Newbie

[cekubisz]

Hi, my name is Connie. I was dx with PMR this past April. I was started on 20mg of prednisone and have been gradually decreasing and now on 5mg. About 2-3 weeks ago I noticed my neck was very sore to turn both ways. I thought perhaps I needed a new pillow and that I was probably sleeping with my head downward. New pillow, no help. Now wondering if this is PMR related. Upped my prednisone to 7mg to see if it will help. Due to the holidays, I haven't contacted my Dr. Any thoughts on this would be helpful. I live in Michigan, US, but I read that this condition is very popular in the Uk, which happens to be my ancestry, and that it may be also genetic.

[Hindags]

Hi there. I'm from CA. No UK ancestry. But PMR nevertheless. You have done very well tapering 20 to 5 so quickly.

It seems very reasonable to up your dose to see if the pain goes down. I would also get in touch with your MD just to rule out something new.

If the neck pain is unrelated to your PMR, and doesn't resolve with physical therapy and time, you might investigate Botox. Several years of neck pain and some awful looking x-rays to boot....Botox really helped.

[Rose54]

Hi

I don't know about popular as none of use really want it

You have done a really fast reduction

It maybe that 5 is not enough or it could be that you have reduced to quick and inflammation is not under control but as Hindags says go up a bit and see what happens .

[SheffieldJane]

I wouldn’t say “ popular” but Northern Europeans are more prone to it. You have done a relatively rapid reduction in 8 months. I am at 7 mgs after 20 months. The disease lasts on average 2-4 years, the Pred just keeps the inflammation, pain and stiffness under control. The aim is to find the optimal low dose to relieve symptoms while the disease runs its course and to afford you some protection against complications.

Did the extra Pred work at all? That would be a sign that you need more I guess. At these sort of levels you need to be aware that your own Adrenal Glands will have to start working again. This can make you very tired.

I was given a neck X Ray as part of my PMR investigations and significant Cervical Spondylosis was found. So you could have another condition. I have had really bad back of the head and neck pain, on and off throughout.

My guess is that you reduced too fast and that can send you right back to where you started. Let us know what happens. Welcome cekubisz if this is your first post!

[Mitziecat]

A warm welcome to you. I was diagnosed in May this year & started 15 mg pred in June, now on 5mg from yesterday. I had neck and shoulder pain a few months ago & tried analgesia, heat pad, gentle neck exercise and tiger balm rub. It worked for me so didn’t increase the pred.

We must remember that our normal aches and pains will surface as we reduce. Much as I love being pain free with the medication, I aim to increase dosage when all else fails.

[PMRpro Ambassador]

You are not reducing relentlessly to zero - you are reducing to ind the lowest dose that gives the same result as that starting dose did. It sounds as if you have found it: you reduce in small steps until the symptoms aren't fully eradicated and then go back to the last dose that worked, wait a month or two and try again. Don't let a flare get hold - take a bit more quickly enough to avoid that. Below 7mg is a low dose, the same or less than the amount of corticosteroid your body produces naturally to maintain body function. While you are taking enough or more the body doesn't make any extra.

My neck pain is not so much the PMR directly but due to myofascial pain syndrome affecting the shoulder muscles. Trigger points of hardened inflamed muscle fibres form in the shoulder muscles and irritate the nearby nerves leading to spasm in shoulder and neck muscles. It is more common alongside PMR (caused by the same inflammatory substances) and responds to higher doses of pred. A good therapeutic massage therapist can probably help mobilise the trigger spots. I also used Bowen therapy which helped me a lot.

No, popular isn't quite the word I'd use either! Common (though I'd rather be popular than common really) - it is the second most common rheumatic disorder after rheumatoid arthritis. Which most people have heard of, even if they think it is the same as osteoarthritis. So why haven't they heard of PMR?

[yogabonnie]

I know I sound like an ad but MY PILLOW PILLOW is the BEST!!! changed my neck pain from a lot to NONE. It seems like a strange and flimsy ratty pillow but it is the BEST!!! Husband convinced and son-in-law with bad neck pain for years.

[cekubisz]

My apology regarding my text on PMR being popular in the UK . I should have stated Northern European .