I have PMR can tapering bring about GCA?

Posted by lsa22 @lsa22, Sep 6 12:45pm

I am 64 year old female and an avid cyclist. I came home from a south pacific cycling/cruise trip in May. I started a prescription of terbinafine to cure a big toe fungus and within a matter of days was unable to get out of bed in the morning with sore stiff gluts, hips, shoulders, triceps. I was diagnosed with PMR - all blood work was normal even SED and CRP. At 30 mg prednisone I was pain free (split 20mg am 10mg pm. I started a tapper in July with Zyenne injections 4 in total 2 weeks apart with a tapper to 5mg (split 2.5 am 2.5 pm). I had a bad skin reaction on the 4th injection so doc changed to Kezvara this week. I feel stuck at 5mg and even wonder if now I am getting GCA. I have not had any classic GCA symptoms like I did with PMR.
At 5mg prednisone
-my shoulders do hurt in the morning but get better as I stretch and do strength exercises.
-my hips get stiff is I sit too long.
-feeling of pressure on top and back of head
-pain in back of neck
-maybe a vision change on left eye, or I am just going a bit crazy.

I am so exhausted from this condition and in denial and now could I really be getting GCA? How do you know for sure?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I have GCA and PMR, so I'm familiar with both conditions. It sounds like your PMR is not completely controlled by 5 mg prednisone. Google says Kevzara can take up to 12 weeks to take effect. You could ask your doctor to raise your prednisone dose a little to get you through until the Kevzara starts to work.

Regarding your vision, you could see an ophthalmologist and tell them you have PMR and are concerned about GCA, and they can look for any early signs of GCA. Also, prednisone can affect your vision. It can cause glaucoma and can accelerate the development of cataracts. So it's good to see an ophthalmologist regularly while you're taking prednisone.

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There are tools that could diagnosed GCA. An ultrasound or temporal artery biopsy. As @jeff97 suggested, you might want to see an opthalmologist. I acquired PMR and suspected GCA in July 2024 and I had a bi-lateral temporal biopsy. The result was inconclusive. No unusual for that to occur. Since I was showing classic symptoms, I was treated with 60 mg. of Prednisone for 6 weeks. Then, I began tapering. My headaches would be across my eyebrows, to my temples, over my ears and behind my ears. The GCA didn't really affect my vision. What did affect my vision was the prolonged use of high doses of Prednisone, which also, increased my blood sugar. Not unusual for it to be over 200. My vision is worse now, than pre-PMR/GCA.

Now, I am down to 3 mg. of Prednisone, with the help of Actemra infusions. I still aches in my knees and hips, but it's manageable. Good luck!

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Thank you @jeff97 and @ropnrose for the help and advise. I hope to see a ophthalmologist soon.

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@isa22. I believe you will have to have that appt with the Rheum and/or the opthamologist for the GCA diagnosis. I just wanted to bring to your attention that the taper from 30 to 5 mg, from July to now, is VERY fast. It is possible that you are simply feeling the PMR still as it is not being controlled (pain that is) by the lower doses of Prednisone. I am not an expert but that is much much faster than the recommended tapering time frame put out by the international body on PMR back in 2014. The Kevzara (and Zyenne) can both help with tapering but I have not seen any real data or even anectdotal info on how hard (fast) you can push the taper when on one of these biologicals. The lack of evidence or data on that very idea (how hard one can push the taper when on Kevzara) is something that I used when I decided NOT to do Kevzara. I have been pushing the recommended taper protocol of 1-2 months per mg when in the single digits of prednisone. I am doing a 1 mg drop every three weeks once I hit 10 mg. I spent a little over a month at 15 mg, then a month at 12.5 and then a month at 10. I then started the 3 week intervals when I got down to 9 mg. So far so good without a flair. It sounds like you are not having original pain but are maybe having more pain than warranted. That is a personal and Dr call (actually more personal in my opinion). If I stay on my tapering timing, I will be down to 0 mg in 9 months total from start of medication to finish. That is a good 3-6 months ahead of the recommendations I have read but so far it is working for me. I have an open prescription for Kevzara if I hit an impasse. Kevzara was clinically trialled in situations where people failed 1-2 tapers. Good luck and I hope you do not have GCA. I had some headaches at around my 12.5 mg per day mark and got scared. My chiropractor helped me with those. No problems with that so far since.

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I'm not sure what Zyenne is unless you mean Tyenne which is a biosimilar to Actemra. I have some personal experience with Actemra. A taper with these biologics is nothing remotely like tapering off prednisone alone.

You probably shouldn't have started a biologic along with Prednisone while having a fungal infection. I hope that cleared up.

Getting stuck on 5 mg of Prednisone doesn't seem too unusual to me when tapering that quickly. The adrenal issue starts to come into play. I was stuck on 3 mg of Prednisone along with doing Actemra injections. I was stuck for 6 months until my adrenal function improved.

Otherwise, if you have any concerns about your vision especially with PMR and while on prednisone, an exam by an ophthalmologist is advisable sooner rather than later.

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I am no expert having just been diagnosed with GCA in May 2025. But my local RA doctor, the Vascular Eye Surgeon that did my biopsy, and the RA doctor at the Mayo Clinic I saw all told me the first thing with GCA is protecting your eyesight . If I were you if you even suspect you could have GCA I would get myself on at least 20 or more mg of Prednisone immediately from any doctor I could.

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