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Living with PMR

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Guest
Guest

I was diagnosed PMR last Fall.   I was so bad I had to fall out of bed and roll just to get up.  Up untill then, I was a dancer, outdoors person.  Hiker, camper, kayak etcc...   I was on prednisone.  My weight ballooned.  I moved on to Celebrex.  My weight continued to go up.   I chose to go off the meds.  I want to lose weight.  However all I want to do is lay on the couch all day because I am in to much pain to do anything.  Walking is the only relief I have.     Does anybody have any recommendations of Natural remedies I can take?     I have been taking Jameson Body Guard but I still need Alieve to go with it.    Now I am not only in pain, but fat and depressed too.

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  • Anniecurd
    Anniecurd Guest

    Posted

    10 years ago I had a dexa scan and was told that I had osteopenia, no treatment was suggested. I went on pred in August for PMR, and had  another scan 2 weeks ago, this time it was osteoporosis. I'm thin, white, female, I'm not surprised.  I'm not a couch potato and I eat very healthy. I told my rheum I'm not taking the drugs for it, she said fine, we've got other ways to deal with it. 
    • EileenH
      EileenH Anniecurd

      Posted

      Do tell us what she offers - I'm really interested to hear.
    • Juno-Irl-Dub
      Juno-Irl-Dub Anniecurd

      Posted

      Anniecurd, I would also love to know what 'other ways' she is dealing with your OP.  Also, maybe what she suggests is dependent on what exactly you dexa scan results are (ie. how severe your OP is).  . . 
    • Anniecurd
      Anniecurd Juno-Irl-Dub

      Posted

      sorry Juno, I replied to busy mom instead of you. Still getting used to the site. Anyway, my rheum had a preliminary look at the Dexa and said OP. But I have to wait until my next appt to talk to her about it. My friend, who's a nurse did say there was something new for bones that seems not to have a lot of the bad side effects of the other drugs. I'll find out what it is.
    • Anniecurd
      Anniecurd Juno-Irl-Dub

      Posted

      hi Juno, I did some research and the drug is called prolea, it is administered as an injection two times a year. But I don't like the side effects of this one either. 
    • EileenH
      EileenH Anniecurd

      Posted

      Prolia, the substance is called denosumab, is classified as a bisphosphonate except it is what is called a monoclonal antibody, similar to the drugs used for RA which are termed "biologics". It is also used in some cancers. I don't know the relative doses for OP and cancer - often you find that many of the side effects tend to apply for higher doses. However, I do know that in cancer it is given at least every 4 weeks, 13 times a year, while in OP it is usually only given twice a year. That is a big difference. Even at the doses for cancer it was found to be well tolerated with fewer side effects than found with bisphosphonates.

      The data sheets list ALL side effects seen during the clinical trials - and actually they may not all have been due to the drug. Some of them are very rare. But if you looked at the side effects of any drug you probably wouldn't want to take them either - even the ones you happily buy at the chemist to help with the symptoms of a cold!

      Nefret on here has been on Prolia for a couple of years without any problems at all and - if I remember rightly - now has normal bone density.

    • Anhaga
      Anhaga Anniecurd

      Posted

      I've had a recent diagnosis of OP out of the blue and so far have no intention of taking any of the drugs.  They look really risky to me and there certainly are other ways of approaching the problem - namely diet (and supplements) and exercise.  Weight bearing exercise is supposed to be the best, and so are exercises that strengthen general muscle strength and coordination (like tai chi).  No matter what we do, pharmaceuticals or other less dangerous ways, it takes a long time to see results, and the result in either case might just be stopping the deterioration.  One of the tricky things about the drugs is that they do in fact increase bone density as it appears on the scans.  But after a few years one is in greater risk of fracture because the "new" bone is actually more brittle than bone produced normally by the body.
    • Anniecurd
      Anniecurd Anhaga

      Posted

      That is what I have been reading about the drugs. That they can make the risk of fracture more so than not taking it. I think it's because they are not letting the body discard the old bone cells like they're supposed to and so just keep on building up. I'm not sure why this makes the bones more brittle, maybe it's just because the old cells are more brittle.
    • Anhaga
      Anhaga Anniecurd

      Posted

      I don't know if the program will let me say this but there is a website called webmd with loads of great info including, I have just found out, a great list of drugs with comments from many users.  Looked up one of the OP drugs for interest and there were many varied comments.
  • Anniecurd
    Anniecurd Guest

    Posted

    My rheum just got a preliminary look at my scan, and said OP. I have to wait until my next appt on Nov 16 to find out what she suggests. But in the meantime I'm taking extra magnesium and Vit K to help the bones, and trying to cut down on sugar which is supposed to be bad for them. She also wants me to have my heart checked because I had really painful chest pain from the pred, which I only get if I don't take apple cider vinegar. I'm sure it's heartburn. 
    • EileenH
      EileenH Anniecurd

      Posted

      Very likely Annie, Have you tried taking your pred in the middle of a meal or drowning it with plain yoghurt - which worked for a lot of people who were unable to take PPIs (omeprazole and co) which tend to be handed out like sweeties along with pred (and they have plenty of side effects of their own!)
    • Anniecurd
      Anniecurd EileenH

      Posted

      I usually take the prednisone right after breakfast, but I will try it during breakfast and see if it makes a difference.  I have noticed that if I'm in a hurry and eat too fast the heartburn is very bad.
    • EileenH
      EileenH Anniecurd

      Posted

      It was something recommended by a pharmacist originally and makes sense - line your stomach with some food, take the pill into the middle of taht and top it off. So does the hurrying eating - didn't your mum lecture you about that when you were in a hurry to get out and play ;-)
    • lodgerUK_NE
      lodgerUK_NE Anniecurd

      Posted

      I used live yoghurt or probiotic with a teaspoonful of Manuka Honey (UMF).

      I was given this tip by MrsO, we have passed it on to many people and it works.

      I never then had to take a PPI  (ie stomach protection) and with GCa I was on high doses.

    • Anniecurd
      Anniecurd EileenH

      Posted

      Haha, no I wasn't a good eater, she was always trying to get me to eat more. They had to send me to a skinny farm in Bournemouth to put weight on. Also I love yogurt so I'll try he preds with that. I make it with evaporated milk which makes it extra creamy.
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