Rituxin - and progress?

[debra]

Birdie,hello there! Birdie, what was the amputating half you're jaw going to do? I never heard of this? Almost like preventing it from spreading? If you would please clarify this for me I'd appreciate it, especially since I have mouth involvement. Weird you mensioned tissue in you're mouth,because even my tongue is different, almost feels like there's no protective tissue there anymore? Like its worn down or something? Real strange... Also, here's another for ya, wipeing my mouth, like with a white napkin,pale pink will be on the napkin,like color wearing off!!! No lipstick, no bleeding! I can't even tell this to a doctor! She will bring in a straight jacket, inplace of the stethoscope! What the hell is this doing? Ha ha... Oh boy, it never ends does it....... Deb.

[Middlesista]

Wow Birdie - now that was a lot to deal with for sure! The prednisone at 80mg - glad it helped your symptoms but geez those infections. X I am at 1/2 that dose ( so far) and it has had such a profound impact on everything, I truly wish none of us had to deal with this although I well understand our reality.. Gotta stay strong.

[Birdie]

what was the amputating half you're jaw going to do? I never heard of this? Almost like preventing it from spreading? If you would please clarify this for me I'd appreciate it, especially since I have mouth involvement.

There was no tissue in my mouth that wasn't... I think I said I can't describe it... There was nothing left to cover the bone, nothing connecting anything together, it was just granuloma, puss red blue green black white soft inflamed swollen lookin like a lab experiement in beaker that went horribly sour... yukkkkkeeeeeee! And that was nowhere near my biggest issue. Yep, talk about rapid onset? Never been to a doctor before, never been sick, didn't know what a cold was like except hearing others whine about them... took about four months of slowly increasing issues, then in a few weeks everything went really really really wrong... really really really fast, and ramping up really really really fast... getting worser and worser at a faster and faster rate of worser and worser... At the time I thought it was an attack of the killer Putins! So there! That'll learn ya to ask me for specifics Deb. Don't know what else to say.

Five hours after 80 mg of pred and I was gently eating a grilled ham & cheese with fries, still in the emergency room. It only took about a week for my teeth to be solid again, not loose. A few months later and the tissue in my mouth had been replaced, to mostly normal, with reduced gums around my teeth. Pretty good indicator that treatment was working, dontchya think?

[debra]

Birdie,thank you,I didn't mean to put you on the spot... Pretty scary stuff, and real bizarre... Everyday, pink comes off my lips? Why? How on earth is this even possible? I won't dare tell a doctor this, or how it feels like my tongue is wearing off! I say this here because u all know this is a crazy weird, nothing off limits, sucky factor of extreme magnitude sickness..... Why is everyone against Putin? Deb.

[Middlesista]

Question about appetite - on prednisone just reduced to 35mg. Since I have been sick -no appetite. Is this par for the course for many even when on Prednisone?. Tired a lot but not sleeping due to Prednisone. Plus really de-conditioned due to needle biopsy lung "accident" which threw a huge wrench in recovery. I finished my last of 4 Rituxin treatments 2 weeks ago and can't say I feel any different and the good news thus far is that I still have regained my vision which was reallythe only symptom I had until they stumbled on those pulmonary nodules . Do folks get an appetite back when things start turning around for them in a good way and does the fatigue get better?

Thanks again everyone - I find coming to the support group provides me not only with information but also emotional support.

[Birdie]

Question about appetite

also emotional support.

Prednisone makes you extremely hungry. I thought it was absolutely 100% true for everyone. Other health issues, maybe medications, must be overwhelming the pred. Makes me wonder if the pred is doing it's job of pumping up your metabolism. You should be eating all the time... worried about weight gain...

For emotional support, go back to Debs party (looney as it is).

[debra]

My sista in the middle, come over, just as Birdie said, we are slightly nuts over there... Only slight... Sista, if you have lack of an appetite on pred, then its maybe an infection still going on? Because of the whole lung issue? Just a guess, as I know pred increases appetite. A lot.... Best of luck, sista in the middle.... Deb.

[kaysee]

Middlesista - I have had two rounds of RTX. The first in July 2014 and again in October 2014. According to my doctor a second round usually follows six months after the first. My second round was done sooner because I have kidney involvement and my creatinine levels were not coming down. My kidney doctor was extremely concerned and felt it necessary to do another round of RTX as soon as possible. The creatinine level did eventually come down and have been stable ever since. Still, I have only about 35% kidney functions thanks to WG. I was on prednisone during the RTX treatments but started to taper soon after. I have been off pred since last February and I have had no WG flares. I'm feeling great with the exception of some hip pain due to fluid (a result of the inflammation) in the joint and osteoarthritis..

[Middlesista]

Due to concerns with blood sugars and the prednisone I am watching what I eat so am losing weight but not to the same amt I had been prior to diagnosis. I just recall that when I lost my hearing but was not diagnosed two years ago I lost like 20 lbs and thought it was a great thing - not knowing what was probably going on and then appetite and weight came back. I was treated with prednisone for the - what they called sensioneural hearing loss. I have to wonder if the GPA went into hiding after that time or was quietly lurking waiting for another opportunity to strike again.

Waiting for the Rituxin to kick in full force and put this into remission........

As my friend said to me - this is all so surreal.

[Birdie]

I was treated with prednisone for the - what they called sensioneural hearing loss. I have to wonder if the GPA went into hiding after that time or was quietly lurking waiting for another opportunity to strike again.

Pred boosts metabolism to the point that your body deals with the Wegener's issues. Metabolism so high it can undo the damage as fast as it's done. It takes a lot of prednisone. I met a Wegener's patient in the hospital, later heard that she was moved to ICU and put on 1,000 mg of pred. as a desperate attempt. As expected it put her in a coma, but it didn't work which was also expected.