GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Claudation of my jaw was a symptom plus terrible terrible headache
Luckily my GP put me on a lot of prednisone and then booked temporal artery surgery which revealed CGA
I was really in bad shape the prednisone was a miracle

Were you then diagnosed with PMR/GCA @jardine1? Were you prescribed prednisone?

@issyb My moon face is now gone, and guess what? At 82, I have wrinkles that had been masked with my prednisone facelift.
I was diagnosed with GCA in August of 2019 and have just reached 3mg per day. Do not lose heart at this fact because I lost sight in one eye and was in no rush to have a flare. I just got to 10mg in February of 2023. There is no prize for getting to zero....the winner has no flares. My best to you!💞

@jardine1 I'm so thankful you got properly diagnosed since that is not always the case. I had jaw claudication and couldn't eat anything...but my doctor insisted I had the flu! Surprise! , turned out to be a raging case of GCA.💞

So your Rheumatologist placed you on a maintenance dosage forever. My original one, (who is not a doctor but is allowed to diagnose and prescribe meds in NYS) after 6 months, just took me off and advised "if the TA happens again we'll do the same thing". Even after I asked her if I should continue on it. Not telling me that if it flares up anywhere within my body where it isn't noticeable I will have a stroke or die. After 6 months of being too weak to walk to the mailbox, another Rheumatologist (A DOCTOR, this time) put me on Prednisone and now Actemra and anticipates complete recovery.

Yes

It is interesting to see your experiences moving to the top of the thread from 2021 to now 2023. While neither my PCP mentioned "GCA" specifically they drilled down on those symptoms while I was being evaluated ( temporal headache , jaw, blurred vision ) and I certainly knew the (scary ! ) association of GCA and PMR by the time I saw the Rheumatologist.
Here is a manuscript I found with an interesting sections for everyone - especially about "medical cost burden" of PMR -
Feasibility and usefulness of a fast-track clinic for patients suspected of polymyalgia rheumatica: notes for a work schedule through a narrative review of published literature
first author : Elvis Hysa 2021 Rheumatologia; 59,5: 323: -329 Italian group

Medical costs of polymyalgia rheumatica Few literature data are available about the medical costs of PMR and the impact that the disease exerts on the national healthcare system. An American study was the first to report the financial burden of PMR; in particular, it was observed that individuals with PMR utilized a significantly greater number of outpatient and laboratory services compared with age- and sex- matched controls. More specifically, the authors evaluated that the additional total cost over 5 years ranged from $2.233 to $27.712, respectively, being the 10th percentile and 90th percentile [45].

here is another one of their findings :
Additionally, a key role explaining such variability might also be awareness of the disease among GPs. Partnership work and shared training between rheumatologists and GPs proved very effective in raising this awareness and familiarity. For instance, in our experience, the median time from symptom onset until rheumatologic referral was 22 days in the group of trained GPs and 42 days in the group of untrained GPs [23].

I guess luck for those of us in Boston, The Mass Gen Brigham and Women's Hospital HAS a fast track GCA clinic.

@moldy

I drew my breath at " who is not a doctor and is allowed to diagnose and prescribe..." I stopped breathing...so glad you have real doctor now!

I'm curious under what law can someone like that dispense medication?...and at the price of your sight!
💞

@nyxygirl
If I am not mistaken....you also have Dr. John Stone! I believe he participated in the clinical trials for Actemra.

When I was finally diagnosed with GCA in 2019 and searching the Internet to see what it was....the only thing I found was a video of Dr. Stone telling GPs how to better diagnose GCA...scary.

I did everything I could to make videos about GCA available on YouTube for folks like...all of us. They are there now from the charity Health Unlocked in England.

Knowledge chips away at fear and also makes us more informed patients.💞

@grammy 82 - you give good uplifting messages! Sebastian Unizony, MD who was on the Sarilumab Trial is also at MGH.
Might I ask you - have you ever gone down the path of looking into advocacy through Rare Disease patient groups ?? It all came together for me today - PMR is a rare disease! In USA there is NORD, for example.

A good friend responded to my PMR news today saying she was sorry to hear " although sometimes having a diagnosis helps you understand what treatments are out there" YES ! And my former boss gave me a good pep talk today about being on Prednisone - jeesh, he has gout !! -Which sounds awful.