Precursor symptoms to PMR?

Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days. I take weekly injections of Actemra. I don't know yet what my rheumatologist has planned for the final 10 mg. I'll find out in 3 weeks at my next appointment. So far the taper has gone well. I haven't had any symptoms of a flare.

That's interesting about your synovial cyst healing back up.

I just did a quick google about what Actemra does, and the AI response had this information:

"Actemra (tocilizumab) is a medication that specifically blocks interleukin-6 (IL-6) by acting as an IL-6 receptor antagonist, preventing IL-6 from activating the immune system and causing inflammation; essentially, it blocks IL-6 from connecting to cells in the body.

Key points about Actemra and IL-6:
Mechanism of action:
Actemra binds to the IL-6 receptor, preventing IL-6 from signaling to cells and triggering inflammatory responses.

Treatment applications:
Due to its ability to block IL-6, Actemra is used to treat conditions where excessive inflammation is driven by high levels of IL-6, such as rheumatoid arthritis, giant cell arteritis, and systemic juvenile idiopathic arthritis. "

In the PMRGCAuk support group, they frequently say that there are 3 primary types of inflamation that can affect PMR and GCA, and depending on each person's mix of these 3 types determines if they can get off prednisone by taking Actemra.

I was just started on methotrexate because I’m unable to get below 40 mg prednisone. My CRP is still really high, and although I don’t have classic symptoms of GCA my rheum is wondering about large vessel vasculitis and wants me to have an MRI. I’m so tired of this and it’s only been 4 months.

I hope you don't mind my response to your question. I had symptoms of GCA for a few months without knowing what they meant. I had a low grade fever that slowly increased in duration from a few hours per day to most of the day. I also had night sweats, pain in my cheekbones and around my ears, and a lot of fatigue in my jaw muscles when I was chewing. I finally went to the emergency room when I lost the vision in one eye for a few seconds. It was like looking at a blank gray wall. My vision "glitched" several more times while I was at the hospital. Those episodes were like looking at an impressionist painting where some colors disappeared and others became more dominant. After running a lot of tests, the emergency room doctor diagnosed GCA. I was admitted to the hospital for 3 days to receive daily infusions of high dose steroids. That saved my vision. In the 6 months since I've been taking prednisone and Actemra, and haven't had any more symptoms of GCA or PMR.

Wow ... you are fortunate. Did you have PMR first?

I was diagnosed with PMR a long time ago. My rheumatologist still asks me about having symptoms of GCA. She says that she is "required" to ask me the questions.

I usually respond by asking her how would I know if I had GCA. I have the symptoms of GCA but I'm diagnosed with uveitis and trigeminal neuralgia. I'm glad someone can differentiate the symptoms.

I regularly see an ophthalmologist because uveitis causes visual disturbances and potentially vision loss. My ophthalmologist always reassures me that there is no evidence of GCA when he looks at my optic nerve. I have other eye problems but fortunately not GCA.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Trigeminal neuralgia caused such incredible facial pain that I couldn't speak for myself whenever I went to the emergency room. I felt that facial pain but attempting to speak only made it worse. I could only gesture with my thumb to respond yes or no when I was asked questions. My wife would respond and provide more details as needed when a doctor asked me why I couldn't talk.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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An ironic thing happened when my rheumatologist got approval for Actemra. Since I didn't have GCA as a diagnosis he needed to seek approval before I could try Actemra. My medical records were carefully reviewed and the recommendation was to treat me "as if" I had GCA. My rheumatologist was instructed to follow the guidelines for Actemra use for patients with GCA.

I hope you don't mind my response to your question. I had symptoms of GCA for a few months without knowing what they meant. I had a low grade fever that slowly increased in duration from a few hours per day to most of the day. I also had night sweats, pain in my cheekbones and around my ears, and a lot of fatigue in my jaw muscles when I was chewing. I finally went to the emergency room when I lost the vision in one eye for a few seconds. It was like looking at a blank gray wall. My vision "glitched" several more times while I was at the hospital. Those episodes were like looking at an impressionist painting where some colors disappeared and others became more dominant. After running a lot of tests, the emergency room doctor diagnosed GCA. I was admitted to the hospital for 3 days to receive daily infusions of high dose steroids. That saved my vision. In the 6 months since I've been taking prednisone and Actemra, and haven't had any more symptoms of GCA or PMR.

How long have you been on prednisone? , and how many milligrams per day. I can’t get below 6 mg in almost 3 years.
So happy that your vision was saved 🤗

Thanks for your response. That was a scary time when my vision was glitching out.

I've been on prednisone for 6 months. I started at 60 mg / day, and I'll be stepping down from 12.5 to 10 in a couple of days. I won't know the taper plan going forward until my rheumatologist appointment in 3 weeks.

Do you know if your problem tapering is due to the PMR still being present or because of adrenal issues?

I read that if you get the same pmr symptoms, it could be a flare, which could mean your pmr is still active.. Tapering symptoms I read are usually different. When I have trouble lifting arms when tapering I usually up my dose for a bit.
It’s so hard for me to get to 6mg, best when you get to 10mg to stay on it for a month, then try to lower 1mg at a time for a
Month. Maybe you won’t have the same issue I have. I don’t feel the tapering was an adrenaline issue.
I thought I had GCA , but found out it was prednisone induced cataracts, it happened pretty fast.
I can’t imagine how scared you were.
Discovering I had breast cancer created a flare of the PMR.
Stress can be big culprit.
I wish you the best🙏

Hi
I have tried half’s and also tried alternating slowly. And tried methotrexate in the beginning.
It’s amazing how you learn to know how to deal with meds. Only you know your body and what it’s telling you.
And I did experience Tmj about 4 years ago and triigimonal nerve pain when I was younger. Usually one sided so.
I know what that feels like.
Did you have pain on both sides of your jaw?
Have a happy New year 🤗