Another Newbie Question

[Psyborg]

Hey all...I have a question. I've been on Prednisone since the middle of June and with the initial levels of Pred I was feeling nothing of my symptoms for the most part. With my specialist appointment last week I'm down to 30mg a day, which is still a pretty substantial dose as far as I can tell. But I've been feeling the effects of Wegs a lot more since I went from 35 to 30 mg, but I also started CTX the same day as well. I've honestly felt the worst I've felt since June the last few days....dizziness, knee and arm pain and some swelling, fatique, etc. And now my cough has decided to turn it up a notch again (feels like constant phlegm in the trachea aggravating it).

Is this just a fact of life of getting the Pred down? Or does the CTX lower the effectiveness of the Pred? I could call the doctor about it but figured I don't know if I'm just experiencing normal stuff here.

[Sangye]

I think the problem may be that they didn't start ctx before dropping the pred at all. The usual protocol: get high dose pred in for a few days to start controlling inflammation, and then start the main engine-- ctx or rtx-- to really get the Wegs under control. Then start to taper the pred.

The ctx doesn't lower the effectiveness of the pred but it certainly can make you feel lousy. It made me feel like death both times I was on it. I never understood how others would say they were getting stronger once they started treatment!

[Psyborg]

I did call the doctor, though I'm getting someone else in the department to call me back because she's on vacation. I just got worried because this feels like the run up to the last time I really felt bad. I'd really screwed up my Pred as well over time as at some point I misunderstood something and started taking it spread out over 3 times in the day, which the doctor apparently never ordered. But when the pain starts to come back after being gone a while and then the fatigue and the cough I have to admit that worried me. That and it's a bit worse each subsequent day though varying in intensity and migrating around the body.

[Sangye]

Yes, those are all symptoms that raise a red flag. I'm glad you called your doc.

At 30-35 mg pred, I don't think it would make a difference to split it into 3 doses. It's still a very high daily dose.

[jola57]

Psyborg, I too can't think of why they would wait so long before giving you ctx unless your doc eronously thought that pred alone will do the job. Is your doc a wegs specialist? I remember feeling achey forquite a while when I was misdiagnosed and given low dose pred only, but after being given ctx and high dose pred I was feeling much better in couple of weeks. It has been only a week since your ctx started so it may be that you just need a bit more time for both meds to do their miracle work. Unless the substitute doc knows your history well, he/she might not be able to fully assess you. Or you may be lucky and he/she has better knowledge of wegs. Good luck

[jola57]

As far as I know the studies showed no change in efficiency of pred when split into 2 or 3 doses only a slight blip better when in one dose.

[Psyborg]

My family doctor started me at 90mg a day so 30 feel low now Rheumy had a small cow when he saw that and started me decreasing, but way too fast, 10MG a week. I got down to 20mg a day and started having issues. It was somewhere in the decrease that I started splitting the dosage up. Went back up to 25, then 35 and started to recover but now at 30 I'm having issues.

[Psyborg]

Psyborg, I too can't think of why they would wait so long before giving you ctx unless your doc eronously thought that pred alone will do the job. Is your doc a wegs specialist? I remember feeling achey forquite a while when I was misdiagnosed and given low dose pred only, but after being given ctx and high dose pred I was feeling much better in couple of weeks. It has been only a week since your ctx started so it may be that you just need a bit more time for both meds to do their miracle work. Unless the substitute doc knows your history well, he/she might not be able to fully assess you. Or you may be lucky and he/she has better knowledge of wegs. Good luck

I basically only was officially dx'ed last week with going to the CC to a specialist. Prior to that I was the worlds biggest mystery and the Rheumy kind of ignored the elevated ANCA because he thought WG always had lung nodules and my chest CT was clean. I don't hold that against him really as he was very nice and immediately suggested the CC when I found the fact that other symptoms were possible (In my case the TS).

So I just finally started getting adequate care. I might just be lucky that Pred was working so good by itself perhaps.

[Sangye]

Boy, my memory just stinks lately.... Thanks for reminding me why you were only on pred before ctx. Yes, I would say you were very lucky that the pred was working so well. Thank goodness you got to CC. They'll know what to do--either have you bump up the pred temporarily to cover while the ctx kicks in, or just wait it out and let the ctx start to work.

[Psyborg]

I think for my work that is the hardest part of this so far. My memory (which wasn't fantastic in the first place ) is pretty much shot right now. I'm a programmer and I've always had a pretty good ability to work through logic issues, but my mind won't work quite the same as it used to lately. And then I add on the Prednisone and rather than thinking things through I'm mad about them. LOL