Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[pberggren1]

I am the only wegeners patient for miles and miles. I am sure of it.

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

[drz]

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

I remember we discussed the numbers a while back in some other thread. Somewhere we had a number of cases diagnosed in Canada and that number along with the current population of Canada yielded a ratio of around 1 in 8000 which seems more credible. My internist in a smaller town has three other Weg patients in her caseload of around 2000 patients and she is not a Weg specialist. On the Webinar they just had it was stated that if all auto immune diseases were added together, AI diseases would easily be a top ten disease. It was also mentioned somewhere that AI diseases seems more frequent further from equator so maybe the ratio might be somewhat lower in warmer climes nearer the equator.

[HopeinTN]

If you are taking the cytoxan in pill form what is the general time frame for the body to be in your system long enough to notice side effects? I've been on it since last Thursday and getting curious. So far, and as previously mentioned, just aches in my legs and lower back. Not sure what that's from but could be one of the meds or just in my head. Thanks!

[Sangye]

It takes about a month for cytoxan to work fully. Sometimes you get a little relief sooner, but it's mostly due to the pred.

[kulharv]

hello HopeinTN,

I was on CTX IV Infusion and had 7 treatments from May to end of Sept. Only main side effect was hair thinning. I like you have thick curly hair so no one really noticed the difference other than myself.

As or the prednisone, like everyone has mentioned, you will notice weight gain, tendency to be hungry a lot more, mood swings. I have now just finished RTX and had knee pains and the dr said it was the prednisone, so this could be something to watch out for.

Drink all the water you can and remember to go pee right away and do not hold it!!!

Bactrim: no side effects

Good luck with everything!

[delorisdoe]

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

nope...none near me...I am the only one. I thought I was the only one in canada until I came here-lol. I like being a little delusional. I actualy do know how many wegs patient my doc has.

[pberggren1]

nope...none near me...I am the only one. I thought I was the only one in canada until I came here-lol. I like being a little delusional. I actualy do know how many wegs patient my doc has.

You are supposed to tell us how many silly.

[dennis2512]

thanks for all this info husband dx in aug on same meds hes not feeling well no support at all in australia i only have this forum frustrating he is 49 my name crissie email add [email protected]

[Al]

thanks for all this info husband dx in aug on same meds hes not feeling well no support at all in australia i only have this forum frustrating he is 49 my name crissie email add [email protected]

Crissie, you will get support here, and not just local--we're all over the world! Check back often....

Al

[HopeinTN]

Sorry with all the questions but I know you all understand and are a huge help. Still feeling ok from the Cytoxan, preds and bactrim aside from leg andlower back aches. As of today (1 week in) my lower left side/back hurts. This is the same side as kidney stones and infections in the past put not quiet as painful...yet. Is this commom with the meds? I have an email to the doc, but trying to fish for info in the meantime. This is not the same side as my funky Weg lung/lobectomy.

Yes, I'm drinking plenty of water.

Thanks!