Since dropping to 5mg from my temporary 8mg, I have only been on 5mg for 3 days. I am now experiencing pain across my shoulders and neck pain along with fatigue. I failed to mention that in my previous post. I'm thinking of jumping back up to 8mg ( if that is enough) and waiting to see my Dr. on the 12th of February.
Again, it is so comforting to have this blog available and be able to listen to people that have gone through what I am going through. 👍
It is clearly not enough Pred. Your idea of increasing to 8 mgs seems needed, until you see your Rheumatologist.
thank you Jane
Have replied to previous post….and would just say that I appreciate you are concerned, but because most of the members on this forum are in Europe and in a different time zone to you, you may not always get an immediate answer - so just be patient.
Reply replicated here -
Definitely too much to-ing and fro-ing…and in retrospect you probably should have tapered down a lot slower from initially being on 5mg.. but that water under the bridge
So your only option may be to settle at 7 or 8mg a least month [as the usual advice for dealing with a flare hasn’t worked] - and then taper.
But you do need to converse with your doctor. ..and both be aware that for some people PMR lasts a lot longer than 2 years, .and that some of your issues may also be adrenal related.
I think your PMR is proving the point that it doesn’t usually go in 2 years. A while back you had got to zero and since then a quick read of your posts sounds like you have been going back up and then going back down in the manner that is more usual when someone has a flare due to a blip from illness or something. It may be that you need to see this as the PMR was never under control from a while back. It might be helpful to read back all the responses you’ve had after each post that says you have pain.
As long as 8 months ago you were at zero and I wonder how long ago you have ever been comfortable and at what dose that was. It might be worth taking stepping back and looking at the whole picture rather than backing up after each failed charge at zero and just repeating the process as if it was the first time it’s happened. It would also help to have this overview to help your Rheumatologist work out what’s going on when you see them this month.
How were at 10mg?
It has been so long ago, I cant remember how I was at 10. But overall, when I started Prednisone, I was always at a race to get to zero inspite of residual pain. That may have been a year into tapering down until I came across this website. This website has opened my eyes to realizing that it's not my race to get to zero, it's PMR's decision to allow me to do so. In that respect, I started tapering in 1/4 of 1mg tablets, but that may have been too late since I had tapered well below my threshold and never fully controlled the pain at the higher level of Prednisone. So it is my fault, and I realize that now. Going forward, I'm wondering what dose I should jump up to that would safely take care of the pain and fatigue and how long should I stay on it? I'm thinking ----8,9 or 10mg? How long to remain on it---2,3 or 4weeks? If I can have all of you reply to this post, it would help. Again, thanks!
In reply to DL, I usually post on this site before I go to bed. This way, while I'm having my breakfast in the morning, I'm reading all of your useful suggestions before i take my Prednisone for the day. 😀
That's good, it's just that you posted twice very quickly with same question I thought you were getting anxious because no- one had answered. That's all...
I made a suggestion about dose in my reply below - if 8mg is enough, that's fine. If it isn't, then you may need 10mg. Stabilise at that dose for at least a month, longer of necessary. Only you can tell.
Already replied to the other thread - you need to go to 8mg, stabilise there for a month or so and start the slow taper again. PMR can flare up even during the normal course of slowly and steadily subsiding. Have you been under stress or done more recently?
You can edit your posts - you could have added it to the other one. It is quite unusual for a post to be seen immediately until Europe wakes up where most of us are!
You have been in this situation for months - and I suspect every post has a reply from us saying much the same as we are saying now. You cannot cheat PMR, you cannot hare down to a low dose without the risk of the inflammation building up again and symptoms returning. As piglette says again and again - PMR always wins.
how does overactivity impact on PMR & GCA?
Bladder pain...is this PMR?
Flared once again at 7.5-disappointing.
Tapering
