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PMR, Prednisone, GCA

Posted , 5 users are following.

kathy67492
kathy67492

I am 20 months I to PMR, taking 8 mg daily...have been down to 7 mg but started to flare. Saw my rheumy yesterday, my C-reactive protein test is at 16, same as it was in August (USA testing). He believes it is the temporal Arteritis that is preventing me from tapering lower, but he will let me continue to taper using Eileen's method until next May....then do something else...? Cannot recall if you (Eileen) have GCA also. If I try to taper down from 8 I have a throbbing on the left side of my neck...and occasional shooting pain on the top/side of the left side of my head...lasting about 20 seconds. Does this sound "typical"? Had my eyes tested about a year ago....all good. Thank you.

 

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH kathy67492

    Posted

    To be down to 8mg after 20 months really isn't bad - I know loads of people who would envy you! GCA can last for 5 or 6 years, the 2 years you often hear quoted is a rare bird! Maybe a quarter manage that? Most experienced doctors relax once their patients are down to about 7.5mg - that is similar to the amount of corticosteroid the body produces naturally. 

    What else is he aiming to do? Pred is the tried and tested GCA option - it works. It is possible that by then the results of the toxcilizumab trial will be out and it approved for GCA - but that is a whole new ballgame in terms of cost ($17,000 per year) for the insurances to approve and it has side effects too, some make pred look a real pussycat. 

    I probably have GCA - but far from typical. Those problems don't sound like anything I've heard others complain of. Do you have any neck problems other than that? I had that sort of pain due to shoulder/back muscle problems - years ago a sports masseur sorted them, more recently Bowen therapy helped a lot. 

    • kathy67492
      kathy67492 EileenH

      Posted

      The plan is to let me continue to try tapering thru next May...then he said it might be time to try something else. He mentioned a drug for GCA (probably the tocilizumab..?) that is in trials and not yet approved.

      he knows I am not interested in the methotrexate and he does not push it.

      so do I have to be more alert for eye pain/changes now? He has given me plenty of prednisone for the winter. I wll be in the Bahamas and not real close to fast medical intervention. I can feel the panic! I don't have any other neck problems, but the PMR started in the neck. I thought a recent earache was from my earphones. I don't want to start a taper if it will increase my chances of going blind! Appreciate so much your input Eileen💕

    • EileenH
      EileenH kathy67492

      Posted

      Very possibly - but if you are already down to 8mg it isn't anything to panic about. There is one lady on one of the forums who has been told she'd to use tocilizumab by a Mayo(?) rheumy - but it isn't funded and since it is still off-label use it isn't covered by any of the financial options. So she is faced with paying $17,000 a year herself. 

      I wonder if doctors realise how much money a retiree has to spend? It isn't a problem in Europe - but neither would tocilizumab be an option until it is approved for GCA. 

      The rheumies who wrote the  "Bristol paper" as we call it keep their patients at 10mg for a year - whether they started at 60mg for GCA or 15mg for PMR. Doing so achieves a flare rate of 1 in 5 rather than the 3 in 5 found with other reduction plans. So a winter. or at least part of it, at 8mg doesn't seem out of the ordinary to me.

    • kathy67492
      kathy67492 EileenH

      Posted

      That makes perfect sense...thank you for clarifying that so well!

      Have a Mery Christmas!🎄

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