought Exjade is having positive effects on spleen and it is not eating up healthy cells with the use of Exjade!
:sigh
Take care, Peace!
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I know, Sajid. That would've been great, right? :biggrin
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Hi there!
Well, I just got too curious and checked my Desferal box and vial and this is what I find.
On the box it says: Desferrioxamine methanesulfonate
On the vial it says: Deferoxamin. methansulfonic.
The spellings are different but I hope it's the same thing.
Wonder why it's not Deferoxamine Mesylate like yours. :hmm
Maybe they have different cheaper chemicals for the ones they supply to Pak. Although they sound same. I wish I had paid more attention in my chemistry classes to understand the little differences between sulfonic sulfonate and sulfuric etc :grin
Take care, Peace!
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I wish I had paid more attention in my chemistry classes to understand the little differences between sulfonic sulfonate and sulfuric etc :grin
It's ok, Sajid. I did pay attention, and I still don't remember. :rotfl
I have to look into the differences. :hmm
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Hey guess what guys? I meant my ferritin went up, not my hemoglobin, but I think you figured that out. :rotfl Exjade really would be a miracle drug. Jean
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Yes, it would definitely be a miracle drug, Jean! :happyyes
It's ok, we knew what you meant. We were still secretly hoping that you discovered something new about Exjade, though! :yes
My only perplexity would be why your doctor would be concerned about your hemoglobin increasing. That would be a good thing. :biggrin
:hugfriend
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After following a 4 to 5 weeks between transfusions program for 4 years, the doctor at the Chicago center thinks I should change to 6 to 8 weeks between transfusions. This came about because he is concerned about my high ferritin level - between 2800 and 2900. This treatment change goes against what Dr. Vichinsky set up for me in California; he wanted me to keep a mean hemoglobin level of 12. The Chicago doctor thinks since I'm only heterozygous for thal B, that maybe my symptoms are caused by something else.
So now my hemoglobin is going down, and I am getting more and more tired, and I don't know what to do. I called Oakland and have been playing phone tag with Dr. Golden.
It just doesn't seem right to me to change a program that was working. I still have a lot of symptoms that have been called fibromyalgia, but that shouldn't change my transfusions. I am frustrated because it is so hard to deal with doctors who are so far away. I will have to try again tomorrow. I just know that I can't function very well anymore on a low hemoglobin level. :faint I'll let you know how this gets resolved. Jean
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Hi jean,
I'm sad to hear you're having difficultly in regard to your transfussion.I do hope that doctor gets it right and you do get your blood in time.
Be strong and don't give up.
I'm praying for you. :flowers :flowers :flowers :flowers :flowers :flowers
Lots of love
from Kathy :hugfriend
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Dear Jean :hugfriend :hugfriend
Sorry to hear about this confusion. I know how frustrating it is :mad. How about making a conference call between the two doctors in order to settle things out.
Anyway, keep us updated and i will pray for you.
Take care :wink
Manal
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Thanks for the encouragement. You guys always make me feel better. :heartred I am in the process of getting it straightened out. My hemoglobin is at 8.8 and dropping, but I will get a transfusion this Sunday. I finally talked to a doctor in California, and she said to have my doctor here call her. I hope that will clear things up. love, Jean
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Jean,
I don't think you should have to trade quality of life for lower ferritin. If Exjade proves to not be enough, find out if your doctor will allow the combination use of Exjade and desferal. Danielle has used both with no problems. Doctors are hesitant to prescribe both because of a lack of knowledge about it but some patients are using the combination. Perhaps Dr Vichinsky can shed some light on this. The other thing I have heard about Exjade is that when you first take it, you may see a rise in ferritin levels as iron is released from your organs into your bloodstream. It is believed that eventually, this higher concentration of iron in the blood will subside. Time will tell.
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Andy.
I am hoping that my ferritin level will be lower next month, otherwise I will work on getting one of the doctors to start up desferal again along with exjade. It all takes time when you're working with doctors who are so far away, and it gets frustrating. Thanks for your help and support - it means so much. Jean
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@sajid mine says DESFERRIOXAMINE METHANESULFONATE and i got it from jamillah sultana where did you got yours???
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Hi Asim,
The ones that I mentioned are from the Pakistan Thal. Society in Liquatabad.
Take care, Allah Hafiz!