Do You Every Wonder/Think The Same?

[Christina32]

Hey David, I have wondered this many times. Since diagnosis almost a year ago everything seems to be better and going well. Generally I feel ok. I don't have a wegs specialist so we are just following a protocol for treatment. Surely everyone is different so if I'm feeling good and everything seems ok why can't we speed it up a little and get me off these drugs?! Of course I have not had a flare up so that keeps me cautious.....

[annekat]

Hey David, I have wondered this many times. Since diagnosis almost a year ago everything seems to be better and going well. Generally I feel ok. I don't have a wegs specialist so we are just following a protocol for treatment. Surely everyone is different so if I'm feeling good and everything seems ok why can't we speed it up a little and get me off these drugs?! Of course I have not had a flare up so that keeps me cautious.....

True that you could have a flare-up if you go off the meds or reduce the dosages significantly. Nearly two years after dx, I had been switched from CTX to MTX and the dosage was not enough, so I had a flare. It took a few months to develop, and I was tapering pred at the same time. When the flare became apparent, the dosage of MTX was raised to a more therapeutic level, along with an increase in pred. That reversed the flare, and I've been pretty much OK since, still on the revised dose of MTX and in the process of tapering pred below 10mg./day. But I'm afraid to make any drastic changes for fear of another flare. I think I do better overall in the warmer months, so that might be a better time to try to reduce or eliminate some meds.

[drz]

As I'm taking my meds I think, "What if I don't even need this anymore really. What if I haven't needed it for a while, and I just don't know it? What if I'm taking this medicine that has these (damaging) effects for nothing?"

Have you ever (even once) wondered?
David

I routinely review all my meds with my doctors at my regular visits and ask if there are any I should change. Yesterday my nephrologist indicated I should try reduce my dosage of metropolol to increase my blood pressure. Previously they used to think that lower blood pressure was better for protecting the kidneys but later research indicates the low normal range seems safer. The week before my treating doctor for Wegs thought I might be able to give up the generic Fosomax and my consultant thought I might go back on a baby aspirin again to reduce risk of stroke and heart attacks. usually they tell me I need to stay on same 22 meds but I then feel better since it has been reviewed again to be sure it is still right for me

[Pete]

I routinely review all my meds with my doctors at my regular visits and ask if there are any I should change.

I had a similar experience with my PCP last week. He has been after me to start on a statin due to my LDL cholesterol being below 70. He said this gives me a 7.5% chance of dying from heart disease. My response was that I have a 92.5% chance of dying from something else, and given that I have GPA/Wegs, I'm betting on that. I'm not taking statins.

I've been able to get off BP meds altogether since June 2012. I was on HCTZ, enalapril, and toprol XL (all at lowest available dosages). When I had my major flare in February 2012, my BP was 60/40, so we dropped HCTZ. A couple of months later, my BP was up to 100/60, so we cut out toprol XL. A couple of months after that, my BP was 120/70. I asked to try going without BP meds altogether at this point, as I was feeling well enough to resume exercising. With continuing exercise, my BP has stayed in the acceptable range. Last time I saw my PCP it was 122/70 with no BP meds for the preceding 18 months.

Am planning to have the discussion about reducing mtx with my rheumy when I see her next month. Don't expect I'll ever be drug free, but sure would like to minimize what I do have to take.

[woz]

Thats the $64,000 question, I would like answered myself, I am only on a maintenance dose of azathiaprine, and have been off pred and weg free (hopefully) for the last 8 months. I feel like going drug free all the time, but as they say in the movies, DO YOU FEEL LUCKY PUNK, and I am not usually a lucky person, that's why I don't gamble. I have been unlucky to catch wegs, but extremely lucky to get rid of it so quickly (I hope), considering I had wegs involvement in most places in my body.

Regards Woz.....