Exjade Rash

[Glenda H]

Hello
I am interested in hearing from anyone who has/had a rash from taking Exjade. What part of your body was it on? What did it look like? What are you using for it?
I've got patches of rash around my waist area and itchy areas on my back. I don't know if its from the Exjade or something else. I take 750mg a day.

[Lbrown]

Hi Glenda,

I thought I had an exjade rash too. It seems that it turned out to be dermatitis herpetiformis - which is a classic reaction to gluten. I had the rash for almost 5 years (have been on exjade that long). When I went on a gluten free diet, the rash disappeared almost overnight. (I have not officially been diagnosed as having it)

My rash included small itchy blisters. I would try not to scratch but I couldn't help it. I would end up with small itchy bleeding red spots (on wrists and torso) on a pink background. I'm so glad it's gone.

What is your rash like?

Deb

[Chirley]

Hi Glenda, do you have lactose intolerance? I thought I read somewhere that Exjade has lactose in it.

I didn't get a rash when I was on it.....just sick, stomach ache, diarrhoea and inflamed pancreas with increased enzymes. I wasn't happy .

[Glenda H]

I've decided to make an appointment with a Skin Clinic here. I could just go to my GP but want more of a thorough check. I haven't had a skin check for a few years now. I've got some moles on my back to check out. Hopefully they'll be able to help me with the other itchy areas as well. I'm wondering if it might be something like psoriasis. Apart from the few patches around the waist area there seems to be a general itchiness in the centre of my back. Luckily it comes and goes.

[Marlene]

Glenda,

If I remember correctly, you should stop the exjade, see if the rash clears up and then restart the Exjade. You may have to start a lower dose. You can check with your pharmacist.

Sometimes with this medicine, side effects go away after stopping and restarting at a lower dose.

Marlene

[Glenda H]

I don't really know if my itchy areas are anything to do with the Exjade. I guess we tend to think that any problem is MDS related and it may not always be the case. I've been putting moisturizer on after my shower at night and also been putting Emu Oil on during the day.

[Chirley]

I have very dry sensitive skin so I moisturise my whole body twice a day with sorbolene cream.

About five weeks ago my doctor also started me on Aristocort cream twice a day but I only use it once a day before bed because its a steroid and I don't want to use much of it and I don't want to go in the sun when I have it on.

The rash I get with the copper lasts about two weeks after the infusions finish, so as I have regular infusions, I never seem to be without a rash.

[Glenda H]

I was talking to a lady today who is also on exjade for MDS or something similar. When she first started about 4 years ago she came out in a rash so decreased the dose for a while. She said she thought it looked more like measles but wasn't itchy.