i have it on face and arms
s anyone been put on thalidomide pills i have for... - LUPUS UK
s anyone been put on thalidomide pills i have forms 2 fill in next week for no other pills are working i have had lupus for 12 years and try
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weetheresa
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My dermatologist put me on thalidomide 18 months ago. When they asked if I had heard of it, I said "not really" as I wanted to know how much of the scary background they were willing to tell me. I had to fill in a lot of paperwork too. I'm a bloke so they emphasised the legal obligations about sexual relationships.
They only tried this because I reacted badly to hydroxychloroquine. I was taking prednisolone too. I had a terrible rash that consumed my entire body. I took thalidomide for five weeks. My skin worsened so they put me on chloroquine sulphate instead. Four weeks later, I ended up in A&E with a toxic reaction, all my skin fell off and I looked frightful, like a zombie. Spent over a week in hospital bandaged up like a mummy. They then tried acitretin. After three months too long and a fallout with one of the dermatologists, we agreed the acitretin was making my skin worse. And maybe the prednisolone too. That, and some other complications, meant we tried a drug free regime since Nov 2012. My skin still isn't great. They think I may have psoriasis too. Though I have the lupus butterfly facial rash, and been told to avoid sunlight. They've been experimenting with topical treatments. First dovobet. Now dithro cream.
But don't let this worry you too much. It is only my experience. We're all different. The thalidomide may work for you. I really hope it does, and makes you much better.
The thing that I always get now, is whenever I'm at the pharmacy, or see another doctor, and they ask that mandatory question, "Are you allergic to anything?". I include thalidomide. And they say, "Eh, what on earth were you taking that for?"
they keep trying different stufff with me aswell its really doing my head in and am on the sick but they are trying 2 get me back 2 work that is doing my head in because of the illness and them at me some days u just feel like giving up i have a medical soon aswell so may get kicked off the sick i bet they done it before 2 me but got put back on it again
Which brand of hydroxycholorquine did you take Plaquinel or Quinoric?
I was on plaquenil, two tablets a day
Hello weetheresa, I was diagnosed with discoid lupus in 1984 but flares over the years sometimes were worsening. I was placed on thalidomide in 2000 but I researched the drug thoroughly before agreeing to use it. The quite nasty lesions (9) I had on my back healed within 5 days, wonderful! the next time I had a flare the drug only worked to 50%. I never took it again but over the next 5 years I was complaining about pains in my right leg and foot (of which the front half is permanently numb) it was discovered I had peripheral neuropathy possibly caused by the thalidomide. Please do your research first, it is used by doctors for leprosy and is supposed to be successful but everyone is different. Good luck to you.
omg thats not good i went for the pills 2 day but not took any yet am going 2 read on internet before i take them the lady that gave me them 2 day said any pains anything go 2 hospital dont just wait around and do nothing ty for sending reply xx
i have been on it for a week now and have tingling on left side arm and leg got doc tue so will need 2 say 2 her
Best of luck for tomorrow, stand your ground with the GP
she wants me 2 stay on them for another 2 weeks said ok see how it goes but she said if am not happy i have just 2 come of it so far am fine so lets hope it works for its on elbows now
