Greatful to be alive my story.(.as it is now)

[ThirstyRoots]

Hi! I have actually had Wegeners since 1999, but after being treated (w/ cyclo and prednisone), my Wegeners has remained relatively quiet on Methotrexate and 10mg Prednisone for about 11 years!

Problems started again for me last August when an x-ray detected a cativating nodule. For a variety of reasons it took awhile to decide what to do, which was to attept Imuran instead of dealing more aggressively with the nodule. It turned out I couldn't tolerate Imuran, and the nodule doubled in size! At that point we tried IV Cyclo (I had taken pills when first sick).BUT... After each treatment of cyclo, I would develop an infection! I first developed pneumonia, so we had to stop the cyclo. We resumed, only to develop strep in the now fully cavitated mass; another hospital stay and delay on the cyclo.

My wegener's got fully out of control about 3 weeks ago, with massive bleeding from my lungs that landed me in the ICU. They sedated, paralyzed, ventilated and blasted me with steriods and fortunately were able to stop the bleeding! I was treated with Plasma exchange and Rituxan while in the ICU ; the combination seems, so far at least, to finally have stoped this out of control flare up(as far as we can tell now)! I am still in the hospital, waiting for my 4th treatment of 4 with Rituxan, and quite weak after a 2 week stay in the ICU, but extremely grateful to be alive, and much sobered as to the true, nasty nature of this disease. I have been inclined to be conservative in my choice of treatment for Wegener's so far (it was my choice to attempt Imuran before returning to the cyclo). Rituxan had also been recommended;oh how I wish I had been more open to it before my lungs bled out!

It will still be awhile before things come down to earth, but I despite feeling weak, I feel quite good. I am convinced now that Rituxan was a major factor in stopping this flare. We are looking at Ritux as a maintance therapy. As I live in Toronto, and Canada has not yet received drug approval for this type of use, there is some red tape to work through, but I am remaining confidant that we can work through this some how.

Would love to hear from others, esp who have had experience with Ritux.

Thanks!

[pberggren1]

Welcome to our Family Thirtsy1

I am also waiting for the Sask drug plan to approve funding for rtx. If you are in Toronto do you see Dr. Simon Carrette at Mount Sinai or someone else there at the Vasculitis Clinic?

Do not beat yourself up too much about choosing a less toxic way to treat the Wegs. I think most of us have been down that road. Thankfully you are alive and the rtx is working along with the nasty pred.

I am inclined to think that the cavitating nodules were more of an infection than Wegs. Typically with Wegs the nodules are not cavitating but when an infection is involved as well they become cavitating. One can have a lung infection without Wegs being active and have a lung x-ray show cavitating nodules.

Again, welcome to the Forum.

[Chris G]

Welcome Thirsty. I'm glad you're doing better. Methotrexate seems to have failed for me, and I'm also unable to tolerate imuran. I've just begun rtx myself, so you actually have more experience with it than I do. But many people here have plenty of experience with it, and I know they'll pop in to offer more advice. I hope you regain your strength quickly and get the heck out of that hospital!!

[Sangye]

Hi ThirstyRoots, welcome to the group. I'm glad they've gotten you stabilized and on a drug that seems to be working. I'm amazed that you were in remission for 11 years. During that time did your docs ever consider lowering the pred and/or stopping the mtx? I don't think they did much that back then, but it's becoming more standard to at least attempt going off the drugs.

[ThirstyRoots]

Thanks for the welcome, Phil!

I have seen Dr. Carette several times, although work with another Dr. (who consults with Dr. Carrette whenever things get weird. It has always been good to see Dr. Carette, but when I last saw him (last fall), they seemed to think itI was unlikely to get approval for Ritux...well, I am grateful it came through for now!!!

Welcome to our Family Thirtsy1

I am also waiting for the Sask drug plan to approve funding for rtx. If you are in Toronto do you see Dr. Simon Carrette at Mount Sinai or someone else there at the Vasculitis Clinic?

Do not beat yourself up too much about choosing a less toxic way to treat the Wegs. I think most of us have been down that road. Thankfully you are alive and the rtx is working along with the nasty pred.

I am inclined to think that the cavitating nodules were more of an infection than Wegs. Typically with Wegs the nodules are not cavitating but when an infection is involved as well they become cavitating. One can have a lung infection without Wegs being active and have a lung x-ray show cavitating nodules.

Again, welcome to the Forum.

[ThirstyRoots]

Hi Sangye

Yes, 11 years of being relatively quiet has been great! I have learned though, that I will need to be far more vigilant and aggressive in treating symptoms in the future!

We have adjusted the Methotrexate dose a bit over the years, and the maintence Prednisone was started about 3 years ago.

[pberggren1]

Have you been able to work over the years Thirsty?

[elephant]

So glad the RTX is working for you!

[ThirstyRoots]

I have been able to work most of the years. These past 5 months have been very difficult as I have been in and out of the hospital, have had lots of fevers and been very tired; but this has only been the case recently. I have not been seriously disabled by the disease so far!