Wegeners disease in Remission.

[elephant]

Hi elaine, I can't complain, just sinus issues but nothing major. Elaine just keep asking questions and learn as much as you can about this disease. I would get the kidney checked out. Is he seeing a Wegeners specialist? How is feeling?

[wgrebel]

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.

[Col 23]

Hi wegrebel
I too am from the legal world and agree about on a case by case basis. Everyone has different reactions to the drugs and different symptoms although some are similiar to others. Im not in remission yet and have realised that getting back to normal may never be. But as this group describes it,we can achieve a "the new normal" for you. It is extremely frustrating waking up each day and within a couple of hours or less you know if your going to be okay today or not. How can we be in remission if we are still on medications to manage the disease. I think I will term remission as being totally off all drugs and no signs of the Wegs. This is only because one week it can be not active and the next it can be and it moves so fast. Constant vigilance, knowledge of signs and symptoms appear to assist in lessening the damage.
cheers Col 23

[elephant]

For some reason, some people never achieve remission without staying on a immunosuppressant drug. That also can mean maybe the right drug has not been used yet to get that person in remission...for example using the RTX instead of cytoxan.
Everyone is different, this disease is not cut and dry, it's very complicated and that is why I see a Wegeners specialist.
I'm on four medicines and have not achieved remission ( cyclosporine, bactrim, prednisone and cellcept)...still have night sweats, sinusitis , mild sinus pain and now red bumps on my skin...
I see my local Rhuemy today and then the Wegs specialist about week after that.

[Col 23]

Hi Elephant
I dont think I will ever really understand Wegs your right very complicated and individual.
Sorry to hear about the red bumps, I had them under one arm for a while, they were not raised but just very red, they faded and they went away, I also get sores if I have any clothing rubbing. Im not happy today I have to go up on the Pred for a while, have had a few bad weeks, tried to hang in there on 15mg of Pred after tapering but not going to happen just yet. More tests blah blah. Just when you think you have a chance of tapering and feel that you may be getting towards remission. I just want to get to 10mg as I heard that you start to loose the moon face and some weight.
cheers Col 23

[elephant]

Col it will happen, sorry your going up on prednisone. What is the plan? Is it to keep you on 15 mg for a month and then slowly reduce it down to 1 mg a month?

[JanW]

You can have a medication free remission or a medicated remission though. Remission really should mean the achievement of clinically minimal signs of disease activity. My doctor certainly told me to not expect that a medication free remission was in the cards, no matter what drugs were eventually given. His big thing is reducing/eliminating the use of prednisone, which has been possible in my case.

[elephant]

That would be my goal too, " Eliminating prednisone!"

[Sangye]

I've had non-stop active disease for 5 years with non-stop complications/damage and have never been able to get back to work or do much at all. I've been in constant severe pain no matter how limited my activity. The thought of all that continuing is far worse than the thought of being on immune-suppressants, even for life. I think if I had more function and less damaging disease, I might have a harder time coming to peace with the idea of a drug-maintained remission (immunosuppressant only, no pred).

This is a radical shift for me. When I was first dx'ed I couldn't imagine being on a single drug for a year. I guess the past 4 years have sort of beaten the idea into my head!

[Col 23]

Hi again
I suppose the dream is a medication free remission with limited damage and the reality is medicated remission. I dare to dream.

Have to go back up to 20mg Pred again for about a week and then taper slowly depending on tests taken today. So fatigued no quality of life at the moment, nose has started to drip again, aches and pains everywhere. Joints swelling and sweats. Oh so over it. Had been on 15 mg for nearly but not quite a month and deteriorated. Was meant to go down by 2.5mg on Saturday so disappointed. But hey I will survive the disappointment and keep on, I will get there eventually. Doc said it could take at least another 6 months.

Cheers Col 23