Sharing...: In my continual pursuit to educate... - PMRGCAuk

PMRGCAuk

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PMR2011 profile image
9 Replies

In my continual pursuit to educate myself I have bumped into some good resources. Hope they might help others too, so sharing.

This is a lengthy but thorough article on GCA. You’ll note that many of the studies shared on PMRGCAuk are cited.

urldefense.proofpoint.com/v...

This is a document that might assist when advocating for oneself with docs:

lookaside.fbsbx.com/file/De...

On another note, I made the decision today to start Actemra. After 3 flares and unable to get below 20mg Pred I decided it was time. Hoping it’s a new chapter on this PMR/GCA journey that has lasted 7 years for me so far.

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PMR2011 profile image
PMR2011
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9 Replies
enan-illuc profile image
enan-illuc

PMR2011,

Thank you for the resources. I have used Actemra since June of 2017 and have had no problem. It has helped me taper the Prednisone very slowly without a major Flare (so far). I give myself the shot and it has not been a problem. My Rheumy said Actemra is not a substitute for Prednisone but makes tapering easier and in my limited experience it does. Good luck with your "new chapter" of treatment.

Enan

PMR2011 profile image
PMR2011 in reply toenan-illuc

Thanks much enan. It definitely helps to hear others experiences. Appreciate the words of support.

MaryA_ profile image
MaryA_

Thank you for the articles PMR 2011. I certainly will read them tomorrow while under going fasting glucose testing.

Insight329 profile image
Insight329

PMR2011, that article was incredibly informative. Thank you so much for sharing it!

Best wishes on your Actemra journey. I sincerely hope it helps your tapering. Please share your experiences with us. Best wishes.

PMRpro profile image
PMRproAmbassador

It is an excellent summary - and what a shame more doctors don't appear to have read it! However - it is from 2007, a lot has happened in the last 10 years!

PMR2011 profile image
PMR2011 in reply toPMRpro

Yes PMRpro, as for disease management definitely need newer resources. My husband smiles when I print off another article to add to my ever growing pile. He knows I come from a family of engineers, (tho somehow I ended up a nurse) we are “problem solvers”, and it is my way of working through it.

micheleinnaples profile image
micheleinnaples

I printed the first document...it looks quite thorough. I wasn't able to open the second one. Many thanks for keeping us up to date. I have a very important Dr. appointment tomorrow and this information will be a great resource.

PMRpro profile image
PMRproAmbassador in reply tomicheleinnaples

Yes - meant to say, the second doesn't open...

Jackoh profile image
Jackoh

Yes always good to educate yourself. Unfortunately I don't seem to be able to open either but then that possibly is me. Will have a go again with first one.

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