Have been taking prednisolone for over 30 years and am going to try thalomide is anyone on thalomide?

[wende42]

[billi]

Hi wow so long on prednesilone ....I was on it for 7 years non stop but would never go on it again. Do you have BD and if so for how long? I am asking as I wondered what other meds you have been on as there are many others before thalidomide . I was offered this drug about 10 years ago but after duscussion with my Rheumy decided against it, as he said I would probably be lucky to stay on it for 2 years and then would have to go higher up the chain of meds. Eventually we decided on Colchicine which works very well for me and my Behcets. Hope this helps.

Hugs

Billi

[rosshi]

hello wende42,

I too have been taking steroids for 30 years, unfortunately I cannot answer your question, but I do have one for you; have you had your bone density checked? The reason I ask is this; for years I was taking prednisolone, after around 20 years I was sent for a bone density scan; I was pre-ostio, my bones had been thinned by the prednisolone. A draw back from long term drug treatment.

My immunologist changed my steroids to one called deflazacort and also prescribed me calcichew D3 forte; a calcium supplement. My bone density is now as it should be.

I'm sorry I cannot help you with your question; but I hope this info. may be useful, if you didn’t know this already, that is. I hope your question is answered soon, if you want to ask me more about the steroid; please message me, via PM (private message) or a reply to me on this thread.

best regards,

rosshi

[Hidden]

hey

Yes I'm on it. works very well "down below". the outbreaks of ulcers are a lot less.

downside it plays heck with the bowel Expect bouts of Constipation

it will knock you for Six I take mine at night and within 30 mins someone could be slapping me around the face with a wet haddock and wouldn't wake up *blush*

you will get the numb feeling in feet possible hands after about 7 months. its a bit of a weird feeling but given the benefit of helping the ulcers its something I don't mind having.

[Sunshine123]

Hi

I was on it for about 6 months and it was working quite well on ulcers in mouth and down below. Contrary to believe, unless you are planning a family, then it is quite a safe drug if monitored correctly. Make sure they give you a nerve test prior to starting it and every 3/6 months when you are on it. Unfortunately I started with pains down my right leg which where so painful I was admitted to hospital and was told to stop taking it straight away! I think they were just being cautious because other than that it has less side effect for me than many of the numerous other drugs I have been on.

As you will always read on here, drugs work differently for us all but just make sure you trust the consultant giving it you and make sure you have good follow up care.

Hope this helps and good luck with it.

Lisa