On Remission

[shimi]

Hey all ,
Not long ago i joined this forum and told my story to all of you,
Now i am happy to say that i went into remission as of today.

I still suffer from side effects of the prednison and cytoxan (swollen ankles) and more but hearing it from my
doctor made me very happy!

[Psyborg]

Congratulations :)

[Dirty Don]

Congrats!! I wanna be like you!!

[NicShaf]

Yay, Congrats!!!!!

[gunnyl]

Was told this week that I am in Remission! I still have to stay on the Cytoxan and Prednisone for 3 more months but my labs have been clear the last two visits and the Doc says I am in Remission!!

[annekat]

Was told this week that I am in Remission! I still have to stay on the Cytoxan and Prednisone for 3 more months but my labs have been clear the last two visits and the Doc says I am in Remission!!

So you have just been on Cytoxan and pred and they aren't putting you on a milder chemo as a maintenance drug, like methotrexate or azathioprine? I'm asking because my doc is talking about doing the same thing. He's not a WG specialist, so I was concerned, but I think I've seen one or two others on the forum who have done it this way, perhaps with some tapering of the Cytoxan before stopping completely. Just curious. I'm not in remission but could be getting close. I'm on Cytoxan and 12.5 mg. of pred, and Bactrim DS 3X/wk. In any case, congrats to you, too!

Anne

[gunnyl]

Okay, so My Rheumy wants to keep me on the cytoxan and pred for the full six months. According to her and my Wife's Rheumy as well (we have different Rheumy's in different towns, Long story). They both concur that in patients who go into remission who come off the cytoxan early there are a higher instance of relapse within the first two years. So they both agree that I should stay the course and then she will switch me to Imuran at that point. She feels that it's been proven over time to have better results than taking me off the cytoxan too early. So even though my labs are good and my UA is clear, I will maintain the course prescribed. I'm not a pill person and I hate the cytoxan and what it does to my body but I've looked at some of the data and have to agree with them. They are both really good Rheumatologists and I would be comfortable with either one. Long story short I have a friend whom I shared an office with in the late 90's and he was diagnosed with Weg as well back in 2006. (I know, what are the odds of that?) He told me that his Dr at the Mayo in Rochester did the same thing with him by going the full six months and for me to plan for that when I talked to him two months ago. His Dr heads Weg's research at the Mayo Clinic in Rochester MN so when my Rheumy gave me the same game plan I was expecting it and accepted it. Just have to dig down and keep the Positive Attitude flowing!! Also, if you're not comfortable with an answer from your Doctor, don't ever feel bad about getting a second opinion! It's your life! The first time I was Hospitalized they misdiagnosed me. I tell my rheumy when I talk to the wife's Rheumy and she doesn't mind. If a Doctor has a problem with you getting a second opinion, get another Doctor!

[mama2005]

congrats on the remission Hope all continues to go well

[annekat]

Thanks, gunnyl. You went into a pretty quick remission! So it sounds like your course of action with the meds is more like what I've read is typical and the accepted standard. Yes, I'm seriously considering a second opinion and have gotten advice from a couple people here who live in my area about whom to see. I'll see my doc today and maybe I'll be able to get more of a feel for what he is planning to do, and if I don't like the sound of it, I'll be motivated to look elsewhere.

Anne

[gunnyl]

Anne, yes I'm lucky to have responded very well to the treatments so far but I was in better than average shape when this whole thing started. I was also very lucky to have some key doctors in place whom were very knowledgeable about this disease and started the right course of treatments when they caught it. As a Marine (Retired now) I am very disciplined about taking my medications and I've got a rheumatologist whom I have a very good dialogue with ( I can email her anytime and I have her cell number for emergencies) she texts me lab results and med changes and has addressed concerns throughout this process. She put in a standing order with her staff that if I need a same day appt. I get it, no matter what's on the schedule. I wish everybody had the type of Doctor she is, in charge of their treatment. I know some others on here have that type of Doctor and as a Wegeners patient that's what you need. I wish you the best in your progress towards remission! Attitude is everything in my opinion and the more positive you are the better your recovery will be. But always remember that you are in charge of your care, ask questions and make sure you are comfortable with the answers. Doctors are not perfect and they don't have all the answers. The good ones know that on their own and are not afraid to seek advise from others. Motivated was a good answer, stay Motivated!

[Dryhill]

Congratulations shimi and gunnyl. It is really heartening news for all of us. :thumbsup:

[Sangye]

Congratulations to both of you! :hug3::hug3:

[elephant]

Great news to you guys!

[maria garcia]

Does the doctor go by your symptoms or lab work? Does the Anca's effect the decision of remmision?

[elephant]

Symptoms and Lab work. My Anca is still high but I am in remission...Medicine induced remission.

[Al]

Symptoms and Lab work. My Anca is still high but I am in remission...Medicine induced remission.

Good news for both of you, and, by extension, to all of us!

ANCA are not all bad players, apparently; many people can still have significant ANCA titers while in remission.

Al

[elephant]

Thanks Al, hope to stay in remission for the rest of my life!

[Al]

Thanks Al, hope to stay in remission for the rest of my life!

...And let's make that a long, long one!

Al

[vdub]

Good deal! :-)

I went into remission last July and was tapered off the mtx to zero. My last mtx pill was 1Sep. Almost 3 months have gone by now and still good. I think there are differing opinions on using mtx as maintenance. I have two rheumy's -- one said go to zero and one said stay at 6 for maintenace. I went with the opinion of the wg specialist, which was zero.

I had a biopsy on my two thyroid tumors yesterday. Only took 4 pokes in each tumor. Not a real big deal, but one of those things you are glad when it is over. I won't have any results for a couple weeks. No worries... I don't need my thyroid, so they can take it out.

The nerve conductivity test on my arm was completed about a week ago. As with the thyroid test, not a big deal, but you are glad when it's complete. It showed that I have nothing but a mild form of carpal tunnel. At least it's nothing associated with wg. I only have to wear a brace for a while.

All in all, feeling great now. Hope it continues for a while....

[renidrag]

I was deemed in remission on 6/30/10 after a 8/14/09 diagnosis. Off Prednisone on Valentine's Day in 2011 and Cytoxin in June. No maintenance drugs at all since. Still have neuropathy in lower legs and feet. Tried Imuran in March of 10 but did not agree with me that is why the longer than normal Cytoxin. Did the job. Congratulations Shimi and Gunny (thank your for your service)
Dale

[annekat]

I was deemed in remission on 6/30/10 after a 8/14/09 diagnosis. Off Prednisone on Valentine's Day in 2011 and Cytoxin in June. No maintenance drugs at all since. Still have neuropathy in lower legs and feet. Tried Imuran in March of 10 but did not agree with me that is why the longer than normal Cytoxin. Did the job. Congratulations Shimi and Gunny (thank your for your service)
Dale

Thanks for that. I knew I'd seen posts from you before about continuing Cytoxan for a year or more and then stopping. Did you taper it at all toward the end? I've seen a couple mentions of tapering Cytoxan on this forum, though I know it's not done that often. That seems to be what my doc wants to do as maintenance instead of even trying Imuran or methotrexate. He is not a Wegs specialist. I've been on Cytoxan for 7 months now and am doing very well. Just got blood done and don't know results yet. I'm not in remission but feel I could be getting close. I'm on 10 mg. pred. I mentioned the other maintenance drugs to my doc and he didn't seem to think they were necessary. I'm aware that Cytoxan is not considered effective beyond a certain lowering of dose per body weight. All along, I've been at slightly lower than the recommended dose, except for one brief period toward the beginning where I had special problems. But I have done so well on it that I feel OK about it. If I feel things are not going right, I do have recommendations about docs from other forum members in my area.

Again, congrats to those here who have recently gone into remission!

Anne

[RudiK]

Congratulations Shimi, let's hope you stay in remission. I relate very much to what Gunny said. I'm very disciplined, follow doctors orders, and kept a good attitude about it all. I was diagnosed in April, declared to be in remission in September, stayed on cytox for another four weeks, and I'm now on 150mg azathioprine and 7.5 mg preds.

[drz]

Congratulations Shimi, let's hope you stay in remission. I relate very much to what Gunny said. I'm very disciplined, follow doctors orders, and kept a good attitude about it all. I was diagnosed in April, declared to be in remission in September, stayed on cytox for another four weeks, and I'm now on 150mg azathioprine and 7.5 mg preds.


My remission is rather similar to Rudik's. Diagnosed April 2010, considered in drug induced remission in October, flared in November, back in remission in January, flared again in March and considered in remission since May of this year. The last six months is my record for being in remission and I hope to stretch it out awhile longer.

I tapered on Cytoxan last year only because of toxic reactions and they kept cutting dosage till it got so low it wasn't working at all and then they switched to azathioprine. Currently on 175 azathioprine and 5 mg pred and doing well except some joint pain in elbows recently started. This has happened before during tapering of pred but these pains usually went away in a few days. The plan is to continue current meds for another year and reassess then unless there is another flare in interim.

[annekat]

I tapered on Cytoxan last year only because of toxic reactions and they kept cutting dosage till it got so low it wasn't working at all and then they switched to azathioprine.

drz.

Do you remember how low they went on the Cytoxan before it stopped working at all? I'm asking in case my Dr. tries to make me taper that low instead of switching to a recognized maintenance drug. I realize our body weights are probably different, which would affect the answer, but I can at least have something to go on. I weigh about 140.

Anne

[drz]

drz.

Do you remember how low they went on the Cytoxan before it stopped working at all? I'm asking in case my Dr. tries to make me taper that low instead of switching to a recognized maintenance drug. I realize our body weights are probably different, which would affect the answer, but I can at least have something to go on. I weigh about 140.
Anne

I started out with a couple Cytoxan IV sessions, switched to oral Cytoxan, ramped up slowly to 200, slowly back down to 50 again with several hiatuses along the way, usually a few days to a couple weeks due to reduced WBC and some times infections. I was at 50 when they gave up on it and switched to Azathioprine. Same routine of starting at 50 with ramp up slowly to 150, bump to 200 for flare, and then back off to 175 due to elevated liver tests which is current dosage and liver enzymes still in normal range. Ask for liver enzyme test before you start Azathioprine if you can since they can ramp up dosage quicker if they know your body can metabolize it OK but you still need to monitor if your body can tolerate it well so you feel OK taking it. Not everyone can.

[annekat]

I started out with a couple Cytoxan IV sessions, switched to oral Cytoxan, ramped up slowly to 200, slowly back down to 50 again with several hiatuses along the way, usually a few days to a couple weeks due to reduced WBC and some times infections. I was at 50 when they gave up on it and switched to Azathioprine. Same routine of starting at 50 with ramp up slowly to 150, bump to 200 for flare, and then back off to 175 due to elevated liver tests which is current dosage and liver enzymes still in normal range. Ask for liver enzyme test before you start Azathioprine if you can since they can ramp up dosage quicker if they know your body can metabolize it OK but you still need to monitor if your body can tolerate it well so you feel OK taking it. Not everyone can.

Thanks for that. At my weight of 140, I ramped up to 100 of oral, which is a tad low, and then briefly up to 125 for a special problem, and then back down to 100. The slightly low dose has been due to the doc's concerns about toxicity, and because I'm "not a big person". The 100mg has actually worked well over the last 7 months to clear up my symptoms. I think he wants me to go to 75 in about a month. If he tries to taper me to 50, considering that you probably weigh more than I, I will consider that to be the bare minimum that might or might not do anything at all. My doc is not a WG specialist, but there aren't any within 700 miles of here. He knows about the other maintenance drugs, but sees this as a viable way to go. Since I'm doing well, it's hard to argue, but if that changes, believe me, I will be proactive about it. Thanks also for the advice on the Azathioprine, in case I end up doing that.

Anne