Sangye's Status

[Jack]

And yet I have the opposite problem - Potassium too high. It scares all the doctors, but hasn't killed me yet.

(Yes, I do know what it can do to you.)

[Sangye]

I saw Dr Seo today for a routine follow-up. I'm down to 5mg pred, which is almost where I began when the vertigo/hearing loss started in July. I still don't have any Wegs signs/symptoms and he feels it's still under control. He wants to see the results of today's blood work, though, as it shows how active the rtx is (by measuring the CD19 type of B cell-- the ones destroyed by rtx). We'll redo rtx when they start to recover--hopefully not until early 2011.

About Ritux:
While I am the biggest fan of rtx, he emphasized that there isn't data on its safety for Wegs beyond 5 years. He said he's still most comfortable with ctx for patients, since it's been around for 40 years and the risks are well-known. If it hadn't been so toxic to me, he'd use ctx for me instead. He cautioned me about being a cheerleader for rtx because of the uncertainty. So there you have it.

I asked him why some people are put on imuran or mtx right after rtx, but I'm not. He said it's reasonable to put people on those meds, but I have a history of not tolerating much so we're gambling that I don't need anything in-between rtx infusions.

Other stuff:
Lower extremity swelling has become a HUGE issue. The swelling is unbelievable and doesn't really respond to diuretics. After saying he was out of ideas about the cause, Dr Seo said obstructive sleep apnea could cause leg swelling. I've been trying to get a sleep study done for over a year (!!) but haven't been able to get medically stable enough to do it. I'm going to get it scheduled asap. Wouldn't it be great if that was the cause of the swelling and overwhelming fatigue/ weakness?

Meanwhile, the only specialists I haven't seen about the swelling are pulmy, cardio and neph. He's willing to send me to whichever I choose, but I should decide soon before they get booked for the holidays. I'm wavering between cardio and neph. I don't think a pulmy would have anything to contribute.

Finally (I think), I asked about testing my adrenal function someday. Last year the JHU endocrinologist said I had to be off pred for 3 days to do the blood test (AM Cortisol). Dr Seo said now would be a good time to do it, before the rtx starts to wear off and the Wegs can kick in again. He's worried that it could anyway, but feels that restarting the pred again would keep it under control. I'm going to get a little more stable at 5mg or lower before I do it. He said what we both know-- that I will feel like absolute death for those 3 days-- but there's no other way to get the info.

[me2]

Sangye,
Good to hear from you here. Thank you so much for sharing your recent knowlege about cytoxan and rituxan. I either don't have great docs like you or they don't talk to me enough. Maybe I have both. Either way , the info you share is VERY much appreciated. I am currently doing cytoxan infusions every two weeks. I had one just two days ago. Man, would I like a vaction from that. Still , it could be worse. I have been mostly up and around. Thats better than how Wegener's treats me.
I'm sorry you have this mysterious swelling. It must be so frustrating and here it gets put on the back burner as you deal with other things. I have a crazy thought. What about a good massage therapist. I don't know if it would help but at the very least it could feel good. I'm sure you know that a gifted and knowlegable massage therapist can some times help resolve truely serious medical problems. Its just a wild thought but you deserve some kind of medical treatment that feels good.
I know what the pred situation you are in feels like. I'm going to bet almost everyone here knows the special pleasure of pred withdrawl. I'm sending mental prednisone to help tide you over. You don't need a prescription and I don't need to know if you have insurance to cover it .

[pberggren1]

Thanks for the update Sangye.

My doc said basically the same thing about the rtx vs. ctx issue.

I'm sorry to hear you will feel like death for 3 or more days to do that test for your adrenals.

I would also take all 3 docs, neph, pulmo, and cardio, if it is no extra cost to you. Maybe I am being too cautious or anal or like a mother hen.

I hope the cause of your swelling can be found soon.

[DEE]

Sangye glad you had a productive visit ,i like my wg consult for the same reason he never rushes and is always willing to explian
i took a friend with me last time and she was very impressed with him .
hope they get to the problem of the swelliing soon
take care of you DEE x

[Col 23]

Hi Sangye and all
Havent been on for a while very up and down. Great to hear that your down to 5mg Sangye but can empathise with the other. Im down to 10mg and feel very weak after a week on 10. My nose has some bleeding and burning sensation, knees swollen and painful, feet tingling and numbing, ankles swelling, occassional ear pain, lumps in my legs, some minor eye pain and major fatigue. I know the swelling and pain in knees is due to RA and inflamation and although I wasnt able to get an answer from the Rheumy or the GP about the lumps, I read on the net somewhere that is related to the RA. I think Im starting to flare now Im down to 10mg but I was told to hang in there by Rheumy and was given Mobic and pain killers to get me through. If it gets much worse I will be going back to doc. I feel like Im back to the beginning again but not as bad so hopefully I will get through. I have been reducing pred my 1mg at a time for 3 weeks at a time , that 1mg sure does make a difference. I also had major swelling, I looked as if I was going to give birth. Doc did xrays an I was impacted so had to take something for constipation, still swollen at times. Probably too much info but hope it might help someone.
cheers Col 23
Wishing all well.

[elephant]

Sangye, thanks for sharing and I agree with Phil..need to see all three specialist. I have all three, esp you had a billion lung clots and bleeding....it's good to rule that out re: edema.

Hi Col, I have a feeling you are flaring with WG. When I was first diagnosed they thought I had arthritis...but it was truly WG all along. All those symptoms that your having sound to me like you need to talk with your WG specialist asap. Just looking out for you. Thanks for keeping us updated.

[Sangye]

Dr Seo also mentioned yesterday that another drug that had the potential to be as good as ctx or rtx is not going to be used. (I don't remember if the study was stopped or if it was completed and has been shown to be ineffective or harmful) I didn't get the name of it-- a long one! At any rate, he said nothing else is coming down the pike any time soon-- rtx is it. There are other drugs being studied for milder Wegs, though-- along the lines of imuran, mtx, cellcept, etc....

[Sangye]

I'm really sick today. The woman who drew my blood yesterday had an obvious cold. She's not a very polite person on a good day. She was open-mouthed coughing all over me! You know how close they have to stand to draw blood, and taking my blood takes a long time. I tried not to breathe much, but it went on for awhile. So surprise-- in the middle of the night I got a sore throat that has now gone crazy. My whole face is swollen. My eyes are almost swollen shut. I feel unbelievably weak. I'm going to call the office manager there today and raise a little hell. It's the phlebotomist in the Vasculitis Center, so all the patients are immune-compromised. The lab is tiny-- about 7 ft x 7 ft, meaning any germs accumulate in there pretty fast. There's only one phlebotomist there at once (only one could fit), so it's not like I had a choice. I am just furious about this. Who needs Typhoid Mary in a blood lab?

I probably won't be on much today. Thanks for the comments above-- I'll have to get back to them later.

[MCC]

ugh how unprofessional of her to work with a cold like that! Poor you Sangye x