Hello, I am Magnolia. I was diagosed with partial /weg in 2002.

[MAGNOLIA]

Nice to meet you all !!I hope I can contribute with my experience of this rolle coaster ride....and learn from your stories.
After my initial flare and 6 months of pred. I was o.k. and remained so until 2007. Then I had kidney involvement, and ever
since have taken every immunosuppressant plus pred.which you are all familiar with. this year, since Sept/14 to last month,
was given by a new (wonderful) rheunatologist,Rituxan.My kidneys improved initially, now they are not so hot
Anyone have experience with Rituxan? I am very active and this disease really curbs your life.Its hard to find a partner,dont you think?
Hope to hear from you soon,

Best of health and resilience,

Magnolia



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[vdub]

I no nothing about rtx, but many people on the forum do, so I'm sure someone will be contacting you. I just wanted to welcome you to the forum. We're a pretty nice group with years and years of personal experience. There's no doctors on the forum, but we can at least point you in the right direction and give you ideas about what questions to ask your doctor. We have members from throughout the world, so someone is on the forum most all the time. Welcome!

[annekat]

Welcome, Magnolia! Where are you from? This forum has saved my sanity and possibly my life. I also haven't taken RTX but many on here have. It doesn't seem to work equally well for everyone, but that could be said for the other meds, too. For me, the old standard Cytoxan worked well and now methotrexate is keeping things on an even keel. Some docs are using RTX in combination with these or other immunosuppressants. I'll leave up to those who have taken it, though. Yes, Wegs can change our social life. More of a problem for younger people, mainly, but at 62, I still have hope of finding a partner. And one good thing Wegs has done for me is to bring me new friends from all over the world. I hope you get some answers, and I look forward to hearing more from you!

[mishb]

Welcome to the forum Magnolia.
Its great to have another person here who has a great number of years of experience with this, oh so wonderful disease :unsure:

I also have not had RTX so can't help you there.
I'm glad to hear that your kidneys are improving with the treatment.

[Pete]

Hello Magnolia!

Welcome to the Forum. I had two infusions of rituximab about 18 months ago. My rheumatologist prescribed them to knock down kidney involvement that was just starting. This was in addition to 20 mg/week of methotrexate and 60 mg/day of prednisone. The infusions took about six weeks for full effect. Since then, I have tapered down to 3 mg/day of prednisone and 15 mg/week of methotrexate. I have no sign of active disease now.

Do you have a doctor who is experienced treating wegs?

Good luck and better health!!

[LisaMac]

Welcome Magnolia!

I am currently in the middle of 4 weekly Rtx treatments myself. I've tried every immunosuppresent drug out there, I believe, and it works best for me. Back 8/9 years ago when I was diagnosed we only had Cytoxan so this is a Godsend for me. Only one time did it not completely put me into remission and that's only because the flare had gone on for so long. A few months on oral Cytoxan seemed to do the trick that time and now we be sure to catch flares early.

Sure hope you find something that helps soon. And yes, life is different with Wegener's. It's still a wonderful life though. Enjoy the good moments and ride out the rest.

LisaMac

[MAGNOLIA]

Hi Lisa Mae: I think I wrote todays story on the wrong link !Sorry. Thanks for responding. I went to my rheumy today and she aid my P anca tithers wera much lower,due to Rituxan
Gave me 10 mg pred to improve the kidneys. I am going on dialysis, but hopefully not a life sentence.....please God. Please pray for me and I will do he same...I am interested in stem cells for our disease.
Does anyone have a clue?

[annekat]

I hope you are at the stage where the dialysis can turn things around and reverse the kidney issues, rather than having to be on it long term. I don't know much about it but should find out in case it ever happens to me. I know that people on here, like Pete, have started to get kidney issues and were able to reverse it with meds. If you need a little dialysis to help things along, that could be OK. Best of luck.