Hi is there anyone on steroids?After taking th... - Behçet's UK
Hi is there anyone on steroids?After taking them for 6 week, my dosage going down my symptoms are coming back?Anyone else experience this?
Seems that's the way Behcet's works. We take the steroids, get our symptoms cleared up and then wait for the next relapse. I'm sorry to hear yours are coming back so quickly. It may be that the prednisolone dose was too conservative. But everyone is going to be different.
Hi Kerry, I started taking steroids before I had a diagnosis ( which back then took me 12 years) I had terrible ulcers in mouth, nose, throat. Each time dose reduced everything would start up again. Also each new flare had to be treated with higher doses. After about 5 years and taking doses of upto 140 mg daily I decided enough was enough. Weight gain, depression, manic highs and terrible lows and no diagnosis as the steroids were masking other symptoms. Eventually after many, many different meds, I got my diagnosis and commenced with Colchicine for 6 years. During this time and for 3/4years on I didn't have any symptoms at all really, I honestly thought that I was the one who got away. Alas the last year has been quite bad with several symptoms which I am waiting to get various tests done to decide on the best meds for me. There were some probs with Colchicine, tummy upsets mainly but it was worth it to get the long remission from the ulcers and othe probs. I cannot go back on it as I came off due to a stomach bleed. Hope this info is helpful and don't forget we all suffer in different ways and adapt to differents meds......this was my story, it may be different for you.
Hugs
Billi
Thanks for your reply, very helpful. I got diagnosed last year, but my doctor isn't that great hoping to change to a different rhemotologist. I have been long suffering for 17 years. I started on colchicine but I didn't get on with it well, was supposed to go on to am immune suppressant but he changed his mind and put me on the steroids to my dismay. Started taking them 3 times an day to 2 times a day and now on 1 1/2 a day, since then my ulcers and eye problems and joint pain are back with a vengeance and my fatigue is awful. I thought I was on to a winner to start as I felt like super woman first time in ages that I felt well. Not to sure if steroids are a good thing???? Thanks Kerry x
Every time I'm treated with steroids the symptoms come back in a very short time. Hate the steroids, so it's gotten to where I just ride out the flares unless it's so bad I if can't tolerate it. Best of luck to you!
Beverly
I Been on steroids for years now, and we are trying again to come off them. Yes, symptoms do normally return when I reduce them.
I take a large dose of prenisone then taper back down to my daily dose of 5-10mg when ever I have a flare up. I've been on 5mg for about 15 years. Sometimes I have to titrate the dosage up for awhile, but I'm not able to get lower than 5mg. I have GI problems from it, my skin is thin and fragile but nothing else controls my symptoms.
I was just on a taper dose and within days of the last dose I had ulcers again. I was so happy that the steroids had cleared up the pseudofolliculitis, as nothing else works on it. But now it's back, along with all the ulcers.
Not diagnosed yet, I have to go back to rheumy in 10 days and show him my wonderful new crop of ulcers, and get the results of more blood work.
