newly diagnosed

Welcome and I'm sorry you have PMR.

If you have significant morning pain you might want to try splitting your Prednisone dose so you take a small portion in the evening. For example, if 15 mg is your total dose maybe take 10 mg in the morning and 5 mg in the evening. I was able to eliminate the morning pain by doing it that way.

Some doctors may not agree and say you should take your entire dose in the morning. My doctor was aware of what I was doing and encouraged me to split my dose if it worked better that way.

Just as an addendum to splitting your dose. I didn't need to split my dose as I tapered lower because I decreased my evening dose first. By the time I tapered to 10 mg I was taking it all in the morning.

I believe it is the morning pain that is the more crucial part of pain relief. I would wake up early between 3-4 a.m because of pain. The disruption in my sleep pattern contributed to my problem. Taking too much prednisone in the evening might make it hard to fall asleep. You might need to adjust the morning portion and evening portion to find what works the best for you.

Only decrease your dose when you can get through the night and wake up in the morning with minimal pain but not necessarily no pain. This is a good indication that you can decrease the evening dose while leaving the morning dose the same. You will wind up taking your entire dose in the morning which will keep your doctor happy.

Everyone is different. Try to keep your doctor informed and they might let you "experiment" a bit to figure out what works the best for you.

One final addendum ... Ask your doctor for a supply of 1 mg tablets if you don't already have them. I ended up with 20 mg -- 10 mg -- 5 mg and 1 mg tablets. It made my life simpler when I tapered.

My doctors trusted me to only take what I needed and I promised to keep them informed. My doctor wrote "taper as directed" on my prescription without any fixed tapering scheme.

My doctor offered recommendations and I kept them informed. We eliminated the need for a set of rigid rules. It is a process of adapting as needed ... Nothing was set in stone otherwise I would have been miserable most of the time.

Hello @anncoco57 ! You may want to share a bit more about what you are experiencing . Where do you live ? who prescribed 15 mg dose, your PCP or a rheumatologist ? You will not "hate" being on Prednisone when at the optimal dose* you will miraculously be rid of morning pain and stiffness ! @johnbishop and I usually encourage new patients to keep a pain journal /database .

*So for me, and many others ( who started on this journey at about the same time last year ) I was bumped up to 30 mg Prednisone. Voila - it was amazing !

have you seen this useful website. PMRandIL6.com ? I will attach a few more manuscripts , my favorite one about how people describe the pain and stiffness will take me a sec to find !

I got so much out of being on this forum - the support from everyone has been a big help ! -- nyxygirl ( Maria)

This is one of the comments in this paper attached below .

When I had a terrible flare up- before I was bumped up to 30mg -I felt like I was glued to the bed !

“I probably just started off with a general sort of ache, a stiffness. Um because I always used to go to quite a lot of classes, sort of aerobics and things, and when I came back I wasn’t sort of recovering quite as well. You know, I always ached a bit when I came back, but I was aching a lot more, really stiff. Um and I just thought, “Oh it’s me age, I’ll just sort of work through it.” But then sort of like three months on, like you, it was sort of in bed and just—just agony, just really stiff, I couldn’t sort of get me jumpers on or anything without help.”

Hi thanks

I’m 67 and live in the uk . I’m used to getting up and going in the mornings, now bits at least 10 am before I can do anything

The steroids are spacing me out , my sleep patterns are all over the place and I’m gaining weight .

This is playing havoc with my moods

I have a doctors appointment today so will see what she says

Has anyone had any luck with changing thier diet to avoid carbs etc

The morning pain varies at best it’s a fluey like feeling and at worse it’s bad pain

Hello @anncoco57, I would like to add my welcome to Connect along with @nyxygirl and others. Changing my diet and lowering the amount of carbs I take in definitely helped me in my second time around with PMR and I was able to taper off of prednisone in 1-1/2 years vs 3-1/2 years the first time with PMR. It also helped me lose 40+ pounds and keep it off which has been a life long struggle for me with weight. There is another discussion which you might find helpful.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

I would be interested in what a UK doctor tells a newly diagnosed PMR patient.

Is this your second visit with the same doctor or are you being referred to a rheumatologist?

The "guidelines" for the treatment of PMR are subject to interpretation. Some doctors regard the "recommendations" to be rules. Those doctors tend not to listen to the patient.

The guidelines for the treatment of PMR are summarized in the following link.
https://emedicine.medscape.com/article/330815-guidelines
There are tabs at the bottom of the link that discuss treatment options and the problems associated with long term corticosteroids. I think in the USA the approach is to encourage patients to taper off prednisone as soon as possible.

There doesn't seem to be any tapering regimen that works for everyone. I got off Prednisone but it took me more than 12 years. I didn't have any success tapering off Prednisone until a biologic called Actemra (tocilizumab) was tried. It only took me a year to taper off Prednisone after the biologic was started back in 2019.

Prednisone was good for my pain but it was very hard on my body. That was what my rheumatologist told me and she tried everything to get me off Prednisone.

My rheumatologist was my best ally but these forums are helpful too. My rheumatologist and I allied together and we finally found something that worked for me.

It’s my third visit to the doctor and she has now referred me to the rheumatologist but appointment not till 19th October. My private health insurance says they won’t cover it so on the nhs

15mg didn't work for me, either. It was awful. I have osteoporosis. With the terrible side effects of Prednisone, I already felt that I'd made a deal with the Devil... only he didn't follow through with his side of the bargain. It was agonizing to put my elbows up and back, which is something you do a LOT (while getting dressed, for instance) - near-impossible, felt as though my arms were being forced against the way they were built. A week later the doctor bumped me up to 25mg. Pain was slightly less the next day, but it still took a few days before there was real effect. So much for the stories of instant relief.