Drug free remission

[Alias]

I would be interested in hearing from anyone who is in drug free remission. As far as I can tell there is not really any medical consensus regarding how long to continue maintenance meds, such as MTX. If you are off of maintenance meds, how long has it been, what meds were you taking, and have your symptoms remained stable? I am injecting 15 - 25mg of MTX weekly and have been doing that for the better part of three years. I have "limited" GPA, i.e. no renal or lung involvement, so compared to many I have been lightly touched by this illness. I would love to get off the meds. I need to check in with a rheumatologist, since my meds and labs are handled locally by my PCP, but it would be great to know about your experiences or what advice you have heard.

[blu4runner]

I went 18 months drug free and then I had a flare. I was on Rituximab infusions and prednisone. It was part of a clinical trail. Had 4 weekly infusions and then an infusion each 3 months for 2 years and tapered prednisone over the time period. 18 months of no drugs was nice but since the flare I get rituximab infusions every 4 months to maintain remission

[Rose]

This is something I had intended to ask the group myself.

I do have lung and kidney involvement. I take Cellcept 750mgs x 2 daily and have done so since January 2009. It took me a few years to reduce the prednisone but eventually got down to 2.5mgs .... which I have taken as a maintenance dose daily since early 2013. I have been stable on this protocol for over 8 years with the exception of a few minor flares. Increasing oral pred for a few weeks was enough to dampen the minor flares and I quickly returned to my maintenance dose. I have had one major flare and received IV cortisone 500mgs x 3 days which worked well. I was soon back in remission and recommenced maintenance treatment

My Rheumatologist has told me I must stay on meds for life as he feels that a major flare whilst not on meds would cause more damage to my already damaged lungs and kidneys. However my Pulmonologist was quite surprised by this as was my Nephrologist.

So yes, I would be very interested in what the medical consensus is among doctors treating members of this support group as to how long they should stay on maintenance meds. Have you, like me, been told that you should stay on them for life?

Rose

[Alias]

I've been told by one rheumatologist that I should stay on MTX for as long as I am tolerating it well, because there is no definitive research to tell us what the optimal length of treatment is. I suppose it depends on the individual and the particular features of his/her disease. We know that the relapse rate is fairly high for those who go off meds, but I don't know how that rate relates to whether one has limited or more severe disease, etc. I have not had any true flares that I know of, but I think MTX makes me a bit ill. My labs are stable but for fluctuations in liver enzymes. My day to day symptoms are all due to damage done to sinuses, nose and ears - - no active disease. I'd love to quit the meds and the constant vigilance over labs. I guess it's a small price to pay for keeping disease at bay, but it's still something I'd like to put behind me.

[JeanMarie]

I had my last pred on 7/10/16 after a very slow taper. My last RTX was on 7/1/14. No other drugs since the last pred. So far so good but of course, things can change in a heart beat.

[Alias]

Thanks for the replies. For those going to the symposium in Chicago the question of how long to continue maintenance meds might be good to bring up. (I have not ruled out the idea of going myself.)

[MikeG-2012]

Thanks for the replies. For those going to the symposium in Chicago the question of how long to continue maintenance meds might be good to bring up. (I have not ruled out the idea of going myself.)

Would love to see you there Tom!

[Marius]

My Rheumatologist is also of the opinion that as long as I tolerate the meds well I should stay on them. He says to take a chance and face a full blown flare is not worth it.

[MikeG-2012]

My Rheumatologist is also of the opinion that as long as I tolerate the meds well I should stay on them. He says to take a chance and face a full blown flare is not worth it.

Ditto for my rheumy and my treatments.

[Pete]

Hey Mike,

I can't make the Symposium this year. Would it be possible for you or other attendees to pose the following?

1. What are the long-term effects of low-dose prednisone? I've been at 5 mg for three years now. Also, what can we do to minimize any effects?

2. For those of us who were on cytoxan for an extended time, what screenings should we have to catch bladder cancer early? I'm thinking of having periodic cystoscopies in addition to my bi-monthly urinalysis. I took 150 mg/day for 16 months.

Thanks!!!

[drz]

My Rheumatologist is also of the opinion that as long as I tolerate the meds well I should stay on them. He says to take a chance and face a full blown flare is not worth it.

same for me

[Bing505z]

I do not take maintenance meds. I was diagnosed with sinus, lung, and renal involvement and began with 80mg prednisone and 20mg cytoxan treatment. I was on this treatment for a month and had to take more drugs to treat what the prednisone was doing. Nope.. I am not one of those delusional about prednisone. When I was united with my currrent Doctor, he took me off Cytoxan and began to drop the prednisone and I started Rituxan. Here is how i dropped the prednisone:

1 week – 60 mg
2 week – 50 mg
3 week – 40 mg
4 week – 30 mg
5 week – 20 mg
6 week – 10 mg
7 week – 5 mg
8 week – 2.5 mg
9 week – no more s*it prednisone

Yup, it hurt...but sometimes things hurt and I pushed through it. It is what it is...

My Doctor had planned for me to have a kidney biopsy, but blood tests a month after my 4 Rituxan treatments showed I no longer needed the biospy and my kidneys turned around. I had sinus surgery and lung surgery after the treatments and I lost the upper lobe of my right lung. It took me several months to walk again and it took me 6 months to get back to work.

My Doctor works with some top guru at the Cleveland Clinic, and his approach is to treat based on what I am feeling, not what my blood numbers show. From the material I have read, I do not want to take any of the drugs available for maintenance, all I need is Rituxan. I am interested in drugs in trials now that target the disease, the immune system, the actual problem ....not what is just going to get me by for a while or just to treat the symptoms. That is why I am going to this symposium....to see what research is going to bring us. When I told my Doc that I was going, he did tell me that I was going to hear a lot of technical yada yada that would mean nada to me...well that is fine also since I am making vacation out of it ..... gonna get around Chicago a bit with the family and have a little fun, then fly out on Monday to Florida for some fun in the sun on the beach and some fireworks on the 4th July. Cheers! and see ya in Chicago!

[blu4runner]

I think you will learn quite a bit at the symposium. Most of the presenters are aware of their audience and present the information in a manner that we can understand. I have learned lots at the 2 prior symposiums and look forward to this meeting as well.

[Green Grass & High Tides]

Hey Weggies!

If possible, I could use some help.

I hope everyone is doing well. Excellent / helpful thread. Thanks much. it is timely for me.
I refused maintenance medication a few months ago and my doctor gave me an ultimatum last week!


1998-2000 misdiagnosed as Lyme Disease (no meds / no insurance, , Gi, kidney / lung and CNS but the CNS was misunderstood by doc then). Narrowly survived.
2000-2003 Biopsy, Kidney, Lung, Gi and Intense Joint Pain led to Diagnosis of Wegs. Got Insurance through job. Could only stand 30 seconds at a time but faked it enough to get a job. Took Pred and max dose MTX.

2004-2014 No maintenance meds for ten years. Occasional pred and spinal epidurals for CNS pain. Ten years didn't happen on accident. I quit my job in Jersey, moved into a Zen Center in the Mountains, quit meat and ate an anti-inflammatory diet with mostly organic veggies, increased anabolic rate to assist the rate of cellular repair and mostly ignored wegeners symptoms through sheer denial!

2014 major flare, brain, lung, Gi, sinus, eyes, ears... paralyzed left side, in hospital took 1000 mg Solumedrol per day / 3 days. Psychotic! That stopped acute disease but caused Adverse Glucocorticoid Reaction and intense medication sensitivity. Haven't been the same since but glad I survived the flare.

2014 to Feb 2017 - Rituxan, Cytoxan, Azothiaprine, Methotrexate, Cellcept, Prednisone. Regained most movement but no remission. Had allergic reactions to Pred, MTX and Cellcept. That is really painful.

Prednisone: Got pred down from 80 mg to 5 mg which must be offset with Xanax which I hate. Tried a zillion meds to avoid xanax but alprazolam negates the negative stimulatory effect on the HPA axis which helps reduce immune system over-activity. I found out that most docs, even specialists know very little about exactly how prednisone (Glucocorticoids) work on the body and their positive and negative effects on auto-immune disorders. My doctors were fantastic about learning and helping me find ways to manage negative steroid reactions. Med students turned out to be a great resource as well. Regardless, even 5 mg pred makes me sick every morning but it's at a low level I can manage.

Allergic Reactions: Methotrexate caused ulcers from my mouth to large intestine. Cellcept caused a severe sickness and vertigo, ughh. Rituxan made me very sick. Cytoxan made me ungodly sick.

Other Meds: Vitamin B Complex, C, D. Flonase, Folic Acid. Provigil helps with major fatigue occasionally, if I'm rested (had wegs stroke, neurologist suggested this one but it works for wegs fatigue too IF rested.) Propranolol helps w >BP from pred. Zofran for regular nausea. Granisetron (Kytril) for severe nausea (best nausea med I've ever found). Omeprazole to reduce GI acid.

Charting: I chart my symptoms every morning so that I can see exactly what meds work and what meds don't work. I can also see any trend upward of disease activity. This also helps me to not think about myself and the disease so much.

Doctors Ultimatum!
I told my Rheumy that I wanted to live holistically stay off meds and monitor symptoms; if a trend is spotted in my charting I would take some maintenance meds. He said, "You have to be on a maintenance medication. I don't want to watch you die. If you are going to refuse treatment you have to find another doctor. You will have a sudden flare and like you have in the past and monitoring trends is important but won't help with sudden flares." I said, "WTF!?"

Last week labs: C-ANCA are 1:40, PR3 is near 70 or 80. C-Reactive Protein is finally normal.

Rituxan scheduled in two days. 500 mg / 6 months.

Am I crazy to want to stop maintenance meds?
Is my doctor an asshole?
Or a brilliant wizard saving my life?

Appreciatively,
Tom

[Marius]

Tom, my humble opinion is that your doctor is right. The problem is that a sudden flare (like you had already!) can be very damaging and hard to bring back under control - if at all. A reasonably low dosage of maintenance meds to prevent this is in my mind a good approach.

[Pete]

Tom,

i also think your doc is right. If you can't get into remission, at least try to get to stability...

See my signature.

[Bing505z]

I think you will learn quite a bit at the symposium. Most of the presenters are aware of their audience and present the information in a manner that we can understand. I have learned lots at the 2 prior symposiums and look forward to this meeting as well.


I do hope so...looking forward to it!

[Bing505z]

If you are in clinical remission, and you know how you feel and the signs from the previous...if you feel you can. Is your Doc and asshole? Well if he isn't going out of his way to do anything and everything to get you in remission..then he is an asshole. For me I, depending on his tone..and..well in general most docs irritate me, I would maybe let it slide once talking to me like that...but the second time...I promise not even Jesus could help him..and the attorney fees would be well worth it....

I see you have 20 years of this...so how are you feeling now? How is life in general for you?

[Bing505z]

Hey Mike,

I can't make the Symposium this year. Would it be possible for you or other attendees to pose the following?

1. What are the long-term effects of low-dose prednisone? I've been at 5 mg for three years now. Also, what can we do to minimize any effects?

2. For those of us who were on cytoxan for an extended time, what screenings should we have to catch bladder cancer early? I'm thinking of having periodic cystoscopies in addition to my bi-monthly urinalysis. I took 150 mg/day for 16 months.

Thanks!!!

Pete,

While on Cytoxan did your Doc have you take furosemide along with it to keep the pipes flushed?

[Pete]

Pete,

While on Cytoxan did your Doc have you take furosemide along with it to keep the pipes flushed?

No. I was only told to keep well hydrated, which I did.

[me2]

I think my doc said one time he wants to see me go 2 years without a flare (he might have said three) before getting off maintanence meds. I am inclined to do it his way as I had a flare when I tried to reduce meds on my own just a few months ago. It was really bad and I lost several months of doing anything - and, really suffered. I'm tired of getting beat up by this disease. I'm going to take my chances with the meds for a while.

[Green Grass & High Tides]

Feedback appreciated. Thx.
I feel ok. No remission but not in a flare either. Sick every day but grateful to have a day. I think you're right. The docs tone was assertive but caring so I thanked him and took the Rituxan. Got real sick from that and the solu medrol but am ok now. Life in general is a treasure if I stay in the moment, accept limitations and stick to my regimen.

[RudiK]

In remission for 2years, and off meds for 7 months. So far, so good, except all the aches and pains associated with old age are now popping up.


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