Aiming for drug free remission...

[Alias]

After being on MTX and leucovorin for several years, I am aiming for drug free remission. After having been on a holiday from MTX for about a month, I can say that I have not felt this good in quite a long time. I have "limited" GPA, and still have symptoms in my ears and nose, but those symptoms are due to the damage done by my initial, acute phase of illness. I never had lung or kidney involvement, so I have been pretty lightly touched by this crazy illness compared to many others on this forum. Nothing in my labs suggests any ongoing, active illness. I certainly know I am facing a risk of recurrence, but also that the risk is pretty much unquantifiable. I am just so tired of my self administered injections, the labs, the constant vigilance and worry. Now the fact that I feel noticeably better without the meds might be at least partly psychological, but in any case I do feel better.

I would be interested in hearing from others who are in or are attempting drug free remission... success? failure? issues?

Thanks.

[me2]

I had a 20 year drug free remission after two years of treatment.

[gilders]

I have been in drug free remission a few times, although I have eventually relapsed each time. My periods in remission have grown each time between relapses. I have lived with this illness for the last 23 years with severe kidney damage and mild lung damage. It's hard to say if my choice of achieving drug free remission was good or bad. Maybe if I'd stuck with the drugs I wouldn't have had as many relapses, but not having a break from immunosuppressive drugs for 23 years could have caused more complications. I already have a problem with immature, odd shaped red blood cells which may be due to long term Azathioprine.
My latest relapse was much harder to get in remission using my usual treatment of azathioprine and prednisone. It is as though the effectiveness of Aza has run out after many years of use.
Overall, I would recommend trying drug free remission with close monitoring.
I have been warned that I am at far greater risk after my kidney transplant (hopefully soon) due to many years of being immunosuppressed.
My last Rituximab infusion was over 6 months ago and I'm not on pred or other immunosuppressive treatment, so although I take over 20 tablets per day, I consider myself in drug free remission.

[Alias]

Thanks for the reply. It seems that there is no consensus on how long maintenance drugs should be continued and that every case is different anyway. There is some suggestion that those with limited or non-severe cases (not involving vital organs) have a better shot at sustained remission, so I am hopeful. Best of luck with your treatment!

[vdub]

I really hope you make it, Tom! I went off mtx and pred last March or April about the time we were at the Iditarod with you. I had a few good months, but then went down hill. I hurt a lot and I'm often fatigued, but I have avoided my rheumy and PCP. I know they'll just put me on more drugs that don't work very well and have a lot of side effects, so I just grin and bear it -- don't care much anymore.

I can't avoid the cardiologist, tho. The stupid pacemaker they put in me last June has a wireless connection back to the hospital and they monitor it all the time for changes. Last week I was a 1,000 miles away in CA and they called to tell me my heart was racing. Sheeeezee... They put the damn pacemaker in because my heart was too slow and now they want me to take drugs because my heart is racing. They phoned the scripted into the nearest walgreens. That's really good service and actually pretty cool, but really? Can't you guys just leave me alone for a while? What's wrong with a racing heart?

My next hospital stay is scheduled for 7Nov. New knee -- my third one. No, I don't have 3 legs. The stupid knee they put in this time last year came unglued. Sheeezee.... 3rd total knee replacement -- no fun at all.

Enough ranting for now.

[Susan55]

I had a 20 year drug free remission after two years of treatment.
Wow 20 yrs! that's such good news. There is hope :) I have limited gpa so I am hoping to be like you, let's just get this under control and be able to feel good and more forward once again. My first blood work for the next year is tomorrow. I am still learning what all these blood test mean and what it can tell the doctor.

[Pete]

Vdub, you've become our bionic man! ;-)

[Alysia]

vdub, do you think that its the wg causing your fatigue etc. or other issues ? Are you still in remision ? I think that you shouldn't avoid your rheumy or neglecting getting the right treatment. Please forgive me for behaving like a worried mom. I care about you. Honestly.

[vdub]

Thanks, Alysia... Weg's is just one of my problems. Mayo believed that the fatigue and muscle pain was from fibromyalgia and its a constant battle, but better now that I'm on the right drugs. But, there is still something else that is attacking my central nervous system. Most docs agree that the cns issues aren't wegs related and aren't coincidental.

Remember the "sinus infection" that most all of us had prior to being dx'ed? I've been having that again for the past couple months, but its not to bad, so I just deal with it.

[Alysia]

Thanks, Alysia... Weg's is just one of my problems. Mayo believed that the fatigue and muscle pain was from fibromyalgia and its a constant battle, but better now that I'm on the right drugs. But, there is still something else that is attacking my central nervous system. Most docs agree that the cns issues aren't wegs related and aren't coincidental.

Remember the "sinus infection" that most all of us had prior to being dx'ed? I've been having that again for the past couple months, but its not to bad, so I just deal with it.

Come on @vdub (https://www.wegeners-granulomatosis.com/forum/member.php?u=1136), dont let the dumb docs fool you. There is NO sinus infection in Fybromyalgia ! And cns issues are too serious to dismiss like that. Get a second opinion. Besides, you know yourself better then any dr. What do YOU think ?

I would say that your wg is smoldering if not already flaring. I would send the mayo docs straight to hell and find a decent dr and get a decent treatment.

I might be wrong. @mishb (https://www.wegeners-granulomatosis.com/forum/member.php?u=1164) marta what do you think ?
Others around, what do you think ?

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[Pete]

Come on @vdub (https://www.wegeners-granulomatosis.com/forum/member.php?u=1136), dont let the dumb docs fool you. There is NO sinus infection in Fybromyalgia ! And cns issues are too serious to dismiss like that. Get a second opinion. Besides, you know yourself better then any dr. What do YOU think ?

I would say that your wg is smoldering if not already flaring. I would send the mayo docs straight to hell and find a decent dr and get a decent treatment.

I might be wrong. @mishb (https://www.wegeners-granulomatosis.com/forum/member.php?u=1164) @marta (https://www.wegeners-granulomatosis.com/forum/member.php?u=937) what do you think ?
Others around, what do you think ?

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Alysia: I don't think I'd drop my Mayo docs out of hand. They are among the best. However, vdub I think I'd want to get together with them and a great neurologist (all in the same meeting) and have an in-depth discussion, if you haven't done so already.

[vdub]

At this point, I just want a break from all of it for a while. Even a couple months would be great, so that's what I'm shooting for.

[mishb]

I tend to agree with Alysia, but I don't think I would get rid of your specialists so quickly.

I also don't blame you vdub, for wanting a few months off, however, as Alysia has already pointed out that your know your body better than anyone, please please, listen to it over the next few months so that the break doesn't turn nasty.

Fingers crossed for the couple of months to last longer than anticipated

[John S]

I don't think that wegs is going to take any time off for me. I've been doing well since the Rituxin infusions back in May. I don't like the drugs, etc but right mow I'm having a flare so I think my medicines are the lesser of evils.

[HazelEyed]

A drug free remission is my goal as well. Had my second round of rituxan today. I had one two weeks ago and before that had it 10 months ago. I'm on no other drugs except for the rituxan and am contemplating going drug free until I flare provided labs are good. My rheumy wants me to do rituxan every 6 mos but if I can extend that 6 mos to 1 year or longer I would feel better about taking this powerful drug. Previously I was on prednisone, cellcept, plaquenil, dapasone. I do feel that rituxan works wonder but am wondering if others have achieved drug free remission after a few rounds of rituxan.


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[Alias]

I would just like to emphasize that every case is different, and the ability to achieve drug free remission probably depends on many factors.

Best to all of you.

[MikeG-2012]

A drug free remission is my goal as well. Had my second round of rituxan today. I had one two weeks ago and before that had it 10 months ago. I'm on no other drugs except for the rituxan and am contemplating going drug free until I flare provided labs are good. My rheumy wants me to do rituxan every 6 mos but if I can extend that 6 mos to 1 year or longer I would feel better about taking this powerful drug. Previously I was on prednisone, cellcept, plaquenil, dapasone. I do feel that rituxan works wonder but am wondering if others have achieved drug free remission after a few rounds of rituxan.

Potency is certainly objective. I had far too many symptoms while on pred and other meds!! I flared up when Mychophenolate failed, and believe me, you don't want to flare up. I was told that flare ups are cumulative. The damage done isn't always as bad, but it adds on to the last set.

I had a bad enough flare that I am going to stay on RTX as long as insurance will keep paying for it, or there is another miracle drug found.

For me, labs were not always that conclusive and I would rather be safe than sorry later.

Just my .02 this morning.

[Alias]

Absolutely if you have objective or subjective evidence of disease activity, then it's not time to consider stopping any meds that are helping you. In my case I think the meds were causing more problems than they were preventing, just in terms of overall well being. Time will tell I guess. For now, I definitely feel happier, stronger, and more energetic without them. Fingers crossed.

[Alysia]

Potency is certainly objective. I had far too many symptoms while on pred and other meds!! I flared up when Mychophenolate failed, and believe me, you don't want to flare up. I was told that flare ups are cumulative. The damage done isn't always as bad, but it adds on to the last set.

I had a bad enough flare that I am going to stay on RTX as long as insurance will keep paying for it, or there is another miracle drug found.

For me, labs were not always that conclusive and I would rather be safe than sorry later.

Just my .02 this morning.

I am with you. Not going to stop any med. I was late only 6 weeks for rtx and flared in my eyes (which were not involved before).

[woz]

I have been on aza for over 4 years, my reumy has got me on a slow taper to see if I can be drug free, every 2 months I am dropping 25mg of aza, I hope to be drug free by February, I have my blood work taken each month just to be sure.

Live to dream......Dream to live.

Regards Woz.

[im so blessed]

I was on imuran for 6 years, then added mtx. I took them together for 10 years. Then last august i did rituxan, and again in february. I have not been on anything but 5mg of pred since. It was def time for me to have abreak from the meds after 16 years never being off. I am just riding this out and enjoying it so so much!!! My labs look better than ever. But more importantly, i do not have any wegs symptoms. I passed the 6 month mark for the rituxan in august, so im holding my breath it keeps going!