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Does anyone have GCA/PMR

Posted , 3 users are following.

Jersey_Royal
Jersey_Royal

I was diagnosed with GCA November 2012, I am now down to 5 mg steroids a day, which I have been on for a month.

and tomorrow decided to go down to 4.  I feel fine, and don't get

hardly any headaches, I hope to be off steroids early next year (thats what my Dr said) which would be great,  I have regular blood tests and they are OK,  The only symptom I have at the moment, is back pain,. I am seeing a chiropractor.  I don;t know if the back pain, and pain in butt is either caused by coming 

down on steroids too quickly, or if I have genuine back problems  I am 71

and would say very active, although I have given myself this week off.

for no excercise to see if that improves my back,

 But has anyone with GCA been fully recovered after

about 2 years?  

 

0 likes, 6 replies

6 Replies

  • denise76179
    denise76179 Jersey_Royal

    Posted

    Yes my Mum was cleared after about 2 years, however she then developed AF  about 6 months later and we assume this was a side effect of the GCA and probably because she didn't get it diagonised and on steroids for about 2 - 3 months. We had never heard of GCA at that stage so with the classic headaches and neck & jaw pain we as in both us her family and her DR were imagining all sorts of heart problems therefore the delay.  Seems 2 years it can wear outin that time  for both pmr & gca
    • Jersey_Royal
      Jersey_Royal denise76179

      Posted

      Thank you Denise,

      I'm not sure what AF is?

      and when did your mum know that her GCA had gone? Did all symptoms

      dissapear. 

      Mine wasn't discovered for 2 to 3 months, until I started to get blurred vision & jaw pain, so was put immediately on 60mlgms a day

       

  • EileenH
    EileenH Jersey_Royal

    Posted

    On another forum we have had one lady in her 50s who got through the reduction of pred in 2 years - other than that I think all the GCA people have taken longer. It is amazing how many doctors say "2 years" and don't have a clue! It has to be admitted though that most people on forums tend to be the people who have problems so possibly would take longer. I suspect that if the GCA is caught early and hit hard then the inflammation is stopped in its tracks and the giant cells that give it its name are killed off. PMR is the same - but not, and it seems to often take longer to go away.

    Is your back pain in the lower back? Ask your chiropracter if it could be myofascial pain syndrome or a problem with the piriformis muscle - both of those can cause a pain in the butt!

    • Jersey_Royal
      Jersey_Royal EileenH

      Posted

      Thank you Eileen, your reply was really helpful,as is this forum.

      I wasn 't diagnosed for 2 - 3 months, until I started to get 

      blurred vision, then I  was immediately put on 60 Mgms a day.

      Denise told me that her mother developed AF 6 months after coming off the pred after her GCA being clear after about 2 years.

      but I don't know what AF is?  

      I am at the chiropractor tomorrow so will ask her those questions.

      I guess the only real test for reducing pred is the blood test, and your body

      we have no rheumatologist here or consuk

      ltant, but my Dr is very good.

    • EileenH
      EileenH Jersey_Royal

      Posted

      AF is atrial fibrillation - when the upper chambers of the heart beat too fast to be effective. 

      The blood test is not necessarily a guide for reducing pred - in some cases it isn't raised anyway and in others it may fall and remain low even though there are symptoms. The only real test is to reduce in VERY small steps and see if you remain OK. If you reduce in larger steps you may have pain that is similar to the PMR but caused by your body adjusting to the new lower dose. It takes me a month to reduce by 1mg - I can't cut the tablets I use so 1/2mg is not an option and I take the new dose for one day then the old for a few days and keep redcing the number of days of old dose between new doses. It's worked very well so far and I am almost down to 3mg/day - having never managed below 9mg before without pain.

  • denise76179
    denise76179 Jersey_Royal

    Posted

    Atrial fibrillation  AF .  All bloods were back to normal and pain gone when she was taken slowly off prednisone.  That was how she knew GCA was over
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