Latest rheumie visit left me a bit confused

I have had PMR since Jan 2016. I've been down between 6-8 mg prednilosone for about 6 mos. pain keeps returning, etc. Fatigue is the worst of it for me, has been all along. I Have significant memory issues, insomnia, weakness and very low stamina or endurance. I have headaches all the time, neck pain, back and hip pain, sometimes shoulder pain. So this visit to my rheumy he announced that 1) since my markers have not been elevated since FEB 2016, and that my pain seems to be unusual patterns for PMR, He thinks I may also have fibromyalgia. He also thinks that my depression getting worse may be creating or adding to the symptoms (cognitive, too). So, in concert with my GP I am now on a new antidepressant cymbalta (had been on Prozac for 25 years), I have started counseling twice a week and am determined not to sway from taper, 1 mg every 2-4 weeks. I'm struggling not to think this is just all in my head. I know it's not, but I'm kinda confused. Why have I been on this steroid all this time with no elevated inflammatory markers, and why isn't that still the case?

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  • Hi Zacsmimi, I'm not sure I can answer your questions, but, as a counsellor myself I am glad that you are going to give that a try as it can be helpful to explore the experience of having all these confusing things happening and feel listened to, understood and supported. I went back into therapy when I was finding the whole thing too much and I have found it helps me a lot. I do also wonder if you are not on enough Pred. ( I know, change the record!) . It is always so difficult to know exactly what is going on- often it is trial and error. It seems to me that doctors keep changing the diagnosis when the PMR does not seem to be behaving itself because they don't like that. Of course it is also true that PMR can morph into something else or cause other things- I have now developed OA in both knees and a hip which causes a lot of pain and I don't always know which pain is which and therefore what to do about it, even after nearly 5 years.

    I hope the doctors have got it right for you and that find some benefits and improvement.

  • Hi Zacsmimi,

    Oh dear, you are in a bit of a pickle, aren't you? Can't comment on the possibility of Fibro, although many on here will I'm sure.

    I would say that some of your problems may be because you are around the level where your adrenal glands should be waking up and doing their work - that's very often a difficult time for people, certainly was for me!

    Don't really understand your Rheumy -your markers shouldn't be elevated when you are on the correct level of Pred, and the inflammation is under control - many never have raised markers even before treatment is started, which is why it takes some time to get a diagnosis. However, the ESR measure can be affected by other things, so it's not really very reliable.

    Why are your symptoms unusual? I would have said they are familiar to lots on here.

    As for your taper, would say that 1mg every 2-4 weeks might be too quick, both for the PMR and the adrenals. Why not try 0.5mg and use a slow tapering plan that takes a number of weeks to get from one dose to the next. Much easier for your body, and also gives your adrenal a better chance.

    Do hope your new medication and therapy help you feel better soon. Best wishes.

  • It seems to be a day for rheumies leaving patients confused!

    They just don't seem to have the courage of their convictions do they? Part of the trouble of course is that they have such unrealistic images of what PMR is and how it behaves and when it does what load s of us recognise but they maybe don't they jump to the conclusion that it isn't PMR.

    I just said to the other lady who's been left confused - I wish they would concentrate on finding something that gives a definitive diagnosis and then monitors what is going on. That would be far more use than desperately trying this, that and the other as a "better" drug for PMR.

    And as Suzy says: does a bit more pred improve the pain?

  • I do so agree. The new rheumie I saw in January looked at me and said that I do not look like someone with PMR. I am very impressed if she can diagnose PMR by looking at people. She then wrote to my GP saying I had atypical symptoms of PMR. Reading between the lines I think she was saying I don't think she has PMR!

  • Asymptomatic symptoms? You sure?

  • Sorry typo atypical, brain going!

  • I assumed that was what you meant - but given some of the rheumy stories recently - who knows ;-)

  • It's not at all like the pain I had the first month... the hot , red , swelling in joints....deep aching, restricted mobility, etc. I do like my doc, I think he's been very reasonable, and he did not say I didn't have PMR, just that he thinks that perhaps the exacerbation of my depression is muddying the water. He looked for pain trigger points and he said the exam indicated it could be fibromyalgia as well... I do have chronic back issues, always have. I had plenty of pain before diagnosis, kept under control by chiropractic and massage. I think a lot of my misery now is honestly caused by the pred itself... excessive fatigue, insomnia, no stamina, memory issues, lack of focus, shaky, weak... increasing the pred had helped some with pain in the past, but the other symptoms intensify so it's a delicate balance. Headaches are not new to me either but DAILY headaches are not the norm and that's what I'm having now. But reducing does kind of make me anxious. I certainly don't want it to be worse.

  • Zacsmimi - I was diagnosed in Jan. 2016 (after a year of pain) when I could not lift my arms and my rhuemi too said I could also have fibromyalgia. Have reduced prednisone to 5mg (from 20mg) gradually and take 20mg cymbalta at night (because it makes me tired.) Have been doing acupuncture for two months from Chinese doctor and it has made a tremendous difference in dealing with pain of muscles and headaches. I've tried to go down to 4mg but fatigue and aches set in. Bloodwork was better last month so hopefully I am getting a normal. Still take a daily nap most days and have moments of shaky from blood sugar - stinks that prednisone has increased blood pressure, sugar and cholesteral but I am now considering it is a necessary evil. Hope you get to feeling better soon. I know Chinese medicine is not for everyone but it has helped me.

  • You sound just like me - I had similar chronic back problems before PMR that my osteopath and massage made a major difference to. So did Bowen therapy. Eventually identified as myofascial pain syndrome here and dealt with in a targeted manner by mainstream medicine.

    Beware the confusion between fibro trigger points and myofascial ones! Before I got the PMR diagnosis I had done months of my own research and found that some of the tender points I have match some of the fibro ones - but I didn't have enough to get to fibro (which it wasn't anyway as it all responded to pred, fibro doesn't, just as fibro doesn't raise ESR/CRP)). My remaining tender spots do however match the MPS ones. All the other tender spots have faded with pred - shins, back of ankles, biceps and a few others. It doesn't kill me to have my bP measured now!

    But you can have pain without raised markers - due to the underlying autoimmune attack on your tissues I suspect and MPS.

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