@lashley75 do you get your inflammatory markers tested with each doctor visit? I would encourage you to know your numbers and consider going on 5mg for 4-6 weeks then taper a little slower if they are high. It is very possible that you still have an active PRM flare and once you get your inflammatory numbers low it is mostly about living a lifestyle that does not contribute to raising your numbers. Things like exercise, low refined sugar, eating fewer refined foods, eliminate fast foods, taking extra time to heal from the flu, etc all help to keep PMR at bay.
I actually developed an allergy to Tylenol (hives and itching - very rare) since my PMR diagnosis by taking too much over several years. Please be careful.

I too am determined to get off steroids asap. Reducing at 0.25mg per week and down to 6mg Pred after a very bumpy 9 months. Hydroxychloroquine is helping me at present, hanging out for the results of the latest blood test to see if the results confirm my feeling that the PMR is better controlled. Like you, i still have pain that has me reaching for strong Paracetamol but its not stopping me from moving. I dont think my blood markers will get back into normal range due to my Osteoarthritis but as long as my CRP is going down and not up, i will continue to press on to zero Prednisone.

@lashley7
I understand you not wanting to live with the possible side effects of steroids. But I hope you will watch very closely for any new symptoms. Most specifically, if you develop some of the symptoms I'll list below it could mean your disease has moved to GCA (Giant Cell Arteritis.) Which can be life-threatening, can cause strokes, aneurisms, blindness, heart attacks etc.

GCA is an inflammation of the lining for the arteries, most often in the upper part of your body (head) but can move to larger arteries in the body. One way it was described to me was people get hardening of the arteries and get into trouble when an artery is blocked. The same thing happens when you have GCA only the artery has the ability to close (with too much inflammation) having the same effect. Which then can lead to those life-threatening consequences I've mentioned.

It is awful and considered an emergency. I knew about GCA when my husband developed PMR but just hoped and prayed he wouldn't get it. I didn't read much about it because it was frightening and I figured no point scaring myself with something he only had a 15-20% chance of getting. Now I wish I had but hindsight is 20/20.

Then as he was tapering off Prednisone (PMR diagnosed May 2023, put on 30 mg prednisone, had tapered to 12.5 mg by February 2024 with doctor's recommendations and weekly labs to check inflammation levels.)

In February of 2024 he developed these symptoms, all consistent with GCA diagnosis:

- Persistent, severe head pain, usually in your temple area
- Scalp tenderness
- Jaw pain when you chew or open your mouth wide
- Fever (he had low-grade fever on and off)
- Fatigue
- Unintended weight loss

Two additional symptoms listed on the Mayo Clinic website are 1. Vision loss or double vision, particularly in people who also have jaw pain and 2. Sudden, permanent loss of vision in one eye.

Very fortunately his eyes have not been affected. Last week I heard him talking to his nurse and telling her he was having a little blurry vision. Hopefully it's nothing. We will have his eyes checked ASAP.

With these illnesses, both PMR and GCA, we have learned to not let things go for very long. If you notice a new symptom that persists or gets worse over a few days, notify your doctor. And if you develop any of those for GCA contact your doctor immediately. If you are unsuccessful at someone listening to your concerns or can't get an appointment head to the ER. GCA is considered a medical emergency and should be treated that way.

I don't tell you all of this to scare you. My husband could have lost his vision or even his life. His rheumatologist wasn't on board when I described his new symptoms in February. I told her I suspected GCA, though hoped not, and she said she didn't believe he had it. She wanted to increase Prednisone a little as his inflammation levels were rising. I told her I felt we should get the arterial biopsy done and she didn't agree. After a few phone calls to her nurses, as his symptoms worsened, and finally the doc called back. I explained how bad things were and she finally agreed to the biopsy, making sure to let me know she was doing it because of my insistence. I felt horrible, having my husband go through this, in the event I was wrong. But what if I was right?

Sure enough, not only did he have GCA, in the end she admitted he had the worse case she'd ever seen. She told us if he developed another headache while awaiting the results of the biopsy, to go to the ER. That night we landed in the ER and the ER doc said he was not being treated properly for the severity of his condition (his levels had been rising quickly) - she put him on a 1200 mg infusion of prednisolone (3 infusions in 3 days). I was scared. I thought 60 mg of Prednisone was high. I didn't know people could take this much.

Those infusions likely saved his life. Once they were over, he went on 80 mg of Prednisone. Once we were out of the ER his rheumatologis would not allow us to split the dose, saying with GCA you absolutely cannot split the dose. Follow this closely. When we gave one single dose his headaches returned in the middle of the night. Headaches are dangerous with GCA. In an effort to not land once again in the ER I made several calls to her office and finally got a really good nurse who listened and cared enough to run his story by the Chief of Rheumatology who told her that it is not safe to take 80 mg all at once and that the dose should be split. We were furious! We asked if it would be possible to schedule an appointment with the Chief of Rheumatology, thinking it was a big ask. She called me back and said the doctor agreed to come to our town to see my husband. Once we saw her she agreed to be his new doctor and things have gone more smoothly since.

There are a few takeaways that I think are really important. First, if you are not happy with the treatment you're getting from your doctor, find a better one. Keep looking until you find one you feel good about, who listens, who cares. Then, be sure you're getting your inflammation levels tested frequently. If they go too high you put yourself at risk. The last thing I want is for you to get GCA. Good chances are you won't.

As far as PMR, I'm not sure it's wise to self-taper. I haven't yet read what others are saying but I think it's important to remain under the care of a doctor and be sure inflammation isn't getting out of control. And listen to your body. If you get any of those GCA symptoms I would not hesitate to call your doctor, as I said, or go to the ER. If your inflammation levels rise again and your PMR worsens you could be forced to start all over again with higher doses of prednisone. I think it's better to follow tapering with a doctor who is testing you often.

That's the best advice I can give. Here's a link to the Mayo Clinic website on GCA. My doctor said Mayo Clinic and Cleveland Clinic are reliable sources, so those are my main go-to's. Also the rheumatology website (can't think of what it's called at the moment.)

Good luck and I hope you're doing better.