Fibromyalgia v GCA/PMR

[Broomser]

I was diagnosed with "probable GCA" by Rheumatologist just under 3years ago. I was feeling unwell (general malaise, aches and and pains, headache, low appetite). GP said my symptoms were quite vague but took bloods as a routine check. GP called me next morning and told me to go to the hospital immediately as both ESR and CRP were very high (100+). Further tests at the hospital confirmed the raised markers. Examination and other checks gave no cause for concern. They suspected GCA so eyes were checked and OK. I was ut on 60mg Pred and TAB was taken a week later and was negative. I have tapered the pred dose over the 3 years, with some yo-yo at times when symptoms returned. Each time I was symptomatic, GP checked bloods, and at no time was ESR or CRP other than normal. The ONLY time my ESR/CRP were elevated as at the time of the initial diagnosis.

I continue to be unwell most of the time with aches and pains, fatigue, and feeling depressed. I go to rheumatology every 6 months and get the same advice, to do a slow taper and get off pred ASAP. They wont entertain use of steroid sparing drugs.

I have come to suspect I may not have GCA. My symptoms are certainly more suggestive of PMR or Fibromyalgia. I am leaning towards Fibromyalgia and considering stopping pred (from low dose of 5mg). I am concerned about cumulative dose of pred, with no sign that it is wholly effective, and with the side effects. Pred does not help Fibromyalgia as it is not an autoimmune disease. Tramadol is very helpful for Fibromyalgia (but not considered appropriate or effective for PMR). I have been taking Tramadol and it gives me great relief in times of need.

I am avery interested in the views of the experienced folks on the forum.



[PMRpro Ambassador]

It is the inflammation that is the difference - there are thoughts that fibro may have an autoimmune component but it isn't inflammatory. If tramadol works for the pain it is a fairish indication that it isn't PMR and it may well be the left-overs of being on pred plus the adrenal insufficiency that is almost certain you have.

However - you must NOT "just stop" pred, you MUST taper the dose because 5mg is enough to replace the cortisol the adrenals normally produce but don't while you are on a higher dose of pred (above about 7mg) but which returns slowly as the pred dose falls. You must continue to taper to zero and even after you get to zero it can take up to a year to get back to be fully reliable.

This is a classic case of "treat the patient in front of you not the image you have". If you have pain that responds to a moderate dose of tramadol - then that is the appropriate way of managing it. If tramadol does nothing and a bit more pred does - then pred is the way to go.

[Broomser in reply to PMRpro]

Hi PMRpro. Tramadol (moderate dose) definately works very well for me. I think this the way ahead. Your guidance has given me some adaditional confidence and I am so glad of that, thank you very much. I will take your advice re pred tapering. I am excited at the prospect of better days ahead.

[piglette]

As PMRPro says it does not sound like GCA if Tramadol works so well. Of course I suppose it could be both fibro and PMR/GCA, but hopefully not.

[Broomser in reply to piglette]

I hope upon hope that I am dealing with fibro alone. My GP did say that the GCA diagnosis seemed "a bit left field". I cant be too critical as it was better to look at the worst case scenario and take no chances with my eyesight. My research indicated that Pred was not generally considered appropriate for controlling fibro (side effects without the benefit). Tramadol is recommended in controlling fibro ((along with other lifestyle measures). I was so pleased that PMRpro underlined his, it gave me such a lift.

[piglette in reply to Broomser]

Basically steroids do not help fibro at all, as it is a neurological problem not inflammatory. A friend takes Tramadol for fibro. Someone made a very good film about the effects of fibro on her life. It really showed the good days and not so good days.

[Wallysma in reply to Broomser]

hi...I am sorry you are dealing with all of this. I hope you get answers soon and more important relief. I've had fibromyalgia since early '90's. I have been on tramadol since. It is the only thing that has worked for me and no side effects. I have been on extended release 300 mg for quite some time and it works so much better than the regular form. I was diagnosed with PMR this past May and it has been a nightmare. Pred doesn't not help fibro as they say hear. It does make things difficult. I too am having back pain. Muscles on both sides...not spine but soft tissue. Ok except if I stand to do something. So as my doc explained girdle pain...back muscles, hips area, thighs. Then the shoulders, arms. I have found that the inflammation increase has made my fibro and OA worse on some level....so in the beginning I had worse flares with no help from pred. It took me a long time to get pred dosing right...I yo-yo'd a lot. Now in process of trying to reduce. Back spasms are the biggest problem...and fatigue. I have no clue if any of this helps...but when I saw you had fibro and back pain and PMR? on pred and tramadol I had to let you know what I was dealing with.

I hope you get relief soon and find your answers, hang in and take good care.

[Broomser in reply to Wallysma]

Thanks for you post, it is good to share. 20 years with fibro and Tramadol, that's crazy bad for you, and now PMR on top, ouch. Everyone struggles with these horrible illnesses, and with trying to make the best choices regarding treatment / meds etc. I wish you the best.

[Wallysma]

Thank you that is kind of you. Yes.it is crazy. This is the worst of my particular set! I hope things get better for you. Take good care. Be well.

[gaqke10]

Be sure to have your thyroid checked, too. Hypothyroidism can cause the symptoms you were having. It's another autoimmune disease, and if you have one autoimmune disease you are more likely than the average person to develop another one.

[Broomser in reply to gaqke10]

Yes, I will get Thyroid checked, thank you for the heads up.