A pain in the neck!

[61EllieCheshire]

Having been on 4mg Pred for over two years (and having had an lecture from my Rheumy, mentioned in an earlier post) my GP suggested trying to reduce again by a slow taper, 1mg every eight weeks. I’m on week seven now and have been taking 3mg and 4mg on alternate days for the past two weeks. All my usual aches and pains have returned in my shoulders, arms, hips and legs. However, the worst pain is in an area that hasn’t bothered me before. It is at the base of my skull at the top of the back of my neck and is really getting me down. Is this a common site for PMR pain?

[PMRCanada]

I developed soreness in the exact same spot over the last month or so. My scalp is tender in two spots back there. I mentioned it to my GP who asked about blurred vision, headaches, etc which I don’t experience. I find Bowen Therapy really helps with neck, scalp and shoulders. Sounds like your latest drop is too much given the return of your old and new symptoms. Smaller drop would be better, have you considered trying dropping by .5mg (that’s what I’ve been doing since getting below 10mg). Your rheumy should be pleased with 4mg as this is a “safe” dose with less chance of side effects. I wouldn’t try lowering anymore while symptoms are present.

Good luck and hope you get some relief (going back up to 4mg might do the trick....just a suggestion).

[PMRpro Ambassador]

No - but it IS a common site for GCA pain so PLEASE get it checked out. But really - 1/2mg can make a major difference and why on earth doctors are so twitchy about doses below 5mg really defeats me.

[61EllieCheshire in reply to PMRpro]

Will do, thanks.

[Hidden]

It is something I get quite a bit. Often my occipital lymph nodes feel swollen. Last week they were swollen as we're a the glands/nodes under my left ear and shooting pains for 30secs a a times. I have mentioned it twice to gp and Rheumy and s/he just rejected it as a problem. It's the fact that GCA is always in the back of one's mind that makes me keep mentioning it.

The swellings have gone now as has mist if the pain in my neck and shoulders. It is still worth getting these things checked out.

[Thomas45]

My doctor, not Rheumy, told me about PMR and about how prednisolone helped. He then prescribed a large quantity of prednisolone and said that I knew my body better than he did and that I should slowly reduce the dose, bearing in mind that it could take several years.. He knew that I could be trusted with a large supply and I was told to ask for more when they ran out. I did and reduced by the dead slow method. I didn't stick to a timetable but reduced when I felt it was appropriate.

I stopped taking pred after 3 years and 7 months.

I wouldn't have gone from 4 to 3 as quickly as you appear to have gone.

[Dewdrop456]

Hello .I suffered very badly from neck/base of skull pain.It was like being hit with a baseball bat! My doctor told me to go to a chiropractor.That was before I was diagnosed withPMR.

When I am on the correct dose of Prednisone my neck pain goes away.It seems to be an indicator for me to increase my dose.Sometimes it’s one shoulder or one hip but the neck pain is the very worst.It sounds like you are on the wrong dose in any case because of your other pains.

I am still on 6mgs after two and a half years .I have had to adjust my dose according to the demands made by the horrible PMR not by the doctor’s wishes.

This is just my experience.

I do hope you feel better soon.Best wishes.

[Ciar]

It was a spot that hit me very hard early on before I had any prednisone for my PMR. Since I’ve been on prednisone, it hasn’t been as much a problem for me when I’m having a flare, though it sometimes comes back more mildly. It has made me worry about my risk for GCA. Currently on 5mg, and I’m feeling another flare coming on with neck, shoulder, pelvic girdle and thigh pain, but not base of skull, thankfully.

[HeronNS]

If GCA ruled out, these problems with neck could be issues with spine. Maybe stress and tension in the area causing tight muscles, a kind of vicious circle which can be broken by the right kind of massage and an appropriate exercise program.