Off Prednisole for 3 weeks and had to go back on it!!! How did you find going off it?

[Carol]

After being so well and always going forward with my health the specialist said go off 2.5 mg Prednisolone. Well gradually I got aches and pains in various spots of my body and tiredness. Felt like a clock winding down. I decided i would put up with a few more weeks until I was able to see him again. BUT then the pins and needles started in one arm so I put myself onto 10mgs for a start. It was scarey as when I first got sick one hand went numb within about 20 mins and that's when they rushed me into start chemo. I didn't want to go down that track again. I knew the last 2.5 would be hard to go off and was prepared to put up with all the aches. It's winter here in Australia, I wonder if I'd be better trying to go off Pred when the weather is warm and balmy in summer. I'm still on Imuran and Bactrim. Can you tell me about your going off Pred, what happened. regards Carol in Australia

[pberggren1]

I'm sorry to hear that you had to go back on Pred and ctx. Everyone is different when it comes to tapering but one should always take it slow.

[Sangye]

Carol, read this thread I started. You'll see exactly what happened to you and how to fix it.
http://www.wegeners-granulomatosis.c...s-learned.html

[Carol]

Hi Sangye, thanks for your reply. I couldn't find that heading on your blog but then I'm quite computer illiterate. Could you perhaps copy it onto this site then others as well as me can read the info about getting off Pred. Carol

[Jack]

Carol, just click on the words "Lessons Learned" in Sangye's post above and it will take you to the Thread with all the Pred tapering info.

[elephant]

Carol do you have sinus involvement?

[Carol]

Hi elephant, yes I had terrible sinuses to begin with, bleeding, caking, build up in the back of my throat etc BUT they are so good now except for a little bleeding.In fact they are the best they have been for years and years. I can't believe that the ENT specialist had me booked for another clean up - surely he must have reasied that it was more than just bad sinuses. How do they get to be specialists - surely he could have said I think there's something more going on here. Carol

[elephant]

Glad your sinuses are much better. I am in remission, but still have a little stuffiness and blow my nose everyday. I do get a little blood but not much. I know it is frustrating to increase the prednisone again, and again but you will get there.

[pberggren1]

I'm so glad to hear that your sinuses are doing better Carol. You only had the sinus surgery done once right? Is that the procedure where they go directly into your maxillaries called the Caldwell Luke Procedure? When you had it done were you already diagnosed with Wegs? I have had bad luck with ENTs up until now I have seen 8 so far and the eighth one is awesome, far above the rest. His website is: www.drmiaent.com

[zylodey]

Thanks for the ENT information. I was diagnosed with WG about a year ago and the ENT specialist saw me for about 3 minutes in the hospital and said I needed to use saline and confimed I had WG and I have never seen or had a follow up appointment with him. I have the saddle nose deformity and am having trouble finding a surgeon in sask who will do the rhinoplasty. My specialists say I can't have it for another year, but they were at least trying to get me on a waiting list. I have a lot of crusting - no bleeding, so I will see if I can get my doc to recommend me to this ENT. I too am from Swift.