Remission?

[Dorothea]

I was diagnosed with Wegeners a year ago today. (10/18/13) Does anyone know how long it can take to go into remission? I'm on Methotrexate (2.5mg.) 8 tablets once a week.

[Rose]

Hi Dorothea

Although everyone responds differently to treatment and some can go into remission faster than others, i would have thought that by after a year of the same treatment you should be in remission or some degree of remission. Is your condition improving? If there has been no improvement then the doctors should consider other treatment options.

Rose

[gilders]

Hi Dorothea,
As Rose said, people respond to treatment and go in to remission quicker than others.
I've always had quite severe relapses (i.e. flares up quickly and involves kidneys), but fortunately the treatment has managed to get me in remission fairly quickly (a few months at a guess).
That was until my latest (current) relapse. I started treatment a year ago and don't believe I'm in remission yet. My replacement Dr thinks I am, but I have all the tell tale symptoms that show other wise.
I also agree that if there's been no improvement within 12 months then another form of treatment has to be considered.

[annekat]

"Remission" is hard to define, as when many of us think we may be in it, we may have a little flare or so, if we get under a little stress or try to taper our meds. But I agree with the others that after a year you should have seen some solid improvement in your symptoms and your energy levels; otherwise you may need stronger treatment. Knowing you are on MTX makes me think you may have mainly sinus/nose/ear issues, or what some have called "limited" Wegeners, though we don't like to use that term much because it minimizes the potential severity and seriousness of what you have. Sinus involvement over a period of time can cause a lot of damage, such as erosion of the thin sinus bones and permanent eustachian tube dysfunction, and the symptoms may continue due to some of this damage and make you feel like you aren't in remission or progressing well, when your lab results may show a lot of improvement. I hope that helps.

BTW, your dose of MTX is a pretty good one; mine is only 15mg./wk vs your 20mg/wk. I was at only 10mg. for awhile which proved to be too little, and the 15mg. has held me pretty steady except for moderate flaring in the winter which was controlled by an increase in pred. So after 3.5 years, although I feel much better overall and sometimes almost "normal", and my labs are not bad, I still cannot say I'm in remission. Stress has a lot to do with it, I think, and those with an easygoing lifestyle who don't have to work too hard to make ends meet will have an easier time reaching remission.

[Dorothea]

Thank you all for responding. I was on prednisone for 6 months. (My doctor doesn't want people on it for long periods of time) You're right, Wegeners started in my sinuses and I had to have tubes put in my ears last year also.I'm having issues with blood in my urine now. I'm really glad I found you guys! Sometimes I do feel alone in this battle, I think my grown kids don't think there's anything wrong with me. And one of them is an RN! I guess mom's aren't supposed to get sick.Lol!! Thanks again for responding! Have a pain free day!😊

[Pete]

Hi Dorothea,

Blood in the urine can be a symptom of kidney involvement. Is the doctor treating your disease a specialist in Vasculitis? If not, finding one would probably provide treatment that leads to remission. You can search for specialists at the Vasculitis Foundation's website. Looks like you're about midway between Cleveland Clinic (where I go) and Mayo Clinic.

Good luck!

[Dorothea]

Hi Pete, I have a Rheumatologist that specializes in autoimmune diseases.

[Dorothea]

Pete, how long have you had kidney involvement?

[MikeG-2012]

I was diagnosed with Wegeners a year ago today. (10/18/13) Does anyone know how long it can take to go into remission? I'm on Methotrexate (2.5mg.) 8 tablets once a week.

I think remission is like a lot of other factors with this disease. One of my docs told me once, "There isn't a book to tell us about Wegeners, every patient writes his/her own book."

[Dorothea]

Thanks Mike G-2012 for the great insight!