View Full Version : Remission--the good, the positive, the amazing

01-04-2010, 07:24 AM
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!

01-04-2010, 07:44 AM
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.

01-04-2010, 08:18 AM
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. :)

01-04-2010, 08:22 AM
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! :-)

01-04-2010, 08:22 AM
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...

01-04-2010, 08:28 AM
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.

01-04-2010, 01:42 PM
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?

01-04-2010, 01:48 PM
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.

01-04-2010, 06:55 PM
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

01-05-2010, 02:32 AM
Wow, Phil-- I'm just amazed at how well you did in between flares. Working, traveling, etc...

01-05-2010, 04:43 AM
Looking back now at the past 7 years I can certainly say wow as well. A big part of it is my attitude, family, relatively healthy diet - though I do slip regularly. I would love to travel to the USA and see a bunch of you fellow Weggies. But having 2 or possibly 3 flares in the last 2 or so years I have definitely learned a lot and from you guys as well. I know what to look for now more than ever and better know my limits. Some days I over do it and pay for it the next few days. I sometimes wish I had the strength and energy I used to have and clean the whole house in one day.

01-05-2010, 06:42 AM
I was just thinking about that today about cleaning the house. I have to break it up. Today I mopped the kitchen floor and cleaned one bathroom. Of course there is daily laundry and dishes. Phil I totally understand.

01-05-2010, 01:30 PM
I too over doo on some days. I am working on that bits and pieces like elephant. My new years resolution will be to FIND THE TIME TO REST. Who wants to join me?

01-05-2010, 03:07 PM
I DO!!!! I DO!!!!!!!!!!! Think it can happen? I am trying to do less and say no more. But it can be very hard sometimes. the only way I seem to be able to do less is not be home? Make sense? i have to physically remove myself from my house and chores not to do them. But they are waiting!!!!!!

01-06-2010, 03:26 AM
I'm pretty good at finding the time to rest, but I will join you in your resolution. Onatreetop, it might help you to keep a log of what you do and how you feel (physically and emotionally). It doesn't have to be a big job, just a few short notes. I think it'll help you recognize the cycles of overdo--feel lousy--overdo. Pred masks our awareness of that! It really helped me get in synch with my body when I wrote it down. I still do it for some things.

01-06-2010, 03:32 AM
Very good idea Sangye. I used to keep a daily Journal or Diary. I found this helpful with my doc visits in conjunction with the lab results.

01-09-2010, 11:57 AM
Hi, I was diagnosed 2 years ago,usual amount of pred and chemo. Pred is now down to 15 and chemo traded for immundepressant. Been so for a year . Should I feel changes? Ear has cleared, brain has cleared but it would be so nice to walk to the mailbox, take garbage out and walk my 5 stairsteps as an adult, not hanging between the handrails, dragging myself up. Anybody has any uplifting thought?

01-09-2010, 12:23 PM
Hi Moyan, I was wondering how fast are they tapering your prednisone? Are you on Methotrexate?

01-09-2010, 02:28 PM
Moyan, that's exactly how I was for 3 yrs after diagnosis. It's only since September that I've been able to do more.

It can be very difficult to differentiate active Wegener's, damage from Wegs, drug side effects or the fallout of being inactive for a long period. This is where you really need a Wegs specialist to sort it out. Even then, it's very easy to get confused. My Wegs doc thought my weakness and continued pain was collateral damage from the Wegs, drugs, immobility, etc... Turns out the Wegs was simmering instead of being contained. It became evident when it turned into a full-blown flare.

Your current immunosuppressant may not be doing a good enough job at keeping the Wegs under control. What are you taking?

01-12-2010, 08:21 AM
Excellant idea for a remission thread!

My WG came on around the end of March 2003, with me finally accepting I was seriously ill on Decemeber 19, 2003 (I think it was) when I struggled to climb thirteen stairs and was so breathless I ended up in an ambulance to the hospital! After three months (I won't detail; the treatment too much), I was well enough to return to work. I spent the next six months updating data files, which is to say, on my butt, in front of a computer, before I was strong enough to climb the 17 stairs to my office. I used a cane in this period. I was on Cytoxan and Prednisone up through June of 2004. I believe it was June 2005 when I was moved on to CellCept. I was on the Prednisone from December 2003 through April 2005. I didn't have one of those moements when I was officially in remission so much as a point where my measureables had been reasonably stabile for half a year or so. (Though the cANCA measurement was a bit high, if stabile- see other comment elsewhere: This measurement isn't as higher regarded as a continuing indicator of a flare as it used to be.) I believe it was around June of 2007 that I was taken off Cellcept and the state of remission, since has been maintained with Bactrim.

I've been able to do pretty much everything I did before WG during this "New Normal" stage, though my energy level, like others about, hasn't been up to that Mt. Everest climb Cindy has in the works! I had a savage attack of shingles in late October 2007 that reminded me big time that a weggie is more susceptible to infections. (That's a "nag", everyone!)I am much more careful about avoiding infection now than I was in the period between, say December of 2004 after I'd been at work awhile, and managed to avoid colds when everyone in my office had them, and October 2007. (Anti-bacterial wipes and hot soapy water are all I used- and use- in my defense, plus reasonable efforts not to touch my eyes or mouth in between hand cleaning!) The shingles were setback, but I maintained remission, fortunately. On nightmare at a time! I started using the cane again because all the hospitalizations associated with the shingles and its complications (five hospitalizations) left me a bit weak. I still use a cane as needed because I have wobbly days where walking on uneven or slanted surfaces poses some danger. On an unexpected note, since I adopted my cat Louie, I've seen improvement in my strength. I guess picking up 20 lbs. of deadweight several times a day has its benefits! Ha!

204 (double-left-click on photo to enlarge. It is an "L" for "Louie", formed out of a photo of the self-same cat!)

01-12-2010, 08:43 AM
Sangye, hi, I take 100 mg azathioprine/day. I also think I do have some kind of a flair, very heavy breathing after short activity. Managed to get an appointment 2 days from now with a doc at Vanc. General who is a little bit into WG. He is a pulmonary spec. Keep your fingers crossed like I do. I won't bother to take the new antibiotics, had it with the latest "infection" and it didn't do anything for me. Only now has it hit me what this disease is all abut. Cried like a baby when I could not get through to docs, handidart does not drive downtown in the afternoon, housedoc is on vacation til end of month etc. After a year I had a couple of good days, but other than that not so good.
Thanks for all your support here and I hope you look forward to many good days.

01-12-2010, 10:09 AM
Moyan, hope your getting back to feeling better.

01-12-2010, 10:13 AM
Thank you, I am sure I will. I have always been a "Fontana di Trevi", If I start crying there is no stopping :) Smiling while the wet rivers run down my face.

01-12-2010, 10:17 AM
I'll be very happy when you do get in to see a doc, Moyan. Can you tell how much more difficult your breathing is today compared to 1 or 2 weeks ago?

Also, have you contacted the VF to see if they can help you find a doc who knows more about Wegs? You really need a qualified rheumy overseeing your care.

01-12-2010, 11:41 AM
Not really much worse, it\s been going on for some time, maybe a month+. I have never in my life been really sick, so I am totally novice. Got an appointment this Wed with a pulminary who the nurses said specialized in WG. Of course VF would know, thanks. I am just waking up to what is necessary, thanks to chat here. I could get the nobelprize in naivity (not nativity).

01-12-2010, 11:45 AM
Been many years since I talked with my x. Slowly approaching now and he seems to have got over his depression, so we can actually laugh. He will drive me Wed since I can drive there but not walk from the parking. I thought muscle pain and fatigue was due to meds, but..........

01-12-2010, 11:52 AM
We all had to go through a period of adjusting to the reality of Wegs. I'm so glad you found our group to help guide you through this.

The pain and difficulty breathing are Wegs-- no way is that from the meds. Sometimes fatigue can be, but over time you'll get a better idea of what is active Wegs fatigue and what is drug fatigue.

01-12-2010, 11:57 AM
Thanks a billion Sangye, I am now gonna enjoy my new life by slopping in the recliner :)

01-12-2010, 01:33 PM
Next to beds recliners are my favorite piece of furniture.

01-12-2010, 03:44 PM
Hi Moyan, it was nice talking to you. I have arrived in Poland without any mishaps even though Heathrow and Warsaw are all snowed under. Being the holidays a lot of my docs were away as well. Since \i don't have good experience with ER, I went to an optometris for an eye exam. Over christmas I have lost my 20/20 vision and can't read the small print, also my eyes have bulged out and hurt. He checked thm out and fortunately has not found anything more that regular loss of vision and now \i finaly have to have reding glases for the small print. Still don't know why the eyes bulged out, could it be mtx?

01-12-2010, 11:15 PM
Have you had your thyroid level checked out Joanta? With hyperthyroidism you have increased nervousness, sweating, high pulse rate and the eyes sometmes bulge out. Or it is related to the WG.

01-13-2010, 03:09 AM
Jolanta, I lost track. Did anyone do a brain MRI or CT scan to make sure it's not Wegs behind the eyes?

(Also, I'm wondering if we can return to the thread topic. We really need a thread like this that's devoted to uplifting, successful stories about remission! I still have a hard time imagining that it's really possible. :) )

01-14-2010, 01:08 PM
No and no Sangye, but the optic did look behind my eye. I am actually going to see my eye specialist in March so will ask then.
Now back to the topic.
I have been feeling better and better all the time, even during the flares once I get back to medication they go away, I work full time, travel (with minor adjustments for walking slow and not too far)(oh and no dancing on the cruises), still am a general dogsbody and errand boy(girl) for my family. I have positive attitude, do not let my failures get me down and keep forging ahead. I watch for signs of slipping and get on the horn to my family doc - I no longer keep anything to myself no matter how trivial it seems. I take great comfort from my forum friends and am a lot more adjusted just by knowing that they are here for me, that is the best comfort of all. I have learned the word "no" and use it as needed. Jola we could use some vacuuming - No can't do feel painy. Oh that does feel good. I don't know what remission is or what it is all about, but if I am to feel like this for the rest of my life - I can live with that, just not worse thank you.