GCA and PMR

[grace_888]

I have been on prednisone for a year , started on 50 Mg , had two flares and am now on 12.5 using the very slow method .

I have never seen a rheumy or had a protein test . Only esr and am not privy to the results without a Dr visit . I feel very much on my own as it comes down to " how you feel " which is really difficult to gauge sometimes .

I was having blood work 2 times a month to try and monitor the inflammation but was told it wasn't necessary . I didn't want to lower my steroid dose if the numbers were rising .

I have positive GCA test results and am told I also have PMR . I have pain between my shoulder blades every morning on rising and it eases off though the day . I limit my activities and stop when I'm tired .

My question is , should I push for test results and a protein test ,which I read is more reliable or just carry on my own ?

I keep a weekly account of my prendisone and would like to add my inflammation reading to judge when the numbers level off or is this not a practical exercise .

I am 78 and have glaucoma ( have several laser surgeries to lower pressure ) because of the prednisone .

I have learned so much through this terrific site and am so thankful to all those who contribute . Also have the great book on GCA and PMR by Kate Gilbert ( got from Amazon ) . I'm in Canada .

[piglette]

I ask for printout of my blood test results every time. I even get a cheap thrill waiting for them, sad and lonely person that I am. I cannot see why you should not have them. I just have ESR and CRP tested and organise them myself every three months now. If you have GCA or have problems with your PMR you should see a rheumie otherwise you can just see your primary doctor. After a year if you feel OK your blood tests are not sacrisanct, just because they may be raised and you feel OK should not stop you reducing. They can be raised if you get a cold for example.

I keep a spreadsheet of my daily pred dose and a colour on how I feel, green good, red bad. I told you I was sad and lonely!

There is a Canadian discussion board at

pub32.bravenet.com/forum/st...

[grace_888 in reply to piglette]

Thank you piglet for your prompt reply . That was very helpful .

I did ask for a printout but it only had dates I was there and no numbers , like they are a big secret .

I like the idea of a spreadsheet . Thanks for that . I believe knowledge is power and helps give one a sense of some control .

Thanks for the discussion board . I will check it out .

[piglette in reply to grace_888]

They will have facilities to print out the info, but as you say they seem to want to keep it secret. I had a fight with the receptionist recently when I asked for a copy of a referral letter to a rheumatologist. She said we don't normally do that. She did in the end and there were two errors in the letter! I hate to think what my medical records are like, as he does not listen properly.

[Doralouise77 in reply to piglette]

Piglette FYI, that Canadian board is not very active at all, seems enough people read the posts but replies are almost non-existent, I wonder why? It would be nice to be in a Canadian group as well.

Cheers

[piglette in reply to Doralouise77]

I suppose it is a matter of getting people to know about it and to try and get people involved, perhaps as a group. I suppose these things take time on the other hand.

[HeronNS in reply to Doralouise77]

If it's the one I'm thinking of I tried replying a couple of times, but never got a response - checked a number of times over several weeks. After a while you give up and don't check any more. Sort of self-defeating.

[Doralouise77 in reply to HeronNS]

Yes HeronNS, exactly, must be the same one - PMR/GCA - Canada - there's no action at all.....you do know of the Facebook support group for GCA? It's not too active either but there's some good info and conversation exchanged, it's fairly new and a small number of people so we have got to know each other

facebook.com/groups/1727578...

Cheers

[HeronNS in reply to Doralouise77]

I don't have GCA. Signed up to a PMR support group on FB but don't seem to get notifications, or at least so seldom it barely registers. I believe the person who set it up lives in New Brunswick.

facebook.com/PolymyalgiaRhe...

[Doralouise77 in reply to HeronNS]

Thanks HeronNS, I'll take a look. I belong to a very active group with global participation, lots of fun and not always PMR based, everyone posts about their stresses, their good times and bad...it's a very welcoming group...if you want to take a look:

facebook.com/groups/2324290...

Cheers