My Meds.. someone help! lol

[Keli]

I think I am at a point where I am just lost and confused. I am wondering if my med regemin looks normal for someone with an active case of WG. I just don't know what to ask or where it seems to be going. I have had thoughts to search for a new rhuemy or at least start asking more questions. I believe I am afraid of messing up my treatment becaise I am unsure of even my condition. My current meds are prednisone 80mg, adalat 60mg, paxil 30mg, cellebrez 100mg, gabapentin 90mg, hydrochlorothiazide 25mg, Septra, prenatal vitamin, cal/vitd 2x day, omeprazole 20mg, RTX 4 over 4 weeks infusion and pred forte eye drops every hour for my scleritis.. I have been told to stay out of direct sunlight, cut my salt intake and now my sugar intake. I have gained 100 lbs since september. I am now having to use a wheelchair to get around since my body can not handle the extreme weight gain and the shortness of breath. I am sure it is more frustration for me. I went from independent doing everything myself to not being able to tie my shoes.

[renidrag]

My regimen was 80 pred, 150 oral cytoxan, Omaprazol I think 40 and Bactrim 40 and it worked for me. I only had lung involvement. Are you seeing a wg specialist? Many will follow and ask the same question so I am preparing you. Specialist? Story? How long? Location? Symptoms? There are a lot of knowledgeable and loving people here who will help.
Dale

[Sangye]

Keli, where are you located? Are you see a Wegs specialist? You definitely need to be involved in your own care and become educated about Wegs and each of your drugs. A good doctor will help you do that.

--The 80mg of pred is an extremely high dose. You should not be on that for longer than a couple weeks. How long have you been on such a dose?

-- Paxil causes weight gain. It might be a good thing to see if you can switch to a different anti-depressant.

-- Cellebrex is a risky drug. It greatly increases the chance of stroke or heart attack and has other risks that make it especially bad for a Weggie. It shouldn't be used unless there are no other alternatives.

-- The weight gain is a major concern. I understand how difficult it is to resist eating while on pred, and I've gained a lot of weight myself. However, 100lbs in less than a year is extremely dangerous. You will have to use sheer will to control your intake. I suggest you either use an online tool to count calories and monitor nutrients (eg salt) or consult with a nutritionist as to how to do it.

[Jack]

Your drug regimen does not look that unusual although there is quite a lot of it and it would be nice if you could cut it down a bit as time goes by.
What Wegener's symptoms are you still suffering from? I would have thought that the combination and doses you are taking should be effective and if they are not working for you it may be necessary to try a different combination. It would be good if you could get the Pred dose down a bit! It may be causing more harm than good.

[Keli]

I started with lung, eye, sinus and joint involvment. Now I still have scleritis in my eyes and my sinuses still give me a little trouble but nothing that isn't managable. I noticed a swollen ankle on the 4th of July last year and byu august 15th I was in the hospital receiving steroids and blood infusions. My inflamatory markers were over 300. We started the meds I am on now and cytoxan. With the ctx I did 9 infusions and everything seemto go away except the sceleritis. Now my eyes seem to be bulging or it looks like a bubble in my eye. I have what they call PUK. My vision has gone from 20/20 in both eyes to 20/2100 in the left eye and 20/50 in the right. I am currently located in Stafford, VA and do all of my therapy at Walter Reed Medical Center in Washington DC. I did see the list of doctors that Sangye posted and will be calling them this week.

[pberggren1]

Sangye sees Dr. Phil Seo at JHU and he is very good.

[Sangye]

Keli, I'm glad you're gonna call JHU. You won't believe what great care you'll get there.

[elephant]

Keli, Hope you call JHU. They should be tapering the prednisone by now. They usually start out with 60 mg of pred and start to taper down 10 mg every 2 weeks till you get t o 20 mg. Then it a slower taper...

[norcalian]

I'm doing 80 mg/day of Prednisone...have been for three weeks (since I left the hospital)..but I'm also a big guy (6'2 - 230lbs...and gaining). I'll have to be more pointed and specific when I ask my doc what his plans are for tapering me. I'm already starting to get the round-face and I would love to back off this stuff ASAP.

[pberggren1]

You should probably start to taper in another week norcalian. My doc says one month on the hish dose and then start tapering something like 5mg per week.