Polymyalgia rheumatica

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

@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.

Liked by Dee

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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.

Liked by Dee

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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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@johnbishop

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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John, when I came out of the hospital on 8/13/18, I was put on 7 mg. Today I am on 5 mg and next week will drop to 4. I will continue to drop by 1 mg every 2 weeks. I trust my journey with my healer, massage therapist, chiropractor, food plan and breathing exercises. My great concern is my bones. Not sure, but I would like to hope that when off prednisone , we can stop the bones from getting worse. Has anyone experienced that?

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@rearea1

John, when I came out of the hospital on 8/13/18, I was put on 7 mg. Today I am on 5 mg and next week will drop to 4. I will continue to drop by 1 mg every 2 weeks. I trust my journey with my healer, massage therapist, chiropractor, food plan and breathing exercises. My great concern is my bones. Not sure, but I would like to hope that when off prednisone , we can stop the bones from getting worse. Has anyone experienced that?

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Hi @rearea1, you are ahead of the game so to speak. I wasn't very informed during my first occurrence of PMR did not know about steroid induced osteoporosis or I think I could have done some things to help reduce the chances including more weight bearing exercises, calcium and vitamin D supplements, and watching the weight gain. It also makes it worse if you smoke or drink but I've never smoked and didn't use alcohol much then.

Osteoporosis and long-term prednisone: What is the risk?
https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/expert-answers/osteoporosis-prednisone/faq-20057843

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@jayflo

Does anyone have sensitive teeth, thickening of the tissues inside the cheeks, and tightness around the TMJ’s as a side effect of prednisone? Dr. says there is no oral thrush. I was diagnosed with PMR 3 mos ago and been on prednisone (20-40mg) along with methotrexate. Curious to know if my mouth issues are related to PMR, a prednisone reaction, or an entirely different condition?

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Hello @jayflo, welcome to Connect. There is another active discussion for polymyalgia rheumatica with the same name as your new discussion post where your post might receive better visibility. I'm tagging our moderator @kanaazpereira to see if she can move your post to the discussion here:

Groups > Autoimmune Diseases > Polymyalgia rheumatica
https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/

I have no medical training or background but I do have PMR that is currently in remission. I have not heard of side effects you mentioned being associated with prednisone. Here is a fairly inclusive list of prednisone's side effects:

https://www.drugs.com/sfx/prednisone-side-effects.html

Also, Mayo Clinic has some information here on TMJ disorders that may be helpful. I've read that prednisone is sometimes used to treat TMJ when other treatments do not work.
https://www.mayoclinic.org/diseases-conditions/tmj/symptoms-causes/syc-20350941

John

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Does anyone have sensitive teeth, thickening of the tissues inside the cheeks, and tightness around the TMJ’s as a side effect of prednisone? Dr. says there is no oral thrush. I was diagnosed with PMR 3 mos ago and been on prednisone (20-40mg) along with methotrexate. Curious to know if my mouth issues are related to PMR, a prednisone reaction, or an entirely different condition?

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@jayflo

Does anyone have sensitive teeth, thickening of the tissues inside the cheeks, and tightness around the TMJ’s as a side effect of prednisone? Dr. says there is no oral thrush. I was diagnosed with PMR 3 mos ago and been on prednisone (20-40mg) along with methotrexate. Curious to know if my mouth issues are related to PMR, a prednisone reaction, or an entirely different condition?

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Hello @jayflo. As @johnbishop mentioned, I moved your discussion and combined it with an existing discussing on polymyalgia rheumatica. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new location of your discussion and so that you can read through the many posts by other members.

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@rearea1

John, when I came out of the hospital on 8/13/18, I was put on 7 mg. Today I am on 5 mg and next week will drop to 4. I will continue to drop by 1 mg every 2 weeks. I trust my journey with my healer, massage therapist, chiropractor, food plan and breathing exercises. My great concern is my bones. Not sure, but I would like to hope that when off prednisone , we can stop the bones from getting worse. Has anyone experienced that?

Jump to this post

@rearea1 – From Tinkerbell – I am just off 1 1/2 years of Prednisone. Hopefully the calcium and vitamin D supplements will help with your bones. Also, I walked every other day 2-3 miles. I don’t know if you are well enough to walk on a regular basis. I will be having a Dexa scan in a few weeks. I had one just before I was diagnosed with Giant Cell Arteritis. If you have any problems with your taper, you may want to slow it down to 1/2 mg every 2 weeks. Good Luck

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@jayflo

Does anyone have sensitive teeth, thickening of the tissues inside the cheeks, and tightness around the TMJ’s as a side effect of prednisone? Dr. says there is no oral thrush. I was diagnosed with PMR 3 mos ago and been on prednisone (20-40mg) along with methotrexate. Curious to know if my mouth issues are related to PMR, a prednisone reaction, or an entirely different condition?

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My teeth have become very sensitive to cold and I was wondering the same thing. Currently down to 17.5 prednisone from 60 per day, TMJ pain has gone away, probably because of Prednisone. I think that was related to giant cell arteritis.

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@rearea1

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, just read your note above and wonder what are the measurements of the drink incl pineapple, spinach, etc that you make each day. I’ve just been diagnosed with PMR and it’s a very confusing disease!! Am also on prednisone, but having a lot of pain!! Good luck to you.

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Barb, I feel your pain. It’s not a pleasant journey. I just want to again mention that you’ll want to alter your entire diet to eliminate foods that cause inflammation. Even something such as a starch food..when digested, starch turns to sugar..and sugar is the first food to get rid of. One night I ate 1/2 sweet potato and the next morning I could not move. It’s that fast and that important.
Here is the anti-inflammation drink. In a blender put:
1/2 C coconut water
1 1/2 C fresh pineapple
1/2 inch freshly grated ginger
Handful of spinach
1tsp ground Termic
Dash (or less for me) cayenne pepper
1/2 ice cubes
Blend…..

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@rearea1

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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A little update and question: as I mentioned above, I did faint & fall back in August. I hurt my back and had it treated by chiropractor and massage therapist. My inflammation levels went way down when working with a healer.
Now my mid back muscles (between waist and shoulder blades) and extending around to sides and ribs, are tight as a drum and go into spasms. Getting in and out of bed is difficult..as is the simple act of turning over in bed. I’ve been cutting back gradually from 7 mg Prednisone and now are on 4. Could the reduction in medication be the cause of this new muscle pain? Has anyone else experienced this?

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