ADVICE PLEASE

[Amkoffee]

I'm asking here rather than my doctor because I'm embarrassed about what I've done and how ignorant I have been. Not only that but my rheumatologist gives me the utmost Trust in allowing me to determine the best prednisone dose for me. So after about a week of unrelenting horrible pain that I had been attributing to my various arthritis joints and sciatica it finally occurred to me that this may very well be a PMR Flair and I should treat it as such. The reason I expect this is because I have been trying to taper much too fast and now I'm paying the price. My life right now is in chaos and this is why it didn't even occur to me that I needed to up my prednisone dose and I feel foolish but that is what happened. So why am I writing to you? I had tapered down to six mg a day and I realize I need to increase my dose but I really am unsure how high I should go. I know typically the advice given here is to go up to the dose where your pain was under control but I really don't know where that was. Any suggestions would be appreciated.

[TheMoaningViolet]

Hi, I am so sorry you are going though some sort of turmoil and it would not be surprising to experience a flair under the circumstances. However, you don't know whether this is the case, so would it not be best to contact your doctor especially as you seem to have such a good relationship. No one expects you to get things right every time and showing them that you trust them and want their help is only going to make the relationship even stronger.

[cycli]

Amkoffee. I am assuming you just have PMR. You don't say when it started or what dose you were prescribed when diagnosed. So, I am going to guess you were on 20mg or 15mg initial dose. First question, did that reduce/eliminate the pain within a short period? Second question, why did you decide to reduce fast? No blame is ascribed here. We all dislike the side effects of pred so understand. A bit more information would help those knowledgeable to offer sound advice.

[yogabonnie]

oh Amkoffee ... I am so sorry first for all you have gone through lately. So many things. It is a wonder you are still standing. You are right along with me as far as having had this fool disease since 2017 and it is NOT easy. Are you still on Kevzra *is that what it is called? along with the prednisone. I think maybe talk to your doc. She will certainly understand and set you right again. Much of this is stress I should think. I admire your energy and hope and I think it can all be squared away. If it were only prednisone I would say go up 5mg then drop fairly quickly back to 7 then get back to DSNS. BUT I don't know how the other medication works with the prednisone. Be kind to yourself. I understand my relaxations no longer work on this site, but if you send me a DM I will send you a copy of it. good luck!

[PMRpro Ambassador]

Don't feel embarrassed- you aren't the first and won't be the last to do it.

I suppost since you have no idea at all where the flare started, it isn't a simple case for the flare protocol of add 5mg for up to 2 weeks and drop back to the dose above where you flared.

I'd suggest add the 5mg to where you are and see if that works. If it doesn't you will have to add more but we'll worry about that if it happens. So that is start with 11mg for 2 weeks.

If all is then well, instead of dropping back the last dose, drop by 2.5mg and see if that is still enough, Stick there for a month to be sure.

How fast had you been trying to taper? Because that is quite critical.

[DorsetLady PMRGCAuk volunteer]

In previous posts you indicated that you didn't think this bout of pain was a return of PMR.. so are you now saying it is actually PMR?

See you restarted at 15mg... some 10 or 11 months ago - with MTX added in.. is that correct?

Would agree with PMRpro - try the usual flare protocol - but only drop by 2.5mg after the 2 weeks on 11mg... and stop there for a few weeks, re-evaluate situation, and then take it from there.

Once back on track, maybe employ one of the slower tapering regimes we always talk about.

[Polygolfer]

I’d say swallow your embarrassment and speak to your doctor. Steroids are a very serious drug and can have quite serious consequences if mis-managed. Only you and your doctor have the full picture of your current health and an understanding of your past health history. As your doctor he has a duty to treat and look after you, as his patient it’s your responsibility to reciprocate the trust so that, together, you can give yourself the best chance of a successful treatment and reduce the chances of any unfortunate consequences

[Gimme]

You have nothing to be embarrassed about. The trouble with tapering is that you don't always know if you are overdoing it, even if you do everything right. Hind sight is a wonderful thing. As my doctor pointed out, even if the doc wants me off pred and I wanted the same, my body may well have other ideas. I got caught out earlier this year and I had been tapering many times more slowly than the rheumatologist wanted me to taper. Lots of people taper and are pred free for some time before they flare, so it might not even be something you did. The important thing is to recognise when you are not doing well and to get advice to help get you back on track. I think you should be proud of yourself for taking good care of yourself.