Well I'm on a different roller coaster now.
I went to Dr. Yan (rheumy) on the 20th and was told that we are going to stop the cyclophospamide - weeeeeeeeeeeeeeeeeeeeeee
I have to stop the pred wean though for at least a month and a half
aaaaaaaaaaaaaaaaaaaaaaaaaaaaa
I'm going to be put on a less toxic chemo drug
weeeeeeeeeeeeeeeeeeeeeeeee
I have to inject it once a week instead of just popping pills
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He told me that my ANCA was quite high (didn't get an actual number) when I got diagnosed, and now it's in the negatives (again no number)
weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Have been feeling off for the last couple of weeks (crazy stabbing headaches, ear aches, phlegmy like the early days, stomach pain, eye pain, chest pain and sore teeth)
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
For sure it's not because of coming off cyclophosphamide as I was feeling this way before I stopped taking it
weeeeeeeeeeeeeeeeeeeeeeeeee
Could be the flu shot, could be a cold, could be the pred wean
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A roller coaster of a much different kind. I like the one at West Ed better... you are more certain of the outcome than the one I'm currently riding on. But I guess like a roller coaster, it's always more scary when you are on it than it is when you get off and look back at the experience. I guess I just have to keep that in mind an know that I'll look back on this one day and hopefully giggle.
Hi there Marta, your not alone on the rollercoaster! I had the same experience with stabbing headaches, same old ear aches and extreme fatigue shortly after coming off cyclo- fosphamide. I wasn't happy (after ruling out other causes) when I finally realized it was related to my pred wean. I had to crawl back to the previous level - felt ok with in 2 days...
ReplyDeleteI hate to be such an pred addict! Passing magic 15 is not easy! Currently I'm going for a new try on the wean-o-coaster, so far so good.
PS. The metoject weekly injections are a breeze compared to cyclo.
Never give up! Your Weggiefriend Anna
Hey Anna,
ReplyDeleteAfter reading your comment, I got brave enough and made a decision. I went up to 20mg to see if it is the pred, and literally within 2 hours of popping the pills my headache was almost gone, my sinuses were dryed up, and my ears stopped hurting. I just went to a new doc today - she's back in town (within walking distance from my house - my other two I have to drive to out of town) and she said stay on 20 for a week, and then instead of going down to 12.5 go to 15mg while we're doing the switchover of the immunosurpressants. I was thinking the same thing last night in bed that I'll stay on 15 while we're testing the waters, as most of the symptoms started after I went down to 12.5.
Quite the little juggling act this Wegener's management business, hey?
Thanks for the support and your great words of wisdom that always seem to come at the right time.