PMR without prednisone

Posted , 17 users are following.

Has anyone out there been diagnosed with PMR and found relief without prednisone (or similar steroid)?

2 likes, 15 replies

15 Replies

  • Posted

    NO! I hate preds but there is nothing else that can reduce the pain and symptoms of PMR like preds otherwise believe me I'd be taking / using it. Regards christina 
  • Posted

    I agree with Christina.  You need the prednisone not only for pain but also to help with the inflamation.  However, this raises a point which I meant to raise earlier about pain relief through cannabis or marijuana for medicinal purposes.  I was always dead set against marijuana and would not condone anyone using it.  However, more and more companies are manufacturing it in various forms for cancer patients or those suffering from cronic pain.  The "buzz" if you will is removed and only the medical benefits are left.  A doctor's prescription is needed of course and not all doctors will give you one.  There is a spray apparently for under the tongue and various other forms.  

    I am not suggesting that you use it but it is something that I have read about and at times considered.

    Are there others out there that have views on this?  I may be opening a can of worms!!!!

    • Posted

      Hi linda the problem with the use of cannabis or marijuana in the case of PMR/GCA is that I understand both these substances only offer some degree of pain relieve? The problem with PMR/GCA is that primerarily we need a drug that above all controls inflamation because it is the inflamation that causes the pain. Most of us say that within 4-6 hours of the first dose of preds pain is greatly reduced. That is only because the preds are clamping down and controlling the inflamation. 

      And again even with cannabis and or marijuana, it is not a 1 drug fits all pain relief. There are some pains that the drug proves ineffective at controlling and both the substances contain no anti inflammatory components. However, having said all that wouldn't it just be so great if another medication was developed that caused fewer side effects than preds, not just for PMR/GCA sufferers but for all people prescribed preds. Regards, christina 

    • Posted

      Yes - but the point is the pred relieves inflammation and it is inflammation that is causing the pain.

      I don't know if cannabis would necessarily work - it would possibly work in fibro since that is a form of nerve pain and it is nerve pain that responds to cannabis according to some research. You certainly won't get to use it in the UK!

    • Posted

      Very good point Eileen!  I live in Canada and, not unlike the US, laws are softening particularly when it comes to medicinal use.  

      I guess I felt the signs of the PMR coming back but thought it was just a matter of time before it would go into remission completely.  I was ignorant of the facts and, having now learned so much from you and the others, I realize that fighting the mild pain is ignoring the bigger picture.  There is obviously low lying inflamation and with the recent flare up in my wrists, I now know that I must go back on prednisone (particularly if I want to avoid major problems like blindness).  I was only giving thought to cannabis to help with the joint pain I was experiencing but knowing more now that really isn't a viable consideration.  

      I am happy to say that I was successful in getting an appointment tomorrow with my opthamologist due to a cancellation and I hope that he will assure me that everything is okay for now...until I can get on prednisone again.  

      I may have to wait for an appointment with my rheumy again and, as you say Eileen, I do not have a lot of confidence in her but this time I am prepared to challenge her (nicely, mind you, because she like some others is egotistical).  I am hoping that I can start on a lower dose than I did originally but we shall see.  

      My fear is that I not only have I PMR but that it might now be GCA as well. The day following the flare up with both thumbs, I could feel the "sore spot" and see it between two veins (or possibly between two branches of the same vein).

      We have yet to determine what is causing the weird feeling in my head but I strongly suspect that it is caused as well by PMR and/or GCA.  It is the uncertainty of the disease, the lack of knowledge in the medical profession and the unwillingness of the professionals to listen and realize their limitations due to lack of first-hand experience, that frustrates me!  I am still waiting for a call from the neurologist's office but maybe with the tests that she orders, we can get to the bottom of this.  

      Eileen, you raised a number of valid points in your previous response and I want to go back and re-read them.  My hip which is becoming excruciatingly more painful (getting into and out of the car) will probably need to be addressed soon as well.  I know that I need to strengthen my legs first though (with exercises) in order to support myself after surgery.  I was fearful of having more pain due to PMR but, as you say, surgery appeared to help the lady you knew.

      I would be grateful to hear from anyone out there that has had surgery or knows of someone who has during their journey with PMR.  It could be reassuring or otherwise to hear of your experiences with respect to pain tolerance.  

      Although fearful of what lies ahead, I am determined to take my health into my own hands.  Thanks to everyone in this forum for their personal advice and shared experiences!  

    • Posted

      We have a lot in common with a dual diagnosis likely. I was awaiting hip replacement when PMR and the possibility of GCA showed up. It's so uncomfortable and fearsome to deal with the possibility of both, but especially GCA when surgery is imminent and necessary.

           Hope you will reply. 

           I've been told that, yes, one must discontinue prednisone prior to surgery as it increases risk of infection. And yes, it is likely that it will be harder to manage pain post surgery due to the abnormal increase in inflammation which accompanies all surgery. With luck the side effects will be minimal.

           If you're having surgery on legs -- try to do isometrics and hand weights to strengthen your upper body. You'll want to be stronger if you have been bedbound for awhile as I have. Working on your core (abdomen) may not be so difficult and will pay dividends. 

       

    • Posted

      In the UK at least there are surgeons who will operate while the patient is still taking pred. In fact, they often give extra pred during surgery to help the body cope with the stress of surgery since the adrenal glands aren't producing their own corticosteroid, cortisol.  If you have PMR you NEED to be on pred to manage the inflammation and symptoms to be able to do the rehab. 

      ​There are a few ladies on the forums who HAVE had their hip replacements done while still on various doses of pred - anything up to 10mg that I know of - and who have had successful surgery and good recoveries. They also found they were able to reduce their pred post-op - as of the hip pain was feeding the PMR.

       

      If you are being told you must stop pred for surgery - you need to shop around for another surgeon. 

       

  • Posted

    Hi Pam, I have a problem to take prednisone due to very sensitive stomach and stomach ulcer history. I have tried already couple of times prednisone and had to stop with doctor's permission. I was few months on Zyflamend - antiflamatory supplement based on Turmeric and few weeks on acupuncture and antiflamatory diet (less bread, less coffee, more fruits and veggies) and I felt much, much better in comparison taking nothing or pain killers. In January 2015 I had very stressful month at work and got sick with cold/virus. Also I ran out of Zyflamend. And all my pains came back almost as bad as originally when I got sick in February 2014. I even did not know how Zyflamend help me till I ran out of it.  I read and heard good reviews on acupuncture, I would like to find good doctor to continue.
  • Posted

    I had PMR for 5 years before it was diagnosed and I was given pred. I tried a lot of different things, Pilates, aquaaerobics and Bowen therapy made it liveable with. But I never had a day without pain, I had to change my lifestyle and stop doing a lot of things as a result. The first day I was given 15mg pred I walked downstairs properly and back up without having to resort to hands and knees. It took a few months but it got me to acceptably pain levels. Now on 4mg of pred I have a good quality of life and feel well - it wasn't without hiccups on the way but I wouldn't go back to PMR without pred.
    • Posted

      I should have also added in my post that I eat a good antiinflammatory diet and have, at various times, tried all the omission diets you can think of except strict vegan. So have several people on the forums and they too (re)turned to pred in the end. MrsO says she noticed a difference when she didn't eat her 3 servings of oily fish per week and she also uses turmeric and garlic in cooking. But it didn't replace the pred. 

      I also was able to use the alternative approaches for the first 5 years because the PMR wasn't too bad once I got up and got going. But then it hit me like a ton of bricks and those approaches were impossible. There comes a point where where there is a switch between "can I manage with this pain" and "I can't manage any more". And if it progresses to full blown GCA then you have a rather stark choice anyway: take pred or risk losing your sight, irreversibly, permanently. If the vision in one eye goes, the other usually follows within a few weeks, sometimes even despite very high dose steroids

  • Posted

    My life without prednisone was 80% stagnated because of pain.  I could not turn over in bed.  I could not get out of a car, or get into one, without significant pain and slowness.

    Almost immediately, upon taking the prednisone, I was better.  Not 100% in retrospect,  But at the time it felt like it!  I could sleep without pain.  I can get into and out of cars.  I can get up from the couch without standing there for a few minutes before moving.  I'd say I'm at 75% of "perfect" for my age.

    I walk.  I even do some slow jogging.  Amazing.

    • Posted

      Hello Bob, I did smile when I read your posting about getting up from the couch and having to stand for a few minutes,,, because ditto!!! Even when I focused my mind TO WALK I just couldn't do it! I'm new to PMR just started pred 20mg.

       

  • Posted

    Hi all in this thread!

    I had seen rheumatologist yesterday, and after all these prednisone trying and dropping, he told me yesterday I may have PMR or may not? He suggested trying for 2 weeks Tramadol for pain and physical therapy and letting him know after two weeks how I'm doing? Now I'm totally confused and not sure what I should do? At least I had name for disease! And physical therapy for what if my whole body hurts?! And I think he came to this conclusion because my pain is not 100% symmetrical and my SED rate almost normal! And first time I had a break from pain 8 month ago when I had cortisone injection in hip joint. And later when I tried 15 mg Prednisone. I wish I could take Prednisone to get over with this disease and be back normal person I was. Kind disapointed with rheumatologist...

    • Posted

      I think another rheumy who knows more about PMR is called for. It is generally symmetrical but not entirely so and bloods are normal in 1 in 5 patients with PMR. The biggest clue is its response to moderate pred - and frankly, who cares: if you are pain free with a low dose of pred that should be the first consideration. If it is PMR neither tramadol nor physio will help
  • Posted

    Hi there. My mom is taking Prednisone for 2,5 months it helps a little with information and pain but she got allergic to it. Her gegs got swollen, she has salty taste in her mouth,her stomach hurts and she start having shortage of breath. Her rheumatologist prescribed Actemra but i am not sure if her insurance cover it. One syring is $1000. But this medication is the best for PMR it reduces production of interleukin 6 that causes information. I also want her to try cannabis

    I keep everyone updated on the progress. My mom is 74 she also has high blood pressure and chills and afever of 101f once a day.

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