PMR and the new Shingles vaccine

I too am having trouble as I inch below 10 mg. I’ve been reducing by . 5 mg every 14 days or so but now that I’m at 9, I think I’ll adopt the feathering in process ( Dorset...) that Peggy alerted us to, and do a few days of 9.5 and ramp down even more slowly. I’ve been diagnosed for nearly 1 year, and had one relapse when I went down to 8.5 that included GCA symptoms, no good. So I’m super cautious this go around.

When you are unable to reduce, it usually means the PMR is still there. I was on 6 mgs for a year and then had knee replacement and had a flare afterwards a few weeks later. I didn't recognize it as such until after three trips to the ER. They didn't recognize it either. I had to quickly up it to 15 mgs for a couple of days, then go back down l mg at a time to 7 mgs for months. That was in my second year of PMR.

@karinaph, I have been diagnosed with GCA since June, 1919. Because I had already lost my vision in right eye, I was hospitalized and on IV infusion 1000 mg Prednisone for 3 days, to preserve the vision in my left eye. Following that, I was on quite high oral doses (was too ill then to now remember the exact doses), and had tapered down to 2.5 mg when I was suddenly taken off Prednisone because my WBC and neutrophils had bottomed out. At that time, I was also taken off Actemra injections for my GCA. I had been on the two Rx's since November, 2019. I was also taken off Clozapine at that time. All 3 of those meds can cause WBC and neutrophil drops for some patients. Terrible withdrawal happened, lasting for 6 weeks! I was also in a lot of pain, having stopped the GCA meds so suddenly.
I think stopping Prednisone too soon without tapering for long enough, was disastrous for me. Be careful and be sure to taper slowly! I'm only on the Actemra now - no more Prednisone or Clozapine.
Hope this might be helpful info for you, even though we don't share the same conditions.
Warm regards, Laurie

I was diagnosed summer 2019. Fairly typical: started at 15 mgs. Okay dropping to 12.5 and then 10. Had a flare at 7.5 and now I'm trying to reduce to 9.5 from 10. Taking it slow and easy. I still have stiffness and some pain, and I now understand the objective is to get to the lowest point with prednisone where we have minimal discomfort. Sometimes hard to know what that is. I felt great at 15, and pretty good at 12.5. 10 is okay too, but I guess it's worth some pain to get lower?? I assumed around a two year duration when I was first diagnosed, but I now know that probably isn't the case.I'm thankful to be able to connect with others who have first-hand experience.

Your story sounds so much like mine. I’m at 9 and definitely feeling more of the strange pain and muscle cramping or spasms. I’m now upping to 9.5 a few days a week based on good info from this site, thanks to Peggy.
The fear for me is the GCA, which I did get, and it’s awful and frightening, head pain ( not a headache as we know it) vision issues, and swelling of veins around the temple. Had to go back to 15 and have been working my way back down. I’m trying ( like all of you) to be patient, determined to get down but not pressing it given the GCA. Thanks for the words of support.

Oh Artist you have really had a go of it!! I’m so sorry for your setbacks and the vision loss. That’s my definite fear as well. The PMR is awful
And annoying and the prednisone icky BUT THE GCA is frightening. I take it the Actemra is specifically for GCA? I wish you a good recovery.

@karinaph, I didn't realize you have GCA too. I can certainly relate to your symptoms of head pain, vision disturbance and swelling and pain at the temples. I always have trouble explaining to my doctors that it's not like a headache, it's head PAIN. That was a big problem before I finally got the GCA diagnosis. I had been at the ER five times before the docs diagnosed our "rare and dangerous" disease. I lost sight in my right eye before it was confirmed. 😥
I hope you continue to improve. Take care.
Warmest wishes,
Laurie

My mother had GCA. She was started on 60 mgs. of prednisone which is the typical starter dose. Were you ever given more than 15 when you contracted GCA? I think many of us with PMR are watchful of GCA symptoms, and I agree with you...frightening.

@karinaph, oh gosh, I texted my last response to you before I read this one of yours. Yes, the literature states that Actemra is the "only" medication to help GCA, so far. It's much easier to take than Prednisone. I was on Prednisone for over a year before I was referred to a rheumatologist, who then prescribed Actemra for me. I've been on it for about a year now, coupled with tapering off Prednisone, but now only on Actemra, minus the Prednisone.
It's a funny coincidence your having GCA as well as PMR, because I just placed a call to my rheumatologist today asking if I had been diagnosed with PMR as well. They're going to get back to me. Told them I'm having so much hip and knee pain, as well as shoulders, neck and elbows. Also daily headaches, and two recent blood clots. I realize this could all be from the GCA but as I read postings from the Mayo group, it seems so familiar! I wish you speedy recovery! Take care. Laurie

I got the first Shingrex vaccine and a flu shot simultaneously at the end of Sept. 2019. Within a week I was sick: low grade fever daily, painful shoulders, neck, arms, and hands with zero energy. It took 2 months to get diagnosed with PMR. I finished tapering off Prednisone on 2/20. Now I’ve had the 2nd Moderna COVID vaccine, and am experiencing severe shoulder pain and arm weakness. I’m supposing it’s a PMR flare up. I’m having Cortisone shots in both shoulders 4/5; then April 23 will have a blood test for CRP level. I’ve always been super healthy. I suggested the correlation to my Dr. and she didn’t think the shingles vaccine was the cause of PMR. Nice to know I’m not crazy.