Does anyone have GCA/PMR
Posted , 3 users are following.
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
denise76179 Jersey_Royal
Posted
Jersey_Royal denise76179
Posted
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 Jersey_Royal
Posted
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 EileenH
Posted
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 Jersey_Royal
Posted
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 Jersey_Royal
Posted