@tsc. Thankyou for your message, Teri. I have a battery of new meds, following the July heart attack, including one baby aspirin daily, blood thinner, blood pressure meds, a pill to calm my heart down, Actemra injections every two weeks for my GCA, and other life saving meds.! You're likely in the same boat.
I do wish there were other GCA patients on Connect. It sometimes feels like I'm the only one in the world
(besides you?) that has this miserable disease. Thankfully, I have an excellent rheumatologist, although she's a two hour drive via Wheels for Wellness. She and her excellent nurses are always available to me by phone, and she watches my weekly lab work carefully in case adjustments are needed regarding the Actemra injections.
You asked how I manage daily activities. Well, they're pretty well nonexistent. I've graduated to going to the dining room unescorted, with my walker, once a day (need a wheelchair after each hospitalization), and I'm now having my daily shower on my own !! No more standby shower with Care Aid.
I think I've mentioned previously that I'm on a wait list for Long Term Care. (I live at an Assisted Living seniors facility right now.)
That's about it for now, Teri. I'm still working hard toward gaining strength and independence. My best to you. Laurie
Hello, @artist01 Although I had symptoms of PMR and GCA for a year before diagnosis, once treatment with prednisone started my symptoms pretty much vanished. This was fortunate in the sense that my husband has moderate Alzheimer's and I am his caregiver, his guide. He helps with some chores around the house, but I pretty much do everything else. My mother-in-law became sick with GCA when she was in her 80s and she was quite debilitated - so she went into a care home. I'm 70, so I don't know if that's made a difference in our outcomes. But she lived to be nearly 100, was president of the Resident's Council in her facility, and the GCA eventually left her. I hope you get settled soon and keep your spirits up. I'm glad that you have a good doctor who is available to you. Mine comes to our town every three months but is available by email. We never do know what life has in store for us, do we? There were some articles about studies on PMR and GCA in the Lancet Rheumatologist - so I'm going to post summaries of them there, probably in PMR Anyone. Best to you, Laurie.
@tsc Thanks for your message of encouragement. I haven't yet located the summaries you've posted on GCA and PMR so will try to hunt them down today.
I'm so pleased you had such a rapid recovery from your PMR and GCA symptoms once you had Prednisone treatment. My GCA drags on, but is vastly improved from when it first hit me in March of 2019. I was 83 at that time.
No word yet about when my move to Long Term Care might be. I'm very busy downsizing - a huge job! It would be so much easier if I didn't feel so dizzy and unwell. Whine, whine! Lol.
Anyway, I'm gettin' 'er done, one day at a time. Not doing too badly, mood-wise either. Onward to my new adventure!! Take care. ❤
Hello, @artist01 Although I had symptoms of PMR and GCA for a year before diagnosis, once treatment with prednisone started my symptoms pretty much vanished. This was fortunate in the sense that my husband has moderate Alzheimer's and I am his caregiver, his guide. He helps with some chores around the house, but I pretty much do everything else. My mother-in-law became sick with GCA when she was in her 80s and she was quite debilitated - so she went into a care home. I'm 70, so I don't know if that's made a difference in our outcomes. But she lived to be nearly 100, was president of the Resident's Council in her facility, and the GCA eventually left her. I hope you get settled soon and keep your spirits up. I'm glad that you have a good doctor who is available to you. Mine comes to our town every three months but is available by email. We never do know what life has in store for us, do we? There were some articles about studies on PMR and GCA in the Lancet Rheumatologist - so I'm going to post summaries of them there, probably in PMR Anyone. Best to you, Laurie.
Hi @artist01 and @johnbishop - I'm sorry I was careless in communicating this. Scroll up to the top left of this page and click on GROUPS. Then go to Polymyalgia Rheumatica Group. Then go to DISCUSSIONS and scroll down to GCA + PMR Some Study Updates. I hope this works, Laurie. Best, Teri
Hi @artist01 and @johnbishop - I'm sorry I was careless in communicating this. Scroll up to the top left of this page and click on GROUPS. Then go to Polymyalgia Rheumatica Group. Then go to DISCUSSIONS and scroll down to GCA + PMR Some Study Updates. I hope this works, Laurie. Best, Teri
@artist01 and @tsc - An easy way to point someone to a specific discussion or a post if you are reading it and know where it is -- click the three dots at the lower right corner of a post or a discussion and select Copy link to clipboard. Then paste it like I did here except I clicked the three dots by the discussion and not this post. https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/
@artist01 and @tsc - An easy way to point someone to a specific discussion or a post if you are reading it and know where it is -- click the three dots at the lower right corner of a post or a discussion and select Copy link to clipboard. Then paste it like I did here except I clicked the three dots by the discussion and not this post. https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/
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Hello, @artist01 Although I had symptoms of PMR and GCA for a year before diagnosis, once treatment with prednisone started my symptoms pretty much vanished. This was fortunate in the sense that my husband has moderate Alzheimer's and I am his caregiver, his guide. He helps with some chores around the house, but I pretty much do everything else. My mother-in-law became sick with GCA when she was in her 80s and she was quite debilitated - so she went into a care home. I'm 70, so I don't know if that's made a difference in our outcomes. But she lived to be nearly 100, was president of the Resident's Council in her facility, and the GCA eventually left her. I hope you get settled soon and keep your spirits up. I'm glad that you have a good doctor who is available to you. Mine comes to our town every three months but is available by email. We never do know what life has in store for us, do we? There were some articles about studies on PMR and GCA in the Lancet Rheumatologist - so I'm going to post summaries of them there, probably in PMR Anyone. Best to you, Laurie.
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2 Reactions@tsc Thanks for your message of encouragement. I haven't yet located the summaries you've posted on GCA and PMR so will try to hunt them down today.
I'm so pleased you had such a rapid recovery from your PMR and GCA symptoms once you had Prednisone treatment. My GCA drags on, but is vastly improved from when it first hit me in March of 2019. I was 83 at that time.
No word yet about when my move to Long Term Care might be. I'm very busy downsizing - a huge job! It would be so much easier if I didn't feel so dizzy and unwell. Whine, whine! Lol.
Anyway, I'm gettin' 'er done, one day at a time. Not doing too badly, mood-wise either. Onward to my new adventure!! Take care. ❤
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3 Reactions@tsc: How do I find PMR Anyone, where you posted the summaries?Thanks, Laurie ❤ Sent from my Galaxy
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1 ReactionHi Laurie @artist01 - Here's the PMR Anyone? discussion - https://connect.mayoclinic.org/discussion/pmr-anyone/
Also, The Lancet Rheumatology site is great but a lot of the articles are fee based. You can search the site easily for PMR or GCA - https://www.thelancet.com/journals/lanrhe/home
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1 Reaction@johnbishop Thankyou so much, John. I'll get on it right away! Warm regards, Laurie
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1 Reaction@artist01 go to Some Study Updates, a new discussion opened in the PMR and GCA group. Best to you, Laurie!
@tsc and @johnbishop Hi again.
Can't locate "Some Study Updates". Help? Lol
Hi @artist01 and @johnbishop - I'm sorry I was careless in communicating this. Scroll up to the top left of this page and click on GROUPS. Then go to Polymyalgia Rheumatica Group. Then go to DISCUSSIONS and scroll down to GCA + PMR Some Study Updates. I hope this works, Laurie. Best, Teri
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1 Reaction@artist01 and @tsc - An easy way to point someone to a specific discussion or a post if you are reading it and know where it is -- click the three dots at the lower right corner of a post or a discussion and select Copy link to clipboard. Then paste it like I did here except I clicked the three dots by the discussion and not this post.
https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/
Thanks, @johnbishop. You are indeed a great mentor!
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