How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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@rogernj67

Since I take my largest dose, 10mg , in the morning and 5mg at night I was wondering what people ate in the morning that is substantial enough for the prednisone and your stomach. I was just eating 3 peanut butter sandwiches but I see everywhere that wheat can be inflammatory and I would like to be on an anti inflammatory diet. Thanks

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Hi Roger @rogernj67, I've never had a stomach issue with prednisone but I normally just take my morning pills with fat free milk and have a banana or some somewhat healthy cereal for breakfast...usually a half to a cups worth with milk. In the past I used to make breakfast smoothies with kale, spinach and other goodies that would generally get me through until lunch time. I also did some juicing for awhile but it turned out to be a little more work than I wanted to do. There is a discussion that may be helpful here:

Juicing - Why would I want to try it?
-- https://connect.mayoclinic.org/discussion/juicing-why-would-i-want-to-try-it/

There are a lot of smoothie recipes around that are pretty tasty, healthy and filling for breakfast. Also, some specifically for anti -inflammatory diets.

John

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Thanks, John. I don’t feel like working too hard after getting up, either. Especially since the arrival of the PMR.

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@rogernj67

Thanks, John. I don’t feel like working too hard after getting up, either. Especially since the arrival of the PMR.

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I was wondering why my ESR was 6 when I was diagnosed last month. My CRP was high, 18, but it seems like from everything I read people start out with a high ESR also.

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Hi @rogernj67 that's a good question. From what I've read the CRP is a better indicator than the ESR test. I would probably ask my rheumatologist to get to see what they say. There is some info out there on the tests that point to the CRP value as the main one.

NIH - Erythrocyte sedimentation rate and C-reactive protein
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653962/

Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment
-- https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment

My last test in January was SED rate - 1MM, CRP - less than 3.0 MG/L and I stopped taking prednisone in February.

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That is great, John. So that is a long time now that you have been off the drug and in remission. Do you feel pretty much pain free? Did you make it through this ordeal without a major side effect from the Prednisone? Hope so. That would be encouraging.

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@rogernj67

That is great, John. So that is a long time now that you have been off the drug and in remission. Do you feel pretty much pain free? Did you make it through this ordeal without a major side effect from the Prednisone? Hope so. That would be encouraging.

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Hi Roger, I have a few aches but nothing that bad now that the PMR is in remission. The two occurrences and the time on prednisone I think contributed to my osteoporosis and thin bones. I'm supposed to take calcium but that is a major constipation factor for me so I try to eat healthier with more broccoli and other veggies that are a good source of calcium. For awhile I was taking a collagen supplement every day but it had a similar effect as the calcium so it's back to focusing on sources of calcium which I guess is better in the long run.

The first round of PMR my major side effect was weight gain...probably about 40 to 50 pounds. The second time around since I knew it would be a problem I focused on diet and exercise and was able to keep the weight gain to less than 5 pounds but it was an up and down ride.

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Sounds good, John! Happy to hear that, except, of course, for the osteoporosis. Weight gain wouldn’t really bother me too much as I am thin. And I am taking 1200mg calcium and D. But interestingly I am having constipation problems now. And I never had that before. So I guess it is the form of calcium I am taking. I know there are different types of calcium. I do love sardines and they are loaded with calcium. I sure hope every day is a good day for you!

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@rogernj67

Sounds good, John! Happy to hear that, except, of course, for the osteoporosis. Weight gain wouldn’t really bother me too much as I am thin. And I am taking 1200mg calcium and D. But interestingly I am having constipation problems now. And I never had that before. So I guess it is the form of calcium I am taking. I know there are different types of calcium. I do love sardines and they are loaded with calcium. I sure hope every day is a good day for you!

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Thanks Roger! You Too.

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@barbararene

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn't get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it's hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don't want to take the medication, but find that I can't move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene'

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My PMR began in the summer of 2017 as I was under stress when my mom passed in the spring and my husband was in and out of the hospital. Like others, mine started with stiff neck, moved to shoulders and hips. I diagnosed myself and then met with my GP. She measured inflammation level @ 49%. She eliminated other possibilities and soon I was taking the awful drug, Prednisone at 15 mg. Had all the usual side affect, and now have many more. A few months later my husband passed away and my health ran far downhill. In February 2018 And with the aid of an Eastern Medical doctor, I took some control by changing diet..no dairy, no gluten, no sugar, no alcohol, no fatty or fried foods. I eat protein, (good quality chicken or fish), vegetables and fruit. I have steel oats and eggs in AM. I take good supplements as well. I gradually reduced from 15 mg Prednisone to 1mg (stay on 15 for 4 weeks and then reduce by one mg every 2 weeks). All was going ok ,but suddenly in mid August 2018 fainted and was omitted to the hospital.
Now I am on a completely new path. Out of hospital I increased to 7 MG Prednisone ( the doctor wanted more and I refused). I am on the same food plan but now increasing anti-inflammation foods (fresh pineapple, spinach, turmeric, ginger- blended with coconut water each day). Here is the most important- 3 weeks ago I began with a healer. 6 weeks ago my inflammation rate was 39%. Just this week it measured 6%. Think about what this healer Is doing for me. After just 2 sessions and doing my correct breathing every day..39 to 6. My journey with him included learning how to breath.,learning I was sick because of all the “stuff” such as fear, hate, control, resentment, anger, inability to let love in and out..and naturally a high level of grief..long term crap that gets stuck in our bodies..not allowing room for good cells to generate. I am so happy that I am on my way to full recovery. I also see a medical massage therapist and a chiropractor. The prednisone is now killing my bones.. was told I need hip replacement. Not sure if I do or not, but I am sticking with my healer as I can walk and move without pain.

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Hi @rearea1, welcome to Connect. Thank you for sharing your story. I also have PMR but it is currently in remission. I've had two occurrences of it 6 years apart. It recently went into remission last February. I think you hit the nail on the head with diet. I'm probably not as good at it as you have been but I've made some definite changes. I started after reading how cellular nutrition helped Dr Terry Wahls get rid of the symptoms of her MS. I do believe that nutrition plays a major role in autoimmune diseases. It's great to hear you are doing so well.

Are you still on prednisone?

John

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