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

Yes, @valerie6062 , please, take it slow. It was my experience with my rheumatologist to taper by .5mg every three to four weeks once I got to 10(and I rode the up-and-down roller coaster too). He also advised that if I felt a bit 'off' just to go an extra week or two on the same dosage. Slow=win, or at least you are giving yourself the best opportunity. I'm holding at 3 now for about 6 weeks because I'm going to be taking a few flights and doing a lot of things I don't usually do!
Good for you, you have come this far, don't rush.💞

Thank you for your input. I'm in my 2nd injection of Actemra and they tapered my Prednisone down to 30 mg. Lessening of pain but still have very blurred eyes. I also am also scheduled for cataract surgery so I'm not sure how much of the blurred vision is coming from GCA. Also seeing Vascular and venous ultrasound. I think it's too late for a biopsy. My Rheumatologist started it most likely won't give a definitive diagnosis. She's making her determination on the blood test results and symptoms. Wish you luck on your journey too.🤞

I just had a biopsy (Temporal) for GCA, which thank God, was negative.
I have been on Prednisone now for several months. Last time I tapered just 5 milligrams it flared again. I’m now at 15 and will be reducing down in another week to 10. My ? Is has anyone had to have more than one biopsy during active PMR? Can it pop up later the GCA problem? Wouldn’t want to risk my sight. Very curious what anyone has to say on this. Thanks so much!

@nativeoregirl I have a great deal of compassion for what you are experiencing. My feeling is that you have a very healthy approach to this.
Having lost the sight in one eye from a misdiagnosis for nine months, I could never truly understand folks obsessed with getting to zero prednisone when it comes to dealing with GCA. Only after I lost the sight, did they do a biopsy...and then I wasn't put on prednisone for a few days...no pulse treatment. You are wise to be vigilant, I am. I've been on Pred and Actemra for three years and now take just 3mg plus my weekly injection.
I don't know if they ever have to do more than one biopsy. It took me lots of time to get to this low a dose, and I would go up and down and finally got to single digits in 2023. I feel good now and to me it seems like I see almost everything...I paint watercolors.
Certainly, I'm not trying to frighten you...I'm complimenting you. Personally, if I had to continue or increase my prednisone, that would be fine. Like you, for me, it is about being aware, having a very good rheumatologist, and doing all I can to see as much as I can. Take good care...💞

Thank you, Grammy! Yes, it is frustrating, I had to wait 9 months to see this Rheumatologist, and most of the time she is just leaving on vacation or coming back from one. I had to wait 3 weeks for the results of this biopsy and they called today to tell me Dr is back in India and will get to me in mid-July. I have only seen her twice both times going on vacation, and she's gone for weeks at a time. No answers in between She is very good but scattered with where I am at in my treatment. The assistant/Office Manager tries to play Dr. and cannot keep two thoughts straight. I am afraid it is the times we are living in post covid. Drs are disappointing me. Don't want to change because I know it will be more of the same. By the way, I still didn't get answers to why I should taper down without knowing the results. Thank god, they came back negative. The biopsy was terrifying they didn't give me enough medication, and it was done in a very small outpatient facility/building smaller than a dentist's office. The staff was great but I would never go there again for such a procedure. I felt they were running a racket especially when the next day when I went for the follow-up appointment at a larger facility, the same eye Dr. that was treating had a busload of patients. It was a turn-off to me that I was shuffled in quickly less than 24 hours after the biopsy. Anyway, I probably shared too much and strive to be positive but also I am a realist. Also, he and my Rheumatologist were not agreeing with my treatment. Go figure. Watercolors are so much fun and a great distraction. I just need to find more time.

Wishing you luck... I don't know if GCA could pop up again as a problem, but I don't think so? My dad was deemed negative for GCA, and his rheumatologist never mentioned him needing to be screened again. I assume/hope she'd check it if he had symptoms of it.

But on the prednisone dose, if this helps, if tapering by 5 milligrams feels like it might be too, you could go more slowly.

My dad (I am his caregiver; he is the one with PMR) had at least 3 significant flares (ESR went from around 20 to near 100 each time) in the 3 tries to drop his dose by 5 milligrams. He was never diagnosed with GCA; his highest prednisone dose was 30 mg.

After the third flare, his rheumatologist suggested to try tapering more slowly--he's gone down by 2.5 mg. every two weeks, guided by his lab results (ESR and CRP) and symptoms. Depending on how annoying it was to cut the pills, we would either alternate doses (i.e. alternate 30 mg with 25 mg every other day), or cut them down to 27.5, and so on.

With that strategy, he only had one flare that came after he got down to 10 mg. Thankfully, it seemed to resolve on its own after a week, and he continued on 10 mg for another 2 weeks. And now we will go even slower, now that the dose is low.

His rheumatologist is suggesting alternating 10 mg and 7.5 mg. If all goes well, we'll go to 7.5 mg daily. My dad is really sensitive to medication; thankfully she understands this.

@nativeoregirl I just wrote you the longest response...and poof it disappeared, so glad I found you again.
This is going to be condensed...I felt terrible about your biopsy, that it was such a bad experience. You mentioned 'eye doctor'. Are you in the States? When I went to ER when I lost sight in left eye...they scheduled my biopsy for five days later...told me to see an ophthalmologist (I don't think they had a clue) and set an appointment for 12 hours later. Really critical wasted time.
The only person who dictates my treatment or prescribes the pred and Actemra is my rheumatologist.
Your absent rheumy and dangerous office staff....need to be seeing you more regularly---at least that is my treatment. Actemra levels out the inflammatory marker in your blood test, CRP and ESR. If you are on just pred, my rheumy did that blood work monthly. I'm concerned you are being watched appropriately. Is getting a more available rheumy, monitoring you an option?
I keep watching YouTube videos on watercolor..I feel I use it like acrylics and have to loosen up and let the water do its thing...difficult for me, but I love it. Time is an issue!! My best💞

Thanks Grammy for your fast reply! My blood inflammation markers are
normal and initially elevated but still very very low. I have all the
other symptoms, neck, right shoulder very painful (also could be a tear as
well in shoulder), headaches now since lowering my pred from 20-15. DR us
checking blood every two months. I’m hoping once she’s back she’ll be more
attentive. I did have a very long zoom call with her last appointment. I
know you can have PMR with normal inflammatory levels and I don’t know
where I’d be without the prednisone. I couldn’t move my arm and I hurt so
much it was debilitating. So once I started treatment I am much better
until this last taper. I know it’s a process. I’m 70 live here I. The
states in the Pacific Northwest “Oregon”. have a great job as an
advertising consultant in the world if Nursing Recruitment- my focus is on
Nursing Schools to promote their Online Nursing Education I work less than
part time and live it. I live alone with my Mini Golden Doodle however I
have a Don and his family nearby with 2 grandkids.
I know thisPMR is the result if my last Covid booster- and it will be my
last for sure! Ha ha. Thanks so much for sharing your experience and
thoughts! It means a lot. I love wAtercolirs! I started with acrylics
years ago when I had time to make for it. There is so much out there
online to learn from and free! I have tons of watercolor books and that
had worked very well for me better thAn any class although I like the
camaraderie of a shared experience ! I know this was long but wanted to
give you my bio! I guess I need to put it out on this site too! Be well
keep painting! Deb

I’m one of these PMR patient's with normal blood inflammation markers. Initially when first diagnosed they were only slightly elevated. I have all the other symptoms or points. I could hardly move at the onset and once on Prednisone I did do much better. Then they pulled me off of it and it came back worse than before. I guess that was a very telling sign when symptoms came back within 2 months. Yes I am feeling the 5 mg drop and will take your advice and split that in half to 17 mg instead of 15. Dr is not around so I will take it on myself for now. Thanks for the advice, well received and appreciated 👍

@nativeoregirl That was uplifting, Deb, and I appreciate the bio also. It sounds like you are basically satisfied with your rheumy, and I'm glad. I'm sure I mentioned it previously...but the taper that worked for me is slow. It is .05mg per month, and if I feel out of sorts, I stay put until I don't. Your job sound so fulfilling, and I bet it makes it easier to push through discomfort sometimes!! What a great feeling to think of how many people you are ultimately helping.
So glad you have family close by as well. I was living alone when first diagnosed, and it can be wonderful, but it is good to have someone close by.
YouTube is the greatest!! There is a Senior Center in my town that has art classes on Wednesdays.
I only started going three weeks ago. Since I had to give up my license three years ago, getting out of the house and being around other people is a delight. I am a real people person...and enjoy socializing. But, you are right...there is more material on the computer than time. I'm happy you wrote...I was concerned. You seem very knowledgeable and in control.💞