Poll: What's the Longest You've Been in Remission?

[Sangye]

I'm curious about how long Weggies are able to stay in remission. And I just discovered we can make Polls! :D

[pberggren1]

I'm not sure what you mean Sangye about Polls?

My first flare was in 2004. I was trying to contact the current specialist I had through the spring and summer. He would never return my calls. I was having increased fatigue over this time frame and some achy joints now and then if I can remember correctly. I was on mtx, I think. By September I was able to get a hold of another Wegs patient in Saskatoon where all my current specialists are and she set me up with her Rheumy who is my current Rheumy. I saw her for the first time in October 2004 and she put me back on ctx and pred.

So by the Spring of 2005 I was feeling great and switched back to the mtx in June I think. I moved to Regina to live with my Aunt and Uncle in November 2005 and saw a new Rheumy there in January 2006. He put me on Imuran instead and couldn't understand why my other Rheumy put me on mtx. He was kind of rude and rushed through everything and wouldn't return my calls either. I moved back home again with my parents in April 2006 and quit the Imuran on my own in August of 2006 - I just thought that if I am feeling good I can quit everything and so I did.

I continued to feel good and worked a Job at Walmart in the fall of 2006 for 2 months but had to quit because it was too dry in the building. In 2007 I landed a job with Family Support Services and worked that for about 4 months. I went on a Pilgrimage to Europe in October and started feeling fluish the last day of the trip. I got home and thought maybe I was having a flare so I got my GP to order all the blood work again. I got all the results by mid November and saw my ENT and Rheumy again in Saskatoon at the end of November and went back on pred and ctx.

So I guess I was in remission from Spring 2005 until Fall 2007. About 2 and a half years.

[Sangye]

Phil, you don't see the poll question and answers at the top of the page?

[pberggren1]

Maybe I need my eyes checked? Ha Ha

[germaine]

I think I need a definition. Do we mean remission with NO MEDICATION, or with all our indicators looking good and generally feeling not too bad, and not on actual killer doses of medication? Germaine

[germaine]

I also think it would be a good idea to put this in a more visible place, so everyone sees it. I think the poll is a good idea. Germaine

[Jack]

I put "more than 5" but that is with the help of drugs. A definition might be in order.

[Sangye]

That makes sense. For this poll, let's just say any remission--drug-maintained or drug-free. If we're on "killer doses" of medication, I don't think anyone would call that remission. The Wegs specialists seem to call it remission when a patient has stable signs/symptoms, is on less than 5mg pred and on a maintenance drug (Cellcept, mtx, imuran or even rtx used on a regular basis). Of course there are exceptions to the pred dose-- some people can only maintain remission by staying at 10mg or below.

We can do more polls to get more info, I mostly just wanted to see how they work. It's kind of cool I think.

[pberggren1]

Yes it is cool Sangye. You are one cool cat.

[elephant]

I found out yesterday that I am in remission! Yahoo! I still have to be on Cellcept 2000mg, cyclosporine 100 mg and prednisone 8 mg.....we are going to slowly reduce the prednisone. She said if I can get to 7 mg that is ok.....I guess since I have damage done to my left maxiallry sinuses. I am thrilled to hear those words! Don't want to wake up WG dog.

[Sangye]

WOW!!! Elephant, I am SO happy for you. I hope your remission lasts forever. It can happen. :)

[DEE]

COOL elephant what good news before your holidays so happy for you too DEEx

[elephant]

Hoping it lasts, and counting my blessings. I will have to stay on immunosuppresants for the rest of my life, but I am ok with that if it keeps the disease quiet.

[JanW]

Yeah, Elephant!

[Dumpy]

Mine was pronounced in remission about 2 weeks ago and this is remission with sulfamethoxazole only (which I will probably have to take forever) but if that is all I have to worry it will be great.

[andrew]

I selected the 'I've never been in Remission' option. Although my doc aluded to the 'R' word last time I saw him, I'm not convinced lol!

[Sangye]

Dumpy-- congratulations! Wow, just Bactrim. Piece of cake! I'm so happy for you, my friend. WHOOYA!! :D

Andrew, maybe we should add another choice "Remission? What's that?" I'd have to check that box too. :D

[Dumpy]

>Yes it is really great to be classed as in remission but it will always be of concern for the flair up so we never really become free of it all.