Wegeners disease in Remission.

[elephant]

"I went to my Rheumatologist today and she is putting me on Bactrim DS daily because I keep getting sinus infections. I am on Bactrim DS twice a day for ten days. I started that dose on Sunday, but I noticed some blood and green/yellow stuff come out of my nose when doing the sinus rinse. I told her this, so if I don't get better in ten days,she wants me to go to the ENT and have him culture my sinus. I asked if I could have my cellcept reduced to 1500mg with Dr Langfords blessings of course. She came out faster than a speeding bullet, "NO!"
Well, she thought that since I am having sinus infections I should stay where I am at. I do agree somewhat, but the other side of me thinks reducing cellcept would lessen my sinus infections. Well that's all I got!

[freakyschizogirl]

Isnt it fascinating how this disease affects us all differently?

Aside from all the symptoms its things like the PR3 and ANCAs can be high in people with less symptoms.

It really is a person to person disease.

[Col 23]

Hi Elephant
Havent been on forum much lately so not all up to date. Are you meant to be in what I call medicated remission? When I asked my Rheumy when I would get of Methotrexate she said "probably not for years".
I suppose thats whats meant to be controlling the Wegs. Im meant to be in medicated remission because my bloods have all come back good, but I keep getting all sorts of pains in the legs, major fatigue and lumps in my legs an body and my nose also burns alot. (not sure how else to describe it). Now Im being told I have Fibromyalgia, Im so frustrated and confused. Was pleased I got to remission stage but its all bitter and sweet. Still on 9mg of Pred and lowered to 20mg of Methotrexate.
cheers Col 23

[Jack]

My guess would be that he is classing you as in remission because of the blood test results, thinks you should now have no symptoms so has come up with a new diagnosis. Perhaps he does not realise that you can still be showing Wegs symptoms with normal blood results.

I always assume that symptoms are due to Wegs unless proved otherwise and have not been far wrong. The chances of contracting another condition (apart from infections) in addition must be quite low.

[elephant]

Col, I am on four medicines to keep me in remission and sounds like I will be on them for a long time too. Col, I agree with Jack. I think your WG is not controlled, so glad you are contacting the VF monday. Just remember one step at a time.

[renidrag]

I haven't been on for a while, at least to write, but let me share for a moment. I was diagnosed in August 09 with lung involvement only. February 10 I was off prednisone and June I was and remain drug free. However, the damage I took along my so far short journey with this hideous disease has put me on medical disability. Like some, the neuropathy in my legs is debilitating. Along with COPD, I am not able to do much for very long. And yet, when I read all the stories and questions posted, I feel guilty that I am actually doing very well. I am in remission with no drugs other than Coumaden because of DVT and Calcium for bone loss.
I thank all of you and think every day how lucky I am and pray for a breakthrough for a cure.
Glad you are back Jack, hope all is well.
Dale

[Jack]

No need to feel guilty about doing well, I'm sure everyone on here is very pleased that there are success stories as well as all the usual problems we hear about. Sorry to hear that you have picked up some permanent damage along the way, but without ongoing Wegener's attacks there may still be room for some improvement or refinement of medication. I think Tramadol has helped a little with the pain in my legs and inhalers for the lungs, but it is still far from being a cure.

[Col 23]

Thanks for your replies , Dale glad to hear you are doing well although the damage sounds pretty tough to live with. Jack I was prescribed Tramadol and Mobic (anti inflammatory)what is your recommended dose just out of interest? I try not to take it unless cant cope with the pain any longer. I thought it worked okay too. Thanks for your comments today and before, been really helpful even though havent been participating much in the last few weeks. Thinking of you all.
cheers Col 23

[Jack]

The Tramadol I take is 100mg slow release twice per day. I was told to take it on a permanent basis because the effects build over a period of days. I'm currently considering asking for an increase in dose because I still find things difficult first thing in the morning and then again if I sit for too long. Or perhaps I should just work my way through it. I do try to minimise the drugs I take, but I need to be able to walk.
I have no experience of Mobic, but my renal clinic tell me to avoid nonsteroidal anti-inflammatories.

[drz]

I was diagnosed October 23, 2009 after battling a two month "sinus infection". I was in the hospital with my "sinus infection" the first week of September 2009 & had clear lung x-rays. By October 14 my lungs were full of nodules and after the C-anca test the rest was history. I had no kideny involvement in October 2009 but was back in the hospital in November 2009 with some kidney involvement. My creatinine was 2.3 when discharged from the HP was 1.3 in March 2010 and was 1.4 today. I returned to work part time in December 2009, working from home & full time in February 2010. I am an Administrative Law Judge so I do not do strenuous work. My numbers have improved over the months since my diagnosis to the point a VF recognized specialist stated I was in remission April 05, 2010. I am only going by what he said but my experience is remission is just that the disease is not active, that you still have to deal with what WG has done to you. Kind of like what happened after Katrina hit the coast. The storm was over August 29, 2005 but Mississippi is still rebuilding. That is how I view remission. WG damaged my hearing, completely destroyed the nerves in my right foot pad to the point I cannot feel with my right foot, killed a toe on each foot, cause me to go into congestive heart failure, and ravaged my kidneys and sinuses. I am at the stage where after six months of the standard treatment (cytoxan & preds) my specialist and rheumatologist are conferring to move me to Imuran and begin the gradual stepdown off prednisone. I dont know if it can be achieved with or without drugs but it seems to me first phase of remission is the repaif what has happened to you. The second phase may be getting back to normal. I dong know. The one thing I do know about WG is that it is much like the legal world----nothing is what it seems, there is no book to go by, the only constant is change, & it is wildy unpredictable and should be addressed on a case by case basis. You cannot put WG in a box and you cannot define remission in broad terms it is different from case to case.

When you say the Wegener's killed a toe on each foot, did you have to have them amputated? Did the neuropathy ever improve with treatment?