Trying to get to control level of pred

Diagnosed 2 March 2023, dosed with too fast of a taper to 10 mg, while also launching into a month of high activity, I ignited a fire storm of pain the first month. By 27 March I increased to 15mg. At 5 April I increased to 20, at 12 April I increased to 25mg. (Had to get back to the rheumo and bring him along , and get more tablets!) I have experienced enormous relief at 25mg, but still have shoulder/deltoid discomfort. The pain in my legs at onset is now minimal, but my arms had grown worse since initial diagnosis. My question now is how long do I stay at 25mg before I dare to begin to taper? The should/arm pain has also greatly improved at 25mg, but remains a factor. It improves during the day, but they are sore once approaching next dose, especially my right/dominant arm. I've been taking my dose at 2am, but am pushing it back closer to bed time (which is typically 11:30p). Since I started the treatment journey "backwards" I'm trying to determine just what my pred level should be at this point.

[SnazzyD]

Hello there. May I ask what you do in the week or what a typical day looks like? What sort of thing was your “high activity”?

[Hidden in reply to SnazzyD]

When I got diagnosed on 2 March, I was not given any info on PMR until I discovered this forum about two weeks in. I am a musician and sing in a Symphony Chorus. We had two performances in March which entailed 10 rehearsals/performances. All intense, but of course also wonderful. I was also finishing up some accompanying for local public schools. Throw in a planned weekend with my 5 grands in between. This was all in March. Once I learned about the reality of this condition, I reduced my activities by 90% by the end of March. That reality in and of itself was a gut punch, but I know, and am accepting (at least trying to) that my previous lifestyle will not work.

[SnazzyD in reply to Hidden]

Oh, it really takes the biscuit when doing things that feed the soul are too much. It seems that it should therefore be good for the body too but perversely isn’t..for now. The music’s probably fine but it’s the bits in between that aren’t. Being philosophical can be a pain!

[Bluey-1 in reply to Hidden]

Pacing and a change of lifestyle is key and so difficult, at least I have found it so. However, deciding on activity related to your body and not your mind is crucial. I have had to make drastic changes with GCA not to overdo it. I fade, just stop if I do. However, I have tapered successfully over the winter from very high doses of steroids, taking it slowly. I am convinced this is because I’ve eaten healthily, taken exercise when up to it and generally taken it easy, avoiding as many stresses as I can.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you still have issues at 25mg you need to stay on that dose long enough to get rid of them.

Most guideline say 3 weeks at initial dose, but some of us say 4 at least although 6 is much better.

But you have accept some responsibility -and not think popping a few pills will cure everything -it won’t.

You have a systemic illness which means you have to adjust your lifestyle accordingly. Doesn’t mean sitting in a chair doing nothing -but does mean pacing yourself and doing what your illness will allow.

Have a read of this for info - but if things don’t improve you need another discussion with your Rheumy-

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thanks DL. I will give the 25mg some more time. I have definitely responded positively to it, but guess I need to apply more patience. I hear you about the activity level. I just didn't know that was so critical until I discovered this Forum and then initiated additional learning, discovery and review of this bloody condition. That said, I'm starting up with a PT who is very familiar with PMR and is going to coordinate gently reconditioning with my eventual taper. One thing for sure is that I am not a pill popper - quite possibly to a fault at times. You do not want me to get started on my opinion of the pharma industry in the USA...

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Most of us have found out the hard way about activity levels -and not often discussed by doctors, some have very strange views of the illnesses and steroids.

Let’s hope your PT leads you along the right path -and good luck 😉

[Nextoneplease]

Hi stcecilia 😊

I agree with others, I would stay on 25mg until you feel the pain is under control and that you feel stable on this dose. Can’t think what they were doing, reducing you so quickly! But you’ll get there 😊

Also like most on here, I’ve had to restrict my activities a lot since having PMR. I found it very hard to accept, I have to say, and two years on, I still struggle with the balance…..but I’ve got down to 7.5mg (fingers crossed it stays that way) so there’s light at the end of the tunnel 😊

Really, pacing yourself now will really pay off in the long run, so stick with it.

All the best 🤗x

[PMRpro Ambassador]

The dose you need at the moment is the dose that gives symptom relief. It does sound possible that the pred effect isn't lasting the full 24 hours, it doesn't in some people. You could maybe try taking 18mg as the main dose and the rest later enough in the day to extend the symptom relief to the full 24 hours. Or 20mg as the main dose and the 5mg a couple of hours before you expect the pain to start up again. It is a bit of an experimental thing.

[Hidden in reply to PMRpro]

That's a great suggestion. I think I might go ahead and try a split dose approach.

[PMRpro Ambassador in reply to Hidden]

You can always go back if it doesn;t have the desired effect.