Better to be in some pain or better to up the dose of prednisone?

I have never been diagnosed with GCA. I have a different autoimmune condition that flares and can cause vision loss but it isn’t GCA. I also had a condition that caused extreme facial pain and headaches but that wasn’t GCA either.

Basically, I had every symptom of GCA but not GCA.

Thank you for the info. I am very frustrated about the additional medications needed to treat the side effects of prednisone- all with their own side effects. One medication actually has the side effect of possible muscle and joint pain. So I struggle with what is causing how I feel. Is it PMR or side effects? I am down to 5mg prednisone. I also take a daily injectable for osteoporosis, a weekly injectable for blood sugar, MTX, Humira once every two weeks (for possible seronegative RA) - all related to being on prednisone for two years. My Dr says my insurance won’t cover Kev - yet. So I am spending insurance money at at least $1500 a month for all these other meds to treat symptoms related to prednisone. Ah, the logic of it all. And to still have pain and elevated inflammatory markers Up the prednisone?

Rereading this please know I really am an optimist filled with hope - but there are days.

Just so you know … I have seronegative inflammatory arthritis which was diagnosed approximately 20 years before PMR was diagnosed. It is possible to have inflammatory arthritis with PMR on top. It sounds delicious but it is very complicated to treat.

My rheumatologist insisted PMR was my primary problem so Actemra was targeted at PMR. I was able to taper off prednisone but Actemra didn’t keep inflammatory arthritis in check. Actemra was actually stopped and Humira was tried except after 3 months on Humira … PMR flared up again.

My rheumatologist said it would be impossible to optimally treat both conditions so I was told to choose Actemra or Humira but not both. I chose Actemra.

There were some dose adjustments and a switch from injections to a monthly infusion. Eventually I was able to taper off prednisone a second time. Currently it seems like Actemra infusions are working for PMR and inflammatory arthritis.

Thank you so much for your information! And I wish you well with your current medications. Your comments have given me very valuable information for my upcoming visit with my rheumatologist. The seronegative RA diagnosis was a surprise. I've been expecting the Humira to make things better and I could continue my prednisone taper. Reality is, I am in the midst of a flare and will be going back up on prednisone. Reading your comments has helped so much to understand this new wrinkle. Thank you!

To track daily pain do you use a spreadsheet or just right down what your pain is each day? Sometimes I feel my pain is do to activity or in-activity. Consequently if I am in an activity it is not convenient to write down the pain I am having. I play tennis and walk so I need to make it easy to keep track of the exact pain and activity.

Do you have a wall calendar? On the odd occasion I have aches in the morning (usually while reducing dose or after cutting a load of firewood, for example) I write it on the calendar. If I do some unusual activity I write it down, and record if there are aches later. Early on, I used to record a few words each morning, but I'm usually without PMR aches now, so only do it on the days when something is different. Do it the way that suits you so you can see patterns and perhaps adjust your activities.

I just set mine up after someone suggested. I have a spreadsheet and track: date; prednisone mg; sleep hrs: AM Pain Level; running miles; difficulty of the run; walking miles; lifting minutes; babysitting minutes; headache level; mental health rating; PM Pain level; weight; nap minutes; other actvity and notes.

How I feel on my run has been a good indicator of my health over the years, so I'm tracking it. I also have suffered from depression and battled headaches all my life, so I track that. I felt these were good indicators for me. But!

This is a learning experience, so I am not sure I'd pay too much attention to what I say. Just an example. I am open to suggestions from anyone! It would be nice if several of us tracked and compared. (As a side note, I also try to stick to an anti-inflammatory diet and watch my weight. I am down pretty low, but I've heard a lot of PMR patients lose weight despite the prednisone.)

Some pain may not be PMR pain, it might be osteoarthritis pain, degenerative disk stenosis pain or other type of normal aging pain. First, is the pain bilateral? PMR pain is known to be bilateral so if it is only in say one shoulder possibly it really is not PMR pain. Next is it a totally new pain, never having had it prior to PMR? It certainly is possible that you have a new aging pain post PMR, however it could be PMR. Are your inflammatory markers elevated? If they are not, then please consider that it could be a "normal" aging pain. Discuss this with your Rheumy and/or your PCP. I noticed that once off my prednisone for PRM my osteoarthritis reminds me that I am no longer a young lady but rather an older lady!

"Some pain may not be PMR pain, it might be osteoarthritis pain, degenerative disk stenosis pain or other type of normal aging pain."
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This is true but the pain still hurts and is not normal because of age. My rheumatologist would suggest other interventions for documented osteoarthritis, degenerative disk disease and spinal stenosis. I felt that it was easier to take Prednisone for any and all kinds of pain.

My rheumatologist had a hard time convincing me that Prednisone wasn't appropriate for all pain. I finally agreed after I did surgery to correct a few problems. Prednisone only delayed more appropriate interventions and prolonged the pain.

The neurosurgeon who did surgery for trigeminal neuralgia was skeptical about how severe my pain was. He said people who have trigeminal neuralgia usually had a list of pain medications a mile long. He wondered what pain medication I took because he didn't see any pain medications listed. I said I only took Prednisone because everything else I tried didn't work well.

After my surgery, the neurosurgeon said my problem was one of the worst cases he ever saw. The surgery took much longer than he expected. He apologized and said he did the best he could under the circumstances.

I asked the neurosurgeon if prednisone helped the pain. He understood how prednisone probably helped the swelling and inflammation in the microscopic area near my brain stem but surgery was the better option.

I too set up a spreadsheet to track dose and pain by day. I did it in Google Sheets and can get to it from my phone, pad, or desktop. If I get ambitious I might try to figure out how to graph it.