Flare/remission question

[jola57]

Duane I take mtx on sunday morning and all day stay close to the bathroom, then for the next 3 days I feel like cr*py just like you. It seems by the time I feel better its time to take it again. My liver is acting up so my rheumy took me down to 4 pills mtx -took 6 before. My hemoglobin is fine though so make sure they check you out both up and down. You should have a gastroscopy, cystoscopy and colonoscopy to rule out bleeding uless its a byproduct of the meds you take.

[DuaneHart]

I do have Crohns disease and Ulcerative Colitis that came out of remission around August of 2008 after 13 years. In April or May 2009 was when they thought I had Wegs and was put on Methotrexate and Prednisone which stopped the bleeding from the colitis. I had a bronchoscopy about two weeks ago and everything looked good. I am seeing Dr Specks who is a Pulmonologist who is a Wegs specialist at Mayo in Rochester and he thinks that it may not be wegs but are still trying to figure out what is going on with me. It is just very frustrating and am just soooo tired of feeling like this. I think Mayo is the place to be though and I have total faith in all of my "ologists" that I have been seeing. Someday it will all come together ;-)

[Sangye]

You're definitely in the right hands with Dr Specks, a Wegs specialist. They'll figure it out.

[Doug]

[SIDEBAR to Jolanta- That's a great new avatar!]

[jola57]

Thanks Doug, I thought you would like it.
Duane you are indeed in good hands

[Momof3]

Thank you so much for this post, it expresses exactly how I feel-confused...not sure what to look for and what the goal is. I was diagnosed last May and started reading this blog, someone posted that they had WG's and had been in med free remission for 15 years-of course I thought, that's what I want- med free remission for a long time. Now, months later, still unable to titrate my prednisone down even by 1mg and increasing my methotrexate to the max I am still having shortness of breath,cough. I talked with my doc about rituxiban and she said I hadn't failed on methotrexate. She is saying it will take 3-5 years of treatment to achieve remission, it is all so confusing and I am an RN so it should make more sense. I guess I need to stop looking for the switch to turn off on WG's and realize it is a process, constantly fluctuating. It is hard to know when it is just a fluctuation or a "flare" that should cause alarm and send me into the MD. Thanks for all the positives on this site.
*chocolate covered espresso beans helped me get through college-they are great!

[Doug]

(Yes, Jolanta, it makes you come across as wise, thoughtful, and to the point! I smile each time I see it)

[elephant]

Hi Momof3, I'm a RN too and WG is a very confusing disease, even for the docs. Took them 30 years to diagnose me. Did the Rheumy doc start you with cytoxan first? What were your symptoms? Whenever I have shortness of breath I call my pulmonologist and they usually do a lung function test or CT scan. Then if it's a big concern they will call my Rheumy at the Cleveland Clinic, I live in South Carolina. Methotrexate works pretty fast. Methotrexate is usuallya maintence drug after you have taken cytoxan. They use Methotrexate for mild/limited WG too. As you may know this forum has helped me too.

[coffeelover]

Duane,

I will be in Rochester on Dec 2nd to visit with an ENT specialist who also specialized in WEgs. His name is Eric Moore. Do you know anything about him?
I am sorry you are having such difficulty. If it works out I would love to meet up with you and your wife again. Dennis will be with me as well. My appt is at 2 ish.

Lisa

[Sangye]

Momof3,
Surely it wasn't a Wegs specialist who told you it'll take 3-5 yrs to achieve remission? Based on what? Some people go into remission after a few months of treatment, while others take way longer than 5 years. Wegs itself is highly variable, and each person's response to treatment is as well. It isn't like cancer, where there is some predictability.

If you haven't been able to reduce your pred, and you're still having shortness of breath and cough, it seems to me that your treatment may need to be adjusted. Maybe mtx isn't strong enough. It isn't usually used to induce remission unless someone has a very mild case of Wegs.