Remission--the good, the positive, the amazing

[snooz23]

I wanted to start a thread strictly dedicated to remission details. In the short amount of time I have been aware of this disease one thing is for sure, this remission thing is no easy task. I know power is knowledge for this disease and it is so important to be well aware of all changes, symptoms, etc. I just wanted an inspiration thread to go to when it all seems too much to handle. It would be great for anyone and all to post information about their remission times--all the good details. For example:

• How long did you stay in remission and how did you get there
• How did life get better when you were in remission
• What drugs (if any) did you have to be on to remain there
• Talk about the amazing things you did while you were in remission
• How many good years/months did you have in between flares where you were able to "relax" a little and enjoy

I am still working towards this state and look forward to hearing from all of you who have been there. Thanks!

[Sangye]

GREAT idea, Snooz! I want to know those things, too. I've never been in remission since dx in mid-2006. I'd like a mental image of what it looks like.

[Jack]

I've been in remission since about 1995 when I switched from Neoral to Cellcept. Before that time, I had regular flares, but was not in bad shape between times and was still able to work with periods of sick leave. Mostly I've used the good times to raise a family and secure our financial future.

Sadly, the long term side effects of the drugs I've needed have now caught up with me and I'm no longer able to work, but my daughters are growing up fine, the house is paid for and I have a pension so I feel very fortunate in many ways.

[gwenllian111]

I was in remission after my initial flare when I was 14 years old - to 18 years old. I was on no medication, and lived life as I wanted. I didn't drink or smoke, and I went to the gym, ate healthily and made the most of things.

I then had a flare up from 1999 to 2007, which unbelieveably, was undiagnosed and untreated for all that time!!! Felt rubbish, but anyway, in 2007, achieved remission again with the help of Ritix.

Flared up again in 2009, hoping to achieve remission again soon.

It is possible, and in the periods of remission, i had no symptoms at all.

There is hope! :-)

[elephant]

I'm not in remission yet, I'm in limbo. So I'm not bad but not 100 percent. I think like myself since I have severe damage to my sinuses/ kidney transplant/lungs. So it is really confusing to me and the docs since I still have positive anca's and sed rate and so forth. I am currently on prendnisone, cellcept, and cyclosporine.
I can tell you what's like to be in remission because I had this disease for over 30 years. When I had my kidney transplant in 1989, I felt like a new human being. I was on Prednisone and cyclosporine ( at that time docs did not know I had wegeners, I was misdiagnosed). Anyways I felt great and did everything that a normal person would do. That lasted about ten years and then flares of WG came up ...going to docs to figure out what is wrong with me and they thought I was a hypochondriac...and so did my family.... . But I think I am in a new normal. Not bad but not wonderful.... Thanks Snooz...

[Jack]

elephant - I've had +ve ANCA throughout in spite of having no symptoms so we just ignore it, but I expect that if it went sky high we would have to take some action.

[snooz23]

FYI my doc at Cleveland Clinic doesn't even bother to look at ANCA--only when first dx. After that it is not even considered...maybe for some it is a good indicator but they told me last week we will not even check it again?

[Sangye]

Same for me, Snooz. My doc at JHU has never looked at it again. He says it's a useless test other than for initial diagnosis. He's done some of the research on ANCA.

[pberggren1]

My ANCA is a good marker for me when I'm flaring, I think.

I was diagnosed in April of 2003. I was able to go back to work in late June. Amazing recovery if you ask me. I took Cytoxan and Pred. I wasn't impressed with my first doctor, an Internal Specialist. He wouldn't talk to me on the phone or do e-mails. I live 3 hours from my Specialists so you can see my frustration when I had questions and he wouldn't answer. I felt not to bad up until fall of 2004. Up to this time I maybe over did it a little and didn't understank WG very good. I did sleep alot though. I had mild sinus involvement compared to what I have now and at other times. Overall my energy was not to bad. I could work about 30 to 40 hours a week, go out and play pool at nights, and take a trip on the weekend. When I started feeling crappy in the fall to 2004 my energy levels were dropping. Also my C-ANCA was slowly climbing from June 2004 up to October 2004 when I first saw my current Rheumy. I had no choice but to drop the Internal Specialist I had seen earlier - he just wouldn't reply.

My new Rheumy then put me back on Cytoxan and Pred for 6 months and then I switched to Methotrexate in May or June of 2005. I felt much better shortly after being back on the Cytoxan and Pred. I should also mention that I got my Waterpik for irrigating my sinuses in the summer of 2004 - this was a huge help and improvement for me. I now could not imagine being without my Waterpik for more than a day. I should also mention too that I read somewhere and my ENT told me as well that Methotrexate can cause sensorinueral hearing loss - the type that I have. My hearing really went bad to it's current state in the summer of 2005 - shortly after being on the Meth for a few months - who knows what really caused the hearing to go dead. It is all just something I have to live with now - as time goes on it seems to get easier to handle at times, but not during a possible flare like I might be having now.

I stayed on the Meth until January of 2006. I switched to another Rheumy because I had moved to another city and he put me on Imuran - he couldn't understand why I was on Meth when Imuran is available. I stayed on Imuran until August of 2006 - then I just quit cold turkey without any doctor involvement. I felt pretty good - new and ever changing normal I guess - from about summer of 2005, even with the weird hearing losses with dizzy spells, until October of 2007. I was totally off all meds from August 2006 until November 2007. This is when I felt the best. I was able to work again for a couple of months in 2006 and again in 2007 from January until about October. I went on a pilgrimage in October to Spain, Portugal, and France. When I got back in late October I felt pretty crappy and by November I saw my first Rheumy again and was back on the Cytoxan and Pred - She gave me crap for going off the Imuran like that - She said that one should never quit cold turkey like that. Next time I'll make sure the turkey is warm, HA HA!!! Just a little humor to lighten it up a little.

I was on the Cytoxan and Pred for 6 months again. I tapered off the Pred by May of 2008 and at the same time quit the Cytoxan and immediately went to 1500mg of Cellcept. I flared again about 5 weeks later at the end of June and went back on the Cystoxan and Pred for 6 months again. I started on the Cellcept again January of 2009 and quickly ramped up to 3000mg per day and then started tapering the Pred and Cytoxan. I was totally off the Cytoxan by the end of March and stayed at 20mg of Pred until June. In June I had a lung infection and in October I had a bout of Sinusitis. It is in October when I started to feel crappy again with lower energy and sore joints and worsening sinuses. I tapered right off the Pred by the end of September. I think I may see a connection with the Pred here - going off too soon and too quickly?

I hope this paints somewhat of a picture for people to understand what was going on. I know I am a little vague about how I felt but as I say to most people that ask me about WG Just say I have good days and bad days and good years and bad years - 2009 and start of 2010 unfortunately is bad.

Thanks again Suzanne for starting this thread and to everyone else on the forum.

Over and Out,
Phil of the north

[Sangye]

Wow, Phil-- I'm just amazed at how well you did in between flares. Working, traveling, etc...