Wegener's Granulomatosis Support Group

I have a question for everyone. How long have you been on predisone. Is this a medicine that we can take long period of time. I have been on predisone for over a year now and was just wondering if anyone else has had any problems or been taken off of it.

Let's see, I did 8 months of prednisone. I have been off for almost 3 months. I was happy to taper down because that stuff made me crazy, hungry, and hyper!

I don't know, but I got the impression from my team of docs that they did not want me on that stuff for the long term. I can say that right after I quit taking it my joint pain returned. At first I was miserable, and my doctors told me that I shouldn't have to live like that. When Tylenol and Ibuprofen didn't help, I got some tramadol, which is a non-narcotic pain killer.

I never had to break into those pills, because the pain has gone away. The doctors said that they suspected the pain was a result of tapering off of the prednisone and that it would go away and they were right.

Once I got off of the prednisone I also got to quit taking a whole plethora of other drugs, so it was good for me. Now I am on a small dose of immuran and that's it, and I don't feel any side effects from that stuff at all.

-bree

Thanks Bree. I am hoping next month my doctor will say i can taper off of it. I hate being on it.

Glad to hear the input, I'd like to hear more from other people.

I'm still presently on 5mg of prednisone it has been 2 years this month along with Methotrexate (4 months of cytoxan).

I have been able in the last six months to lose 22 pounds (gosh who would of thought diet and exercise would actually work), so I feel a lot better but I really want to be completely off of the prednisone, I'm concerned with long term effects.

More feed back anyone?

Post edited by: jer29, at: 02/13/2011 03:53 PM

Post edited by: jer29, at: 02/13/2011 03:54 PM

You should be , but I have found it a nessasary evil. I have been off since mid oct. but with 2 flares in 3 weaks I started at 5mg today. usually I only have too go to 15mg toget enough control to work(with my other meds). REMEMBER to reduce the amount of pred.slowly....

I am so happy I went to my doctor last week for a check up. He is real happy on how i am doing and even asked how i was feeling. I told him i was feeling great. He then told me he was going to cut down on my predisone which made me even happier. I am now taking 2.5 mg of predisone so maybe he will take me off it in 4 months.

Yes, My Dr. reduced my pred at one time fro 40 to 20mg and I Passed out, I am now on 10mg and Bactrim everyday. I had Rituxabam last October after being on Methotrexate and Pred since I was diagnosed 2-yrs ago and the Rituxabm is the only thing that has helped me. I now feel better than I have for the past l-l/2 yrs, at least I am able to be up and around again and I am very Thankful that he ordered the Rituxabam.

Hi Jackie..hope youer even better now..I was diagnoed with wegeners this april 1st....Im doin wqay better too because of the rituxin.keep on keepin on..Ira

hi all,, i have had Wegener's Granuloomatosis since 1984 when it wasn't reall that well known about, anyway long time good bit of damage to my lungs one now totally collapsed and not working. recently had to have one eye had saddle nose rebuilt with sylastic which rejected then done again with piece of bone from my hip, stayed ok but small nose now and left nostril tends to fall in. recently seen a picture of the back of my nose where it is all eaten away, and i have had to have my right eye removed due to a hole coming in the corner of it where the pink bit is in your eye. i was in so much pain for a long time, and hard to believe but i am so glad it has gone now, the eye that is because no more pain. i just pray that the same does not happen to my left eye. my nose is blocked a lot and i have to irrigate it, not very nice but has to be done, but now with the hole in the corner where my eye was and my eye removed its much harder now for me to irrigate it. i feel that W.G. Is really catching up with me now after all these years, but i will still keep fighting it, even if there is not a whole lot they can do for me now only keeping me on certain meds, think i have had my fill now of endoxana, (cytoxan) was on that recently for 6 weeks to see could they save my eye. no luck though. finished of that now and taperedc down of the old steroids to one a day 5mg. it has all been tough but i have fought it well, and will continue to do so. it picked a wrong one when it chose me hahaha. i will fight with it till the end. anyone want to talk about it i am here to listen and chat ok regards ange. xx

my understanding is that long term pred. use can cause low bone density and cataracts.