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Are there any groups for patients with CPPD

Posted , 7 users are following.

escot
escot

I have been diagnosed as having CPPD and whilst I am taking Hydrozychloriquine  this has helped me, and I would like to know if there are any support groups.

Initially I was told that I had PMR but until my new Rheumatoligist arranged a bone scan this then revealed the real problem

0 likes, 6 replies

6 Replies

  • LisaCACO
    LisaCACO escot

    Posted

    First of all, I have no idea the answer to your question. And I'm totally guessing here but you might try asking on the Bone disorders forum-they might be able to help. good luck.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey escot

    Posted

    escot, I'm sorry but I don't quite understand the question as I haven't heard of CPPD.  If you mean COPD, then there is a forum covering this on this site - just put COPD into the 'Search' box to the right of this page.  If, on the other hand, the bone density scan has revealed that you are suffering from osteoporosis, then search for that instead.
  • ptolemy
    ptolemy escot

    Posted

    A friend of mine has just been diagnosed with CPPD (a form of arthritis) and is also taking Hydrozchloriquine. Initially she was wearing all sorts of protection for her hands and legs but the tablets seem to have helped. I have PMR and we sit and talk about getting up off the loo and the problems we have, it could be a comedy programme.
  • jo-anne1
    jo-anne1 escot

    Posted

    Hello escot,

    I have had PMR for 3yrs.  Besides prednisone my Rheumatologist prescribed Hydroxychloroquine as a prednisone sparing drug.  I  have never heard of CPPD or the drug you mentioned.  Curious to hear what the bone scan reveled.

  • ruth07185
    ruth07185 escot

    Posted

    I have CPPD and just came through a 'flare up' last week that all but immobilized me.  I've realized there is a need, at least by me, to have a group and will bring it up with my rhuematologist at my next visit.  I'd just appreciate trading stories.  How long have you had it?  Do you have a particuliar part of your body that's affected?  Mine started with my feet, thought it was tendonitis of the Achilles tendons and had physio for nearly 4 months before my elbow flared and the PT sent me to the rhuematologist where the condition was diagnosed.  Had you had an parathyroid problems before?  I'm just interested in hearing from someone who has also experienced it.
    • joyce09199
      joyce09199 ruth07185

      Posted

      I also have cppd, every flare up I have takes 2 weeks out of my life.

      after seeing all kinds of doc. Finelly I got some answers. I know doc's Thought I was crazy. It's just horrible...

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