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Polymyalgia and RA

Posted , 11 users are following.

pam7653
pam7653

I am 65 year old female. I e had PMR for over 5 years. On my 65th birthday I was diagnosed with RA. I’ve been on prednisone for over 5 yrs. I was able to stay under 10 mg the first 4 years but now find it difficult to be under 15 mg. 

My Rhumy wants me to start Embrrl or Humera injections asap. I’ve resisted when I read the side affects. 

I recently found an Integrative/Holistic internist here in the US. He’s treating me with tons of vitamins (I’m drastically low on my Vit. B’s) and CBD oil trying to get me off of prednisone. It’s only been 6 weeks. 

Has anyone had any progress getting off of prednisone?  I can’t take methotrexate or hydroxychloroquine. 

Will Humera or Enbrel get me off of prednisone?  Is it worth it? 

0 likes, 10 replies

10 Replies

  • missmagwumps
    missmagwumps pam7653

    Posted

    Hi Pam - in your experience can you take CBD at the same time as steroids....just curious as I tried it at same time but I had bad headaches and not being sure what was causing it I stopped the CBD temproraily....thanks x

     

  • shirley95254
    shirley95254 pam7653

    Posted

    Hi Pam, I do wish you the best success! getting off. Prednisone . It can be devastating long term. I to am trying to get off it for good. I've also been told methotrexate would be to hard on system. I am really seeking the sort of Dr. You mention . Naturalists here in Michigan. I was in Florida and could find them . You could be very far from me, in Mich. However I've only heard one Dr. In Lansing Mich. Area it is bit far . I do have much pain as I am sure you as well .Do hope alright, I've ask the question of possibly getting phone number Name of Dr.

    From you. Again, very best wishes for reaching some recovery. I am your age , Alone, No support like in Florida. been sick over 4 years also.Not able get back FL. yet My calm heaven on earth spot . SW n . Island peaceful living lol. Been to unwell, treated with different drs. couple yrs almost now .Hard.

    Please excuse my grumpy chatter. Does seem all meds esp.Antibiocs are so hard to take since Prednisone heavy doses. Have you had vision loss. ,, Blurry vision etc.?Just wondering.. Best regards. The Saft PS . sorry rambled on, seems Prednisone does to me. Thanks

  • EileenH
    EileenH pam7653

    Posted

    You probably DIDN'T have PMR but late onset RA which often presents looking like polymyalgia with no sign of joint damage - you can't blame the doctors too much, there is absolutely nothing to differentiate the two until what often happens is that reducing the pred dose is very difficult and eventually joint damage appears. What you describe is typical.of apparent PMR turning into a real RA presentation.

    If you have RA you need a DMARD of some sort to prevent the joint damage that is almost inevitable over time.  You have tried 2 DMARDs so the next stage is probably a biologic and that is what you have been offered. Yes, the potential side effects sound awful but they really are a game changer and many RA patients have had fantastic results on them. Without them you will find the symptoms returning whenever you reduce the pred dose too far and while I'm sure your internist really believes in what they are doing, there is no natural cure for RA. Pred was/is often used at low doses to manage RA but 15mg isn't really a low dose. You will need the biologic to get to a low dose of pred - and then, after so long on pred, you will have to reduce the last 8mg very slowly to allow your adrenal function to return - no other drug will help that, just time and patience. That is the same for everyone. 

    If you are worried about Humira or Enbrel post on the RA forum - there will many who use them happily. Or google The Seated View by Lene Andersen - she developed RA as a child and is confined to a wheelchair with severe joint damage - but I think it was Humira that she credits with saving her life.

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, I am glad that the Patient website was finally available to me again as of recent.  I remember you mentioned that Palindromic Rheumatism could be the cause of the RA factor I have in my system.  I am taking 200 mg of Plaquenil which controls the one sided flares I used to have.  None of these caused joint damage.

      I still have PMR with bilateral discomfort in both shoulders and lower back.  After 4 years I still struggle lowering prednisone from 9 1/2 mg  trying 1/2 mg a month.  I do believe that adrenal insufficiency could be part of the culprit and I will bring it up with my Rheumy.  She has been very understanding with the slow reduction process.

      As always, I am grateful and appreciate your knowledge and advice.  

    • EileenH
      EileenH erika59785

      Posted

      Good to hear from you erika. If you have PR symptoms - do they improve with a bit more pred? Or might it be myofascial pain syndrome do  you think? So difficult to tell the difference sometimes.
    • erika59785
      erika59785 EileenH

      Posted

      Eileen, I have had a very painful PR flare in March.  I could not move my left leg and felt so ill that I had to call the Ambulance to take me to the hospital.  The attending doctor had not heard of PR and my Rheumy could not be reached.  They gave me a morphine injection and 40 mg of prednisone.  I had to stay for the night, and I was fine the next morning.   It lasted 24 hours.  My Rheumy did not really know the cause.  She prescribed 40 mg for me to take immediately when symptoms would arise suddenly and to continue for 3 days.  So far so good ---- no more attacks since then,  just the ongoing PMR symptoms of fatigue and bilateral shoulder pain and back  (muscles) when the prednisone wears off.

      This body of mine is a mystery.  I swear it is genetic stemming from the Vikings.....:-)

       

    • EileenH
      EileenH barbara40602

      Posted

      I'd forgotten she has a book - but just reading her blog really is inspirational - and that is a word I rarely use!

    • pam7653
      pam7653 EileenH

      Posted

      Eileen,

      My greatest worry about starting a biologic is the side effects.  I have a precancerous cyst on my pancreas and have had for the last 4 years or so. They watch it yearly. Causes no issues except a high lipase level that has been as high as 950 to 179 right now. I guess I don’t want this drug activating that issue. Maybe I’m over cautious. 

      I have an MRI on my left hip this week. It is where I have my biggest issue. If I find damage I may be changing my mind on the biologic. 

      I will keep you updated and thank you for your advice. 

    • EileenH
      EileenH pam7653

      Posted

      Fair enough - maybe you need to get your rheumy and your oncologist together? All the best.
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