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View Full Version : Suggestions for looking at comparisons of different medicines for Weg?



Wegetarian
08-14-2013, 08:57 PM
I've been doing some research online to look at the different medicines available for me. I have found some good resources on better understanding how individual meds work. Drz made a nice post (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3053-links-good-over-view-what-gpa-how-treated.html) from where I could find some good info.

However if there are any good comparisons of the medicines it would make it easier for me to understand what would be optimal. Of course I'll pay a lot of attention to what my specialist has to say, but I like to be well prepared and also I've read some threads here where the meds might have been sub-optimal for the patient.

For what its worth my condition is very light and it should be isolated only to my nose. So I suppose for instance Cyclophosphamide is out of the question due to the adverse side effects and some less powerful medicine should hopefully be enough.

I guess I'm mostly interested in how well the different medicines treat our condition and alleviate the symptoms (I'd like to cut down my steroid intake) and how long it will take for them to start effecting and when full effect is expected to be reached and if possible to get some estimate on how well they will keep us from getting symptoms again.

Dunno if there already is that kind of comparisons, if not I suppose I could try to post what I find here to at least help the next person out. Obv I'm no medical expert and I'm also just recently diagnosed so I have very limited knowledge about all of this.

Pete
08-14-2013, 11:28 PM
Hello Wegetarian,

As far as meds are concerned, your docs (hopefully a Vasculitis specialist) will determine your treatment regimen. I was also told I had "mild" wegs. My initial treatment was 150 mg/day of cyclophosphamide (ctx), 60 mg/day of prednisone, and a daily bactrim. For the first year on ctx, I had no side effects from it at all. (My wife attributes this to my "cast iron" stomach.). After about 16 months on ctx, I had my first UTI. I had a cystoscopy to rule out other problems (bladder cancer, hemorrhagic cystitis, etc.) and it was negative. After this, I decided to find a wegs specialist. She changed my immunosuppressant to 15 mg/week of methotrexate and began weaning me off prednisone (and I've been off it for almost five months).

My wegs specialist told me that their standard protocol (at Cleveland Clinic) is 2-4 months of either ctx or rituximab to knock down the disease coupled with steroids and bactrim. Once the disease is under control, they go to a milder immunosuppressant, begin tapering off the steroids, and reduce the bactrim

While most drugs do have possible side effects, you may or may not have them.

Good luck and better health!

annekat
08-15-2013, 05:39 AM
I know there are people on here with only nose involvement, and who might be said to have "light" Wegs, who were started on methotrexate, pred and probably Bactrim. For others, such as me, methotrexate is used as a maintenance drug after having been on one of the stronger drugs like CTX or RTX. There are other choices of milder, maintenance type drugs, as well.

Wegetarian
08-15-2013, 11:38 PM
Thanks guys. I did read a lot but didn't seem to get any wiser.

Based on the discussion with my doc and assuming my lab results will be fine I'll be doing:


Methotrexate, starting at 5mg and going slowly up to 25mg.
We'd also cut down the cortisone to just 60mg in the mornings, and after about a month we'd try to go down to 40 and then slowly to 35.
Cotrim forte (trimetroprim 160mg, sulfamethoxazol 800mg) I guess most have it as another brand..I was earlier told I might be on antibiotics for the remainder of my life, but we might try to cut them off in two months or so.


In addition I'll take stuff for protecting my stomach, bones and vitamins for the Methotrexate. I will need to go to the lab about every two weeks. I was also suggested to keep my nose moist. I use a can for that daily, and the spray I got from the hospital (2% dexapanthenol) seemed very nice so I bought a similar one from the pharmacy as I'd run out of it.