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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

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  • kathy67492
    kathy67492 Bethune

    Posted

    I am sorry the biologics haven't worked, and then having the reaction to the prednisone! I think it may be a good idea to try everything since you also have the RA, pre-diabetes, etc. hope you can continue the sports...that is a good "goal" to have and a great distraction from whatever ails you. I too play golf, tennis, yoga and it really distracts me...plus, when you engage in sports at our age you are surrounded by the "walking wounded"😊 Continue the search for relief💕

    • Bethune
      Bethune kathy67492

      Posted

      Good to hear someone else is very active.  I think it often makes doctors minimize my symptoms.   In fact I feel physically best when on the tennis court or soccer field. 

      Has the super slow method worked for you?

  • kathy67492
    kathy67492 Bethune

    Posted

    I have had PMR For 3-1/2 years. The DSNS method really worked for me, 1/2m at a time...but I could never get below 7-1/2m and that was shaky. The Actemra infusions have been remarkable...holding my breath. I know the weirdness of "looking fine" and having to limit your activities.  The last year I have pretty much been "a day on, a day off" with activities like tennis and golf. Now I can have one activity a day, then some rest. Also, because of the Actemra, if I overdo it and start to flare I can recover in one day! It used to take me 2 weeks to recover. I believe Actemra will become more widely available in the nit-to-distant future...but everything has ramifications...we will see.

    Keep trying whatever you are comfortable with😊

     

    • mimi1950
      mimi1950 Bethune

      Posted

      Bethune, I think " infusions " in British English means injections...I made that same mistake...I thought infusion was like a tea and couldn't understand how everyone was drinking Methotrexate in a tea ..😂😂

    • Bethune
      Bethune mimi1950

      Posted

      In the US infusions usually mean an intravenous delivery,  slowly put in through a needle in your vein, not shots.
    • mimi1950
      mimi1950 Bethune

      Posted

      Hahahaha, sorry Bethune...I'm always mixing up British and American English...master of neither😯.

      So, Actmera is also administered intravenously, like chemotherapy?

    • Bethune
      Bethune mimi1950

      Posted

      It can be, or you can give yourself shots... that's what I did... maybe intravenous is  better.  I didn't bother to try because of the itching, and also tendon  sclerosis in my palms and fingers got worse on Actemra.

    • EileenH
      EileenH mimi1950

      Posted

      Chemotherapy can also be administered orally - it is the type of drug not how it is given.

      "chemotherapy: the treatment of disease by the use of chemical substances, especially the treatment of cancer by cytotoxic and other drugs."

    • mimi1950
      mimi1950 EileenH

      Posted

      Oh... I see, Eileen, kind of like Methotrexate that is administered
    • mimi1950
      mimi1950

      Posted

      Sorry...mtx that is administered orally as well as intravenously and subcutaneously.

  • karenjaninaz
    karenjaninaz Bethune

    Posted

    I feel much better with my Vit D3 blood levels in the mid to higher normal range. This might require taking 5-8,000 units daily . Recent research these levels help mitigate autoimmune symptoms. Testing the blood level, after a few months is the only way to know what is right for you.

    Sensible sun is also a good way but impossible in winter in Northern locales.

    The Vit D from sunlight is stored by the body but supplement D3 requires regular dosing.

  • Bethune
    Bethune

    Posted

    I had to get off Actemra due to a side effect of very itchy hands and feet and worsening iof sclerotic tendons in my hands.  The itching is much better i.e. That I'm off  but PMR symptoms are worse.  I think I'll have to up my prednisone and hope Cimzia will kick in soon.  Cimzia is more for RA though so I don't know if it will work on PMR.  

    I take the big green Vit D pill 1x week, and last test my D level was Ok.

    I remain very active, just don't like the discomfort.  Its worst at night. 

    Keep any and all advice coming.  

    So glad Actemra worked for you!

    • karenjaninaz
      karenjaninaz Bethune

      Posted

      I was told my Blood level was "OK" when it was the lowest normal level:30.5ng/ml US measurements are 30-100. This is a rather wide normal range. I felt terrible at that "normal" reading but when I was over 50 I started to feel great. 50 is considered "optimal" by recent researchers. This is the level that people who get constant sunlight and are healthiest near the Equator. 

      My docs have no problem provided I stay in the normal range. Another guideline is going by how you feel in a dose.

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