Update on Sangye

[Sangye]

(General stuff I learned at today's appointment with Dr Seo: http://www.wegeners-granulomatosis.c...html#post44925 )

Regarding my own case...
1) I gotta do the 4-infusion protocol of rtx from now on. The 2 infusions I did in February clearly didn't work. It's probably because I'm so ginormous (see above thread).

2) Since rtx is my only option, ever since I started it the plan was to space out treatments as far as possible to minimize exposure. When the Wegs started waking up I had to hold on as long as I could without waiting too long. It was nightmarish. As we all know it can be very difficult to tell what's going on. I basically was losing 5 months before every round to feeling increasingly awful. I'd go into the next rtx treatment super weak, and the treatments would weaken me even more.

At my last visit we had decided to do rtx every 6 months instead of waiting for the Wegs to wake up. This was going to spare me a lot of suffering and eliminate the constant anxiety of "Is this Wegs?" Apparently that decision was based on doing the 2-infusions. Now that I have to do 4 infusions each time, he wants me to try to make it a year. He really wants to limit my exposure to rtx. (I've already had 4 rounds, which he says is a lot.) Also, he said the more rtx you get the better it works. So the theory is that those 4 rounds behind me will give me more time between treatments. He believes I'll be able to make it a year without the crash and burn. I expressed my doubts.

Having lived through this a number of times I am really dreading the months of crash and burn before we agree it's time to re-treat. I'm constantly losing any ground I've made. The last time I was able to exercise in a pool was 8 months ago (!!!) when the Wegs started waking up. I think I'm gonna let myself have a few good cries over this.

3) I'm gonna try switching to hydrocortisone from pred.
The endocrinologist I saw recently will handle this. This is to try to get my adrenals to wake up so I can go off it altogether. Dr Seo thinks it probably won't work and I'll have to try it again next year. But he feels it's worth a try.

Okay, that's basically it.

[norcalian]

Thank you so much for the information! I'm really sorry for all the crap you're going through with the RTX treatments. I really hope that this new treatment approach somehow works for you.

[vdub]

Not good news at all.... How long will you feel crappy after a 4-set infusion? I guess what I'm asking is how much of the year will you actually feel new-normal?

Hydorcortisone is not too bad. You gain weight of course. And you heat up -- my new most favorite temp outside is about 55F and 25% humidity. Anything above that and I don't feel comfortable. One plus is that the hydro makes you sweat a lot, so excessive salt will be in your new diet -- food tastes great.

Keep us posted! I'm really sorry you have to go thru all this....

[me2]

My doc has mentioned that he has several people he is treating every six months. I'm now one of them. I will get a single dose instead of two or four. I started with four way back when because I requested it. The were already treating people with two but I wanted four. After reading what you have said about the cummulative nature of rtx it sounds like it might have been a good idea to start with four. I didn't really get much better at that time.
It wasn't as dramatic as the cytoxan. I can't take any more cytoxan as per Dr Langfords recent advice.
She was the one who also encouraged me that rtx could work better for me this time than it did in the past. News to me.
Good news... apparently somethinng is working better. I am on a path of steady improvement that I have not seen for many years.
There are still ups and downs but the general trend is towards better. I attribute this to increased effectiveness of rtx this time round.
My other things are not radically dfiferent than from what I have done before.
It would take me a book to tell all that I have been through these past twelve years. Hospitals, ER's, MRI, brain damage, lungs , joints, mouth, sinus, etc but I want to throw out a word of encouragement to others taking the LONG path. It CAN get better. I was starting to have my doubts
(I guess my natural optimism has a half life of about twelve years)
It also can change for the better with the same capricious captain that made it get worse.
Even now that I am an old guy I am astounded at the bodies ability to heal and recover. Of course its not giving me the body of a 20 year old back so I exect to retain a few complications. I'm just glad to not be fighting to stay alive every minute of every day.
Hang in there my friends.

[Psyborg]

Sorry for your difficulties Sangye I hope that the Hydrocortisone treatment works out for you.

[Sangye]

Not good news at all.... How long will you feel crappy after a 4-set infusion? I guess what I'm asking is how much of the year will you actually feel new-normal?

Hydorcortisone is not too bad. You gain weight of course. And you heat up -- my new most favorite temp outside is about 55F and 25% humidity. Anything above that and I don't feel comfortable. One plus is that the hydro makes you sweat a lot, so excessive salt will be in your new diet -- food tastes great.

Keep us posted! I'm really sorry you have to go thru all this....

Thanks vdub. Dr Seo felt certain that I'll get stronger in the year before the next rtx and that I won't crash and burn. Sounds great, but like I said it's never worked that way before. A 4-set infusion makes me feel awful for 6-8 weeks (counting from the 1st infusion). Once that's worn off, I've lost ground due to inactivity for 6-8 weeks. So under the best case scenario (ie, I make it to 1 year without Wegs waking up and without any other complications), I'm still losing 2 months a year and taking another 2 months to catch up physically.

Thanks for the info about hydrocortisone. I already have all those side effects from pred! The endocrinologist said hydrocortisone should be somewhat easier to tolerate. There's a lot of trial and error with getting the dose right, and I have to say I'm apprehensive about doing it. The devil you know vs the devil you don't. I just hope we get it leveled out long before the Wegs starts waking up. I wouldn't be able to tell what's going on at all. Maybe I would.

Man, I'm a bucket of worry today. I gotta get a handle on that.

[Brooke]

Sangye, I hope that last Ritxuan round you had will make you much stronger and if/when you need it again, it wont' be so bad. Try to stay positive and listen to what Dr. Seo said.

[Sangye]

That's the thing-- it isn't just a case of staying positive. It's that I've been down the road so many times before. After my 2nd round in March, 2010 he was sure I'd make it a year. I didn't. I made it 7 months and then went through hell for 4 months trying to make it to a year. Then he was sure the 2 infusions in February would work just as well as 4. They didn't, and I went through hell some more.

His info is based on hundreds of Weggies, so it's not his error. But I'm the one getting burned.

[NicShaf]

Sangye,
I hope this new plan really works for you this time

[Jules]

Hang in there Sangye! Someone recently sent me a card which said "tough times don't last, tough people do!". And if it's positive thinking is a step to far for you at the moment . . . take comfort from the fact that I am sure you have a whole website of weggies thinking/wishing positive thoughts for you.