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!