Oh bother - having a flare!

**pwc51** · 10-23-2010, 08:33 AM

It has all been going so well! It is 14 months since I was diagnosed. I had completed 6 months of Cyclophosphamide and then moved on to Methotrexate. All seemed well under control and Preds were down to 7.5mg. I was just about to start the reduction to 5mg but just before I got there I started getting severe joint pain again this week. Had an emergency blood test yesterday and saw my consultant at 5:15 tonight. Inflamatory markers were up and blood / protein in urine.

Back to Cyclophosphamide on Monday and 60mg pred from tomorrow. His proposal is to go onto Azathioprine after that. Hopefully we'll be more successful this time round.

**pberggren1** · 10-23-2010, 08:46 AM

I'm so sorry to hear this. Going back on the ctx and high dose pred can be very discouraging. I hope that your doc is monitoring you closely. My doc does all my regular blood work once a week to keep track of how the Wegs is doing on paper. He said that way one can usually detect when a flare is starting and be able to jump on it right away and possibly not have to use ctx.

**Geoff** · 10-23-2010, 08:59 AM

Like Phil has said, we are sorry to hear your news. If I can say one thing its not to get too downhearted. There was a time when as I moved away from my initial Dx I thought it was all plain sailing and that it was only a matter of time until I beat this disease up. That has proved not to be the case but I take solace from the doc who told me that he would rather I had a flare, which he could quickly treat, than to hammer my body with heavy duty drugs which would affect me in so many other ways.
Living with Wegs is like being on a roller coaster and we have to accept that. I have been on Azathioprine for the best part of 9 months now with good results. I have been reading your early posts and noticed similar syptoms to myself. I am sure you will get back on track.

**JanW** · 10-23-2010, 09:08 AM

Sorry to hear your news, pwc, but the GOOD news is that you saw your doc, immediately got blood work and are now getting the treatment you need. I hope that when the time comes for me (and I'm sure it will because the experts at the Symposium say that most weggies will flare at least once) I will be psychologically strong enough to jump on it, even when my emotions will want to say it's probably nothing.

**Jack** · 10-23-2010, 09:58 AM

The regimen of moving from Cyclophosphamide to Azathioprine to Cellcept was the one I went through and it took four or five years of ups and downs before finally becoming stable. The quicker everyone reacts to the flare, the shorter will be the backward step and eventually you should be able to go for a very long time without further major problems.

Don't be disheartened by the setback, I'm afraid it goes with the territory, but you'll get through it.

**Sangye** · 10-23-2010, 02:20 PM

Oh man.... I'm so sorry. Like the others have said, I hope the drugs lull that dog back to sleep quickly. Hopefully you won't have to stay on them for long.

**elephant** · 10-23-2010, 03:03 PM

Sorry you are going through this again. Keep us posted, we are here.

**pwc51** · 10-23-2010, 07:25 PM

Thank you all for your encouragement - I know I am not alone in this 'journey'. I am letting my frustrations get the better of me when it all seemed to be heading in the right direction! I guess this is the reality of WG. Hopefully we'll kick it into touch quickly as we have caught it fairly early (arguably not early enough to avoid the heavy guns again). I will try to post updates on progress as time goes on to add to the great knowledge base that is building here.