Prednisone Taper

[NikkiNicole]

Hi Everyone! :unsure:

So I talked with my rheumy yesterday. I had emailed him because when I started Prednisone, he said he wanted me to begin a taper at two weeks. Unfortunately, I only have symptoms and a lung nodule to gauge my feeling on so he can't really track me without updates from me on how I am feeling. I emailed him that I'm still coughing up speckled blood, I don't cough all day but I do cough every day. My nose and eyes burn, the sinus headache, and the fever every single day (low-grade, not to worry). He called me and said he didn't want to keep me at 60mg a day if the symptoms aren't improving and wanted me to cut back to 40mg starting today.

Does this sound normal? I mean, to me it was weird that I'm not improving that quickly and he wants to take me off the meds? At least to taper back so I am not at such a high dose. I think he would rather I stay longer at a lower does so it can work on me? I don't know. Again, I cannot start Cytoxan until my radiation is finished so I doubt I'll ever feel better until then. I mean, my immune system is psycho and the prednisone isn't going to stop my immune system from doing what it's doing, right?

I'm going to do what the doc says, of course. He also said he is referring my information to the same pulmonologist as well to see if she has any input. I won't hear from her until next week obviously.

I just feel like I'm in a holding pattern. Sometimes I feel like my rheumy is so hell bent on this being something other than WG. Yet, all signs and biopsies point to it. I don't want to be super sick before he finally is like OK! I mean, I know he is going to give me the next round of meds as soon as he can. IN the meantime though, I kind of feel like I'm more of a bother to him than a patient. I don't know.

Am I being weird? Oh ... is there anything I should expect with this taper? Any fun new side effects?! :confused1:

[Dirty Don]

First of all, nothing weird about anything to do with WG and one's expectations or hopes! That being said, you do need the Cytoxan, or whatever, to calm down/restrict the WG attacks. Pred is an anti-inflammatory. Reducing it is good for the most part as long as the inflammations continue to drop accordingly. When I came out of hospital, I was on 60+, was dropped to 60 immediately, within 2 months was dropped to 40, have been halving it since then, am now down to 4mgs/day after a year and a half. I appreciate the reductions and have continually felt fine with them...no side effects of dropping too fast. While I am anxious (OK, I don't get anxious very much anymore!) to get rid of the pred, I'm in no hurry as long as the tapering and the drug is doing its job. ...still looking for my coffee...

[annekat]

I'd had pred now and then before my WG dx but know so much more about it now, and it is very different when using it long term, as we must. My sense is that you should continue at the 60mg. dose for now, considering that you may have WG, your symptoms aren't improving, and you are unable to start CTX yet. I hope the pulmy has a different opinion that your rheumy will consider. I think the rheumy is too anxious for you to taper when you don't know yet what is going on and need all the help you can get. I understand that pred is an anti-inflammatory but also thought it has some immunosuppressive effects, which you need while waiting for the CTX. There are those on here who know more than I and I hope to hear from them.

If you do drop to 40mg., I don't think you'll notice anything much, maybe less incidence of jitteriness, appetite issues, or whatever else you've been attributing to the pred. But I do figure that your symptoms won't improve and could get worse. My two cents worth.

I know you were trying to get lined up with a specialist in the Bay Area, and I hope that happens soon! I realize that not being able to take CTX yet is holding you back, but feel that a specialist could handle your case better nonetheless.

[Alysia]

Hi Nikki,
I think it is your right to ask and doubt and suspect and check untill you find the exact option.
It is your doc responsibility to give you all the answers you need, "bothering" or not.
I didnt taper pred when the doc I had then, told me to do it. I waited another week and only then started.
but I didnt have radiations. are the radiations relevant to pred ?
maybe you should ask your other docs.
good luck.