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PMR AND RA

Posted , 9 users are following.

Bethune
Bethune

I have had PMR and RA for 5+ years and have been up and down on prednisone 20-5 mg, and methotrexate, Aravia, Actemra , and Cimzia.   I am very active, playing sports daily, but have PMR muscle pain in my rear, and neck and have developed sclerotic tendons in my hands.  I feel Im gradually getting worse as I have developed osteoporosis, and pre-diabetes, side effects of long term prednisone.  I'm going to try the super slow method of reducing prednisone.  It is helpful to read how slowly some of you have to go.  My Doc recommends a faster protocol but it is not working.  I am now also starting Cimzia.  Anyone on that?

0 likes, 23 replies

23 Replies

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  • Blockhead
    Blockhead Bethune

    Posted

    Sounds like you really need off the pred due to onset of side effects. My word 5 yrs.!

    I was hoping to beat this PMR in 6 mo.'s or less. This is my goal.

    Try the . Its holistic medicine so your Dr. More than likely wont recommend it. 

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    • EileenH
      EileenH Blockhead

      Posted

      The underlying autoimmune condition that causes the symptoms we call PMR lasts between 2 and 6 years for something like 75% of patients. A few are able to get off pred in under a year but are at a high risk of relapse. The rest of us take even longer. I have had PMR for 13 years and have been on pred for 8 of them. Anyone who gets off pred in 6 months very probably didn't have PMR in the sense we talk about it on this forum - PMR is just the name given to a set of symptom and there are differing causes.

      You can't "beat" PMR - you have to learn to live with it and wait patiently for it to go into remission, a process that no-one has found any way of speeding up yet. When you accept that you are able to devote all that energy you wasted fighting it to living well with PMR by working around it - which is perfectly possible.  Google gorilla in the house by Batsgirl - an allegory about living with chronic illness.

  • EileenH
    EileenH Bethune

    Posted

    I doubt anyone on here with just PMR is on Cimzia, it is an anti-TNFalpha drug which are specifically warned against and not recommended in PMR and GCA. 

    Since you mention the pain being worse at night, are they sure it is PMR you have? If Cimzia works for you that may be because it is ankylosing spondylitis which can appear very similarly to PMR but the night time pain tends to be earlier, around 2am or so rather than 4-5am.

    The pain in your buttocks may be due to piriformis syndrome or, more likely if you also have neck pain, myofascial pain sydrome. That is better treated in a more targeted manner - either with steroid injections or manual mobilisation techniques by a sports physiotherapist or therapeutic massage therapist.

  • susan29426
    susan29426 Bethune

    Posted

    Thanks for answering the question I hadn't asked yet - why did you get off Actemra. (I've had my first infusion and am very hopeful,since I was able to drop from 15 mg prednisone to 12.5 without increased discomfort. On the dead slow method, I couldn't get to 13.5 without a big flare.) Regarding the itching - I have severe itching of my lower extremities which doesn't respond at all to scratching (pre-Actemra, while on prednisone). The doctors look at me blankly, like they've never heard of it. I've found that aloe applied topically eases this, sometimes I need to do it twice, but it works. Itching happens only at night for some reason,

    • Bethune
      Bethune susan29426

      Posted

      My itching was much worse at night, too.  Its mostly gone away since off Actemra.  I also have atypical RA which is why the Cimzia has been prescribed.  Both my presentations of PMR and RA are atypical, as functionally, I do very well.  Full days with  high intensity sports 5-7x a week. But the muscle and or joint pain seems to be totally dependent on my prednisone.  Was off altogether for 9 months, and then on 5 or less for another year or so.  Then flares have me back up to 15 and STILL symptomatic.  Going to try the super slow method after reading g this forum.  Thanks everybody for recommending that!
    • mimi1950
      mimi1950 susan29426

      Posted

      I have bad itching on lower extremities, too, always in a different place.. I just take pred and a BP medication ( lorasartan), so it must be a side effect of one or the other for me. Although, to come to think of it, I had itching in one arm for years, the dermatologist told me it was from exposure to the sun, an allergy of some sort but nothing he prescribed took the itching away. . Then I read that it could have been due to a pinched nerve ..so I guess itching can be caused by many things, like nerve damage in diabetis ..it is a royal nuisance, I think I prefer pain to itching!

      I use lidocaine patches and ice packs to ease the almost nightly itching but before I discovered this, I used to wake up with bleeding scratches on my body that I unconsciously scratched during sleep.

    • Bethune
      Bethune mimi1950

      Posted

      Yikes!  That sounds rough! Glad the lidocaine helps
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