EXJADE reaction

Hi,

I'm new to the group.  My wife has been taking EXJADE for 3 weeks. Three days ago she had a reaction, a severe rash all over her body.  I took her to the ER and they treated her with Benadryl, adrenaline(EPI) and a steroid.  The rash came back the next day, so we went to an other ER, UC San Francisco, and they basically  repeated the treatment and gave us a prescription of a prednesone like drug. The rash is under control now, but I was wondering what others have done with the rash and after as far as restarting EXJADE.

Mike

Hi, Mike.  Welcome to the group.   

I had gotten that horrible rash as well.  My doctor just lowered the dose and the rash went away on its own in about 7 to 10 days.  Many people end up with this rash while taking Exjade.  Most of the time it just resolves itself and doesn't come back after it runs its course. 

Thanks Danielle,
 I wanted to get as much info as possible, since we are seeing the doctors tomorrow.  You didn't stop the EXJADE until the rash cleared? My wife has severe reactions to most meds it seems, which doesn't help.

Mike

No problem, Mike. 

No, I didn't stop the Exjade.  My doc just lowered the dose, and it went away on its own.  Once it went away, my doc increased the dosage back to what it was before the rash.  It never came back, and that happened back in April of this year.  I've been told that the body just needs to adjust to the medication, but if your wife is generally allergic to medications, she just may continue to react differently to it.   

Good luck to you guys.   :hug

Hi, Mike.
I never use EXJADE before, but I guess I'll be getting that kind of rash too if I am using the meds, since I had it quite severe in the injection site when having desferal. But I think Danielle's info is quite helpful, maybe you can try to have the dose reduces or if the rash gets too severe maybe you can stop taking the meds for a while until it went away & starts again with lower dose. Your wife is seeing a haematologist, isn't she? I'm sure that's an option the doc will consider for her case.
Anyway, I'm writing to you bcoz I have had terrible experience with the steroid drugs, prednesone. I wonder if how many of us here had been ever prescribed with prednisone? What exactly the use of the drugs anyway bcoz when I finally can manage to stop taking the meds, I found out that I'm okay without it, so kind of confuse why I should take it in the first place. 
I think you should really ask the doc for clear explanation on how far the drugs would do her good, is it really that necessary to take the meds, is there any option you can have instead of taking that drugs, just ask anything you can think of! 
Well, lots of luck then! 

Hi Yenny,

What was the reason that you were taking prednisone? It is used to treat a variety of problems.

From  http://www.medicinenet.com/prednisone/article.htm

Prednisone is an oral, synthetic (man-made) corticosteroid used for suppressing the immune system and inflammation. It has effects similar to other corticosteroids such as triamcinolone (Kenacort), methylprednisolone (Medrol), prednisolone (Prelone) and dexamethasone (Decadron). These synthetic corticosteroids mimic the action of cortisol (hydrocortisone), the naturally-occurring corticosteroid produced in the body by the adrenal glands. Corticosteroids have many effects on the body, but they most often are used for their potent anti-inflammatory effects, particularly in those conditions in which the immune system plays an important role. Such conditions include arthritis, colitis, asthma, bronchitis, certain skin rashes, and allergic or inflammatory conditions of the nose and eyes. Prednisone is inactive in the body and, in order to be effective, first must be converted to prednisolone by enzymes in the liver. Therefore, prednisone may not work as effectively in people with liver disease whose ability to convert prednisone to prednisolone is impaired

Hi Andy,
I'm not quite sure why the doc give me prednisolone. 
  Well, back then I was studying in jakarta, I think I got too tired & was having infection in my throat, so my Hb dropped too low & I was opname for blood transfusion. The doc made some test & found out that my ferritin level is terribly high, so he administered IV desferal treatment while I was hospitalized. When I got home & check the drugs prescribed to me, it was then I learned that I was given prednisolone. I had been given the meds since I was hospitalized without me knowing it! and the doc didn't seem to bother telling me or my parents about it! Even when we go seeing him for checkup & asking for clear explanation on the drugs, he didn't say much & just prescribed me more of the meds. Bcoz I've started taking the meds, I can't stop it by my own, right? I learned that this kind of drugs should be reduced slowly with doctor's advice until one who's taking it can really stop having it. So I continue taking the meds without really knowing why, actually!  who knows what the doc was thinking!?!
Even when I've got the moon-face side effect, the doc just reduces the dose a bit, I really can't stand it! So I stop seeing the doctor & go to Kuching to consult another doctor, she asked me why I need the meds, I told her I don't know, my mom assumed that the doc thought I was having auto-immune, I'm not.. even if it's true, how could he possibly diagnosed without any test whatsoever?
So the doctor in Kuching told me that I didn't need the meds & that she said really didn't understand why the doc I was seeing before gave me that meds (well, at least she's honest with what she knew & what not). So she help me reducing the dose of the meds until I can safely stop taking it. That's the story.. confusing, huh?! I felt being treated kinda like a lab guinea-pig by the doc, which was driving me crazy 
I dunno, Andy, I'm really confuse with my own condition. Not quite sure how to handle it right & having lack of resources for it, it's really hopeless for people like me in where I am...  :'(

Sorry Mike, I'm kinda getting 'what should be your discussion' off track. Don't you have any advice for Mike, Andy? 

Hi Yenny,

I have been corresponding with Mike with personal messages and even mentioned Danielle's experience. I also gave him a short reply at http://www.thalassemiapatientsandfriends.com/index.php?topic=342.msg3234#msg3234

Some people also get intestinal discomfort when using exjade. I think one reason people are experiencing problems is the same thing that happens when patients first start using L1 (ferriprox or kelfer). The intitial dose is too high and the body reacts. It does seem that patients starting on lower doses and then working up to a higher dose have fewer symptoms than those who start on a high dose immediately. When starting these drugs, ask the doctor to start you on a lower dose until your body gets used to the new drug.

Thanks for your help. You have a great group website.

Mike

EXJADE Reaction Update

I wanted to let you know the results of the doctor visit today at UC San Francisco.  The resident doctor that we have been seeing said that after a reaction they typically stop the EXJADE. I mentioned the input that I received from this group and was it possible to restart after the rash cleared.  The resident left to consult with the staff doctor and he said that with a severe reaction like my wife experienced   (she had rash that was solid red front and back of her upper body), they would not continue the  EXJADE.  The staff doctor said that it was possible that the next reaction would be worse and possibly life threatening.  Her current iron is at 1500.

Mike

After reading this thread i'm nont sure what to do.

I'm on Exjade since 20 of this month. After gastrointestinal problems and abdominal pain i developed a skin rash to day ago.
 
My doc say it is an reaction to one of the substances of Exjade. He told me to stop the drug until the rash desapear. Than i have to restart.
Shel i start with a lower dose?

Hi Gabri,

When Danielle developed the rash from exjade she did stop and then resumed with a lower dose and then worked her way back up to the previous dose and it did work. Her rash was terrible but was gone with two weeks or so. I would suggest letting the rash totally clear before resuming exjade at a lower dose.

Thank's Andy,

do you know for how long time she takes the lower dose?

Thank's again

Gabri

Hi Gabri,

I just went back and read Danielle's post on the subject and she didn't even stop exjade.

http://www.thalassemiapatientsandfriends.com/index.php?topic=442.msg3251#msg3251

I had gotten that horrible rash as well.  My doctor just lowered the dose and the rash went away on its own in about 7 to 10 days.  Many people end up with this rash while taking Exjade.  Most of the time it just resolves itself and doesn't come back after it runs its course. 

You guys are lucky to have hands on Exjade, Its like a holy grail in Canada; Approved but not available. Even approval is associated with tons of restrictions. Just makes me frustrate soemtime.