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PMR flare brings on GCA symptoms

Posted , 8 users are following.

BACHERP
BACHERP

3 weeks ago I went from 7.5 pred to 15 for an excruciating PMR flare (my first since dx 2.5 yrs ago).  I'd been on 7.5 for at least 6 months. (Another story). Anyway, for the last three weeks I've also had a permanent bilateral temporal headache and mild jaw pain.  Now at 12.5, but happen to have opthalmogy appt. today.  Symptoms even milder today...  Should I tell eye doc?  Do higher pred doses decrease GCA headache?  Thanks!

0 likes, 25 replies

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  • BACHERP
    BACHERP

    Posted

    One last question:

    Are lab results (crp and sed) generally higher with GCA v PMR?  Or the other way around?

    • EileenH
      EileenH BACHERP

      Posted

      Generally you would expect the blood markers to be higher with GCA but it doesn't follow at all and often GCA is missed because the doctor doesn't think it is high enough to be GCA. And about 1 in 5 of all patients with either never have a high level at all.
  • artfingers
    artfingers BACHERP

    Posted

    My understanding from what I have read is a starting dose of 60 mg of pred but read this article from this website:  

    https://patient.info/health/giant-cell-arteritis-leaflet

    Personally, if you are in this kind of emergency situation, I would not want to mess around with loss of eye sight. But I am new to this so I am just going by what I have read on this website and related links found here under GCA here and read up on them? Hopefully, your rheum. will have answers for your today.  Please keep us updated.

  • BACHERP
    BACHERP

    Posted

    Annaba:  the doc did not suggest this, the eye dr was trying to discourage me I think from doing it.  I had asked about a "definitive" test.  Rheumy agreed 2.5 yrs on pred "muddied the water", but agreed with his dx.  She 's starting me on 40, with the caveat that if I feel ANY pain at all, gca or pmr, to go up to 60.  She too was surprised opthal.  didn't prescribe higher pred either, but it was just yesterday and so fortunately I had no eye symptoms (except early in flare some headache feeling in my eye.  Rheumy did notice I had swollen temples, and I had noticed redness on one.

    think I've mentioned all my gca symptoms.   Thank you so much again helpful people.  This site has been a godsend!

    • BACHERP
      BACHERP

      Posted

      Oh, and sweating.  Lots of it.
  • BACHERP
    BACHERP

    Posted

    Just a last thanks to Eileen.  I big help to so many!  Thanks for your history too.
  • BACHERP
    BACHERP

    Posted

    Just thought I'd follow up about what has subsequently occurred.  

    I was on 60 pred for 6 weeks, put on 8 lbs and gained chipmunk cheeks.

    i was fortunate to get into an NIH vasculitis study, had millions of tests, including the temporal artery biopsy, which came out negative. 

    Have gotten back down to 10 pred, lost the cheeks and 8 lbs.  Pain seems to be getting worse in shoulders, but nothing like the flare I had.

    Rheumy has me on so many meds, does anyone think this is too much?

    Prednisone, plaquenil, folic acid, methotrexate, fosamax.

    • Anhaga
      Anhaga BACHERP

      Posted

      Presumably there is a reason for each medication, but it does seem a bit much to be taking pred AND mtx AND plaquenil. Were you not responding well to pred by itself?  Or are the doctors determined to get you off pred, no matter what else they need to put into you?  Is the fosamax necessary for severe osteoporosis or is it just being prescribed as a preventative measure?
    • EileenH
      EileenH BACHERP

      Posted

      Personally from my reading and understanding I can see no good reason for either plaquenil or methotrexate alongside the pred for GCA - there is no good evidence either of them help. The plaquenil is rarely used in most of the world, MTX is used but in the most recent recommendations is said to be something that should only be used in collaboration with the patient since the evidence is poor.

      Look for 2015 Recommendations...   and look at Recommendation 7 in the following link:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      ​If you were not on MTX you wouldn't require the folic acid (it's only a supplement to combat MTX side effects).

      As Anhaga says - is your bone density bad enough to suggest Fosamax is required? Mine has been fine and I only took 4 tablets before stopping it after discussion with my GP who agreed with my decision that it was of dubious provenance. Calcium and vit D have been adequate thus far.

      If pain in the shoulders is returning it suggests that you aren't ready for 10mg just yet and to have got from 60mg to 10mg in 4 (?) months is very fast. Slow down - and be sure this isn't returning inflammation creeping up on you.

    • BACHERP
      BACHERP EileenH

      Posted

      Thank you Anhaga and Eileen.

      I'm glad I returned to this site.

      I'm not exactly sure what Rheumy is up to with all of it, but she has made comments:  yes, she does eventually want to get me totally off pred she has said, and replace it with MTX.

      She has also said that "sometimes PMR morphs into RA."

      So I she may suspect this?  shoulder pain is chronic, but I often get wrist and hand pain, so it could be LORA (late onset RA - thank you Eileen), I'm 57 and this started 3 yrs. ago ...overnight I woke in agony and couldn't raise arms more than a few inches.

      Also, "osteopenia" is a precursor to osteoporosis which I have, but which is also normal for my age. (I think an intern who was there mentioned this.

      Anyway, bc fosamax came in a box - not bottle like the rest - I unintentionally forgot about it, and now I'm debating whether to take it at all.  A friend's mother said, "Don't take that!"  I presumed she had bad side effects with it but didn't follow up as it was just too much info to absorb at that moment.

      Thank you both for your consideration and knowledge!

      Pamela

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