Help!

[Logic]

so I called my they my because I have had a stiff neck since April and it seems to be getting worse, achy arms and legs and trouble getting up, reaching for things etc. and I am so tired at times. These are basically the original symptoms I had when diagnosed with PMR in December 2018. I was given 50 mg of prednisone and tapered down till November 2020 pretty uneventfully. The nurse I spoke with told me doctor said it was not PMR because a recent blood test for C reactive protein was 2.8. It sure feels the same. I feel dismissed and don't know what to do next. I get the impression that doctor is extremely busy.

[Kendrew]

Hi Logic. Others with more knowledge will be along soon, but just wanted to comment that it does seem rather like your symptoms may have re-emerged again. You don't say what dose you're currently on but you may have dropped below the dose you need to manage the inflammation.

The CRP result can't always be used in isolation as a diagnostic tool for PMR......I have always had normal CRP and ESR results despite having PMR for over 2yrs.

I think you probably need to have another discussion with your GP about increasing your dose again as your symptoms are indicative of PMR. I hope you can have a helpful discussion with your GP and sort things out asap.

[Logic in reply to Kendrew]

Thanks for the input. I was beginning to think I was nuts. I stopped prednisone last November 21 after a taper from 50 mg. I never completely got rid of the achy arms and legs but felt lots better and was so glad to get off the prednisone. I did have really bad numbers on blood work when I first was tested in December 2018 that gradually came down but good numbers or not, I feel terrible. His nurse made it very clear that he felt there was no need to see me. In fact she said he suggested no ask my PCP for a neck X-Ray.

[mgrogers99 in reply to Logic]

I would request the neck x-ray. You can then rule something out perhaps.

[SheffieldJane]

This is not satisfactory or particularly informed treatment. Are you off Pred completely now? Not everybody shows high inflammation with CRP results. Especially not if you have been on high dose Pred. 20% of patients never show abnormalities. It sounds like you came off Pred too quickly and are now experiencing the gradual build up of inflammation and the return of your PMR symptoms.It is unusual for PMR to clear in 2/3 years. I would not be satisfied with the nurse being the intermediary. You need the opinion of an informed doctor and never to feel dismissed. I would be seeking a better doctor.

[Logic in reply to SheffieldJane]

To Sheffield Jane and all who replied to my plea for help, thanks so much. I am now trying to work up the nerve to call my PCPI am finding that being 81 years old is quite a handicap in that I am treated differently than before, like I was suddenly incapable of speech or thought at an adult level. I pay a fortune for good insurance but have to get past the telephone "gatekeepers" to get to see my doctor. It is a large group practice so changing docs doesn't matter

You still have to get through the telephone answerers. I rarely go in except for checkups so it's not like I'm a pest but it's very hard to see your primary care unless you are very agressive and pushy.

[SheffieldJane in reply to Logic]

Do you have a friend or family member who can back you up? I hear you about not being taken seriously all of a sudden. A lot of female, older people can relate to this. Our money is as good as anyone else’s and we deserve good, efficient service. Don’t give up, consider making a complaint. The problem maybe Nurse Ratchet the gate keeper. Let us know how you go.

[Bcol]

Morning Logic, sorry to hear you are having trouble again. They may be busy again in the surgery but in my humble opinion a totally unacceptable attitude from your doctors and completely agree with everything Kendrew and SJ have already said.

[PMRpro Ambassador]

A lot of doctors appear to be doing a very good act of being busy - what with one can only ask as it rarely seems to be seeing patients! He's wrong - the CRP can lag behind the development of symptoms and since relapses aren't always the same as the previous episodes the markers may not rise at all - up to 1 in 5 patients has markers that never get out of the normal range although that doesn't mean they aren't raised for them. Trends are important - increasing level, even if not large rises, are significant.

Stopping last November and noticing symptoms now is a very common timescale - the PMR hasn't actually fully gone into remission, it is just at a VERY low level so it has taken time to get to where it is noticeable. PMR is not a 2-year illness whatever some doctors will try to tell you - only 1 in 3 patients is off pred for more than 6 months after only 2 years. Half of patients are on pred for more than 6 years, albeit at a very low level. And at your age, it is likely the PMR will last longer.

You are obviously in the US - in the UK I would say discuss it with your PCP and see if they are more sympathetic and will let you have a trial of pred - the chances are you will manage on under 5mg, possibly well under 5mg. So worth trying even with a US PCP> Neck x-ray my foot!!!!!