Do You Every Wonder/Think The Same?

[TOBEY32]

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

[Dirty Don]

Yes, and like I'll tell you...you think too much. React to the disease, don't contemplate it...you'll lose...best to you.

[annekat]

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 Well, no, I haven't yet, but if you have been wondering that, it is probably a good sign that you are doing quite well! The only way to know for sure would be to go off the meds, which would require a tapering process, at least with the prednisone.

[Alysia]

Hi David :wub:
of course I wonder. and what a coincidence: I decided to ask my doc to stop the MTX. few hours ago I sent him an e-mail asking that and he agreed. so no more mtx :thumbup:
now, lets see if I can stand it. I am already also on rtx.
and then seperating from pred is impossible for me. but not for everyone.
what meds are you taking ?

[Wegetarian]

Oh yeah. That's one of the questions I have for my doc for our next meeting. Well its more about the extra stuff that I take because of the pred, like bone meds and calcium. The level of those have been the same even though I'm on 1/10th of the pred dose I was last Aug. I did already talk about taking less of the stomach pills, and haven't noticed any difference now that I take half of what I used to.

[NikkiNicole]

Oh I think it every time I drag myself into the bathroom to give myself a dumb injection. I feel like my brain is fuzzy for a couple days and I wish with everything I am that it was already August 2015 and I could stop all my medication. That's assuming I can when august 2015 rolls around. *crossing fingers*

I've been feeling good these past couple days so I am hopeful that things are FINALLY working now that the blasted appendix is out of the body as well.

[Debbie C]

I think of it everytime I pop a pred, I am going to start tapering off them now that nicer weather is coming and hopefully less sick people around.What all are you taking ?

And yea for you Alysia for getting of the mtx...I say the less the better...Good luck

[RudiK]

I did think about it, and in Oct 2013 convinced my docs to taper me off the preds and immuran. I took the last pills in late Dec 2013. And guess what? My next scheduled blood test on Jan 23 2014 showed I had relapsed (high C-ANCA, high blood sedimentation rate and high Serine Protease 3 AB), lucky for me the urine analysis was still clean. So, I'm back on immuran and preds and hopefully get back into remission before the WG dog attacks any of my organs.

[vdub]

I adjust my meds almost daily, but I'm in a different situation than most of you. I just mentioned that I stopped the gabapentin, but that was only because I had other pain pills in my bag of tricks and gaba is sort of a nasty pill.

I'm not on pred like most of you, but I do take cortef, which the docs think is keeping things in-check. But I actually take the cortef to replace my adrenal hormone (cortisol). I never go w/o cortef, but if I think I'm getting a cold, I'll triple it for few days.

Short answer is, yes, but with doc's blessings.

[mishb]

Hey David,

I can't say I have really thought about it - but I do like your way of thinking :thumbsup:

I also like that you come of with cool questions, that then gets me thinking :tongue1:



Alysia, I hope going off MTX works for you and that the RTX keeps you stable without the other

[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.....