What do you think?

[kulina]

I've had PMR for since March 2016. I've reduced my Pred gradually but I've never been pain free until October 2019. The whole month I felt great and was on 4 mg Pred. In November as I was trying the slow reduction to 3.5 mg I started getting stiff and my left wrist hurt and my right foot hurt/swelled up. Since my rheumy didn't really listen to my concerns I've switched to another one. Since January 2nd the new rheumy has increased my dose to 5 mg and I can't say that I feel better. My wrist and foot still hurt. I wish she increased it to 4 mg since it was so hard and took so long to reduce but she's concerned with adrenal crisis and wants me to see an endocrinologist. When my right wrist hurt I asked for a Cortisone injection which worked great. She said adrenal crisis is very dangerous and it's possible my adrenals will never work again. I just don't know what to think. I don't want to take pred for the rest of my life and I don't think increasing has helped. I will be seeing her again in 2 weeks. BTW, ALL my test came back normal which hasn't happened in 4 years. Does this sound like something you have experienced and if you did how did you resolve the localized pain with normal test results. Thank you for all your help!

[SheffieldJane]

I was diagnosed at the same time as you and I also feel rather stuck at 4 mgs. My most recent Synacthen Test showed that my Adrenal Glands have the capability of functioning normally. However it may take a year or more of zero Pred for me to actually feel normal. I was all set to try and reduce by 0.5 mgs but I developed a painful sinus infection that is being treated with Amoxicillin. This has set me back as I have some PMR pain and stiffness. The Mayo Clinic, sponsored research, showed that the median duration for PMR is 5.9 years. People who come off Pred early often relapse and have to start again. It also showed that serious side effects from Pred are not problematic on PMR doses ( apart from a rise in Cataract diagnosis). Nobody has ever said to me that I may need to take Pred or Hydrocortisone forever. I have seen an Endocrinologist who was confident that my Adrenal function would normalise in time, I have it in writing. The optimum stage to have a Synacthen Test is probably 3 mgs dose. It is a shame that your doctor has worried you like this. It is by no means an inevitable consequence for us.

As we often repeat on here, blood test results do not tell the whole story with regard to PMR pain and stiffness. I would keep on as you have been, reducing by 0.5 mgs when you feel the time is right. That is my loose plan. Your wrist pain may be caused by one of the muscular skeletal problems that trail PMR. Has it been X Rayed? It would be good if your doctor could use her time identifying this problem while you await an Endocrinologist appointment.

[kulina in reply to SheffieldJane]

Thank you for your reply. It made me feel better because I was never concerned about my adrenal function. I had some fatigue while reducing but no other major symptoms. Yes, my wrist was x-rayed and the bones are fine, no arthritis. It was concluded as tendinitis. I wish she could identify the issue, I just started seeing her because she was so highly rated. Hope she doesn't disappoint me.

[DorsetLady PMRGCAuk volunteer]

If you pains didn’t decrease with the additional Pred, then either is not enough Pred (if it’s PMR) or it’s not PMR causing the pain.

Why the worry about adrenals - are you showing an signs of adrenal crisis? Extreme fatigue, lightheadedness, nausea?

If your tests came back normal, then that shows the Pred is keeping the PMR inflammation under control - which could be another indicator that your pains are not PMR related.

[kulina in reply to DorsetLady]

Thank you for your reply DorsetLady. No, I never had signs of adrenal crisis, some fatigue while reducing but that went away. Your answers make me feel better because I learn a lot from your comments.

[PMRpro Ambassador]

I do wonder why they adopt one of two extremes - when a wait and see approach would be far more appropriate. It seems to be a day of dramatisation - monitoring and a synacthen test are called for. And the right dose of pred.

[kulina in reply to PMRpro]

Thank you so much! Yes, extremes it is! This is a new doctor and she also says that 2 years is the average for PMR. They all say the same thing!! We all know that isn't true so I will continue on my path using the knowledge I get from you here and hopefully she will work with me. I will get the synacthen test done too.

[PMRpro Ambassador in reply to kulina]

Give her the Matteson paper to read:

medpagetoday.org/rheumatolo...

[PMRpro Ambassador]

I'm not sure that this represents two different "truths" - there is no way to know whether the patients Matteson reports as having difficulty getting off pred are struggling because of PMR returning at lower doses or poor adrenal function. I have always said that - but either way, they need pred to function well.

[Bignorhill]

I had limited pain when I was on doses over 12mg of Prednisolone but as I came down I experienced pain but decided instead of having pain and possible side effects I would reduce to zero. Been at zero since Christmas day, yes I have pain in shoulders and hips but have been given Naproxen to take which I just take occassionally ans seems to reduce the pain to some extent. PMR gives me grief in bed but movement during the day reduces the impact.

I start a natural treatment path next week and have been on a modified diet since last September to avoid as much as possible dairy, gluten and refined sugars. I am told my issue is my cells not functioning properly due to an imbalance in Sodium (too much) and not enough Magnesium and Potassium. In addition the pH level in my gut is too acidic.

While I was on Prednisolone I kept getting pain in my lower left arm and random other pains but this has stopped now I am off the Prednisolone.

[kulina]

Very informative article. Thank you!