New PMR patient, wondering if mornings will become pain free someday

I have been off prednisone for nearly 3 years. I still have visits with my rheumatologist every 6 months or sooner if needed. My PMR condition is being treated with a biologic medication. Several other autoimmune conditions seem to be in remission. I have never been diagnosed with GCA but I still see an ophthalmologist regularly because one of my autoimmune conditions can cause vision loss just like GCA.

The "no pain" issue is confusing to me. I can't remember the last time I had no pain. My rheumatologist asks me about pain. I assume she wants to know if I'm having PMR pain. I say "no pain" is being caused by PMR or any of my other autoimmune conditions.

When my rheumatologist asks about other things that cause pain. I rate my pain as a "5" because that is my "normal" average pain level. This pain is caused by things which I don't associate with PMR or any of my other autoimmune conditions. Anything above "5" would be "abnormal" pain which might be PMR or autoimmune related.

When I say "no pain," I'm referring to pain and inflammation from my autoimmune conditions that prednisone might treat. I currently don't think I need prednisone for that kind of pain.

When I rate my pain as a "5," I'm referring to degenerative arthritis and other problems that I wouldn't treat with prednisone.

I think my rheumatologist understands me. When we talk about my back pain, she asks me what the neurosurgeon plans to do and what I'm taking for pain. My rheumatologist doesn't suggest I take prednisone but she is curious about why I don't take something else for pain. I guess a pain level of "5" is tolerable. The biologic I take works great for the rest of my autoimmune kind of pain.

My assumption is that when folks on this forum are talking "pain-free" they mean, as I do, pain from PMR. However, a personal side benefit of 30-35 mg of prednisone (for me at least) is literally no pain almost anywhere (i.e I can finally get into catcher's crouch when reading putts or playing with pets). However, this comes with ridiculous trade offs like shaky hands, a state of constant "unrelaxed" heightened (30 cups of coffee) awareness, and often a paradoxical bit of steroid myopathy (a strange feeling of weakness and dizziness while still feeling amp'd).

I'm gonna assume that non-PMR 69 yr old bones pain will creep back into my life when the weening continues, but hopefully not the shoulder bursa sack pain (PMR).
Ted

It sounds like you are experiencing some prednisone side effects.

I think we are on the same page when we say "no pain". For me, any attempt at a golf swing would be ill-advised for my 69 year old lumbar spine. A neurosurgeon recommends fusing my lumbar spine. However, I don't think it would be wise to fuse any of my bones.

The neurosurgeon describes my gait as "functional" instead of normal. I have a rollator so I won't fall. My rollator allows me to sit down whenever I want. I just wish my rollator worked better when I want to use the stairs.

I used to describe PMR in terms relative to my age instead of a level of pain on a scale of 1 to 10. I would tell my rheumatologist that PMR made me feel like a 120 year old person when my actual age was only 60. For emphasis, I said PMR felt like rigor mortis was setting in.

I'm trying to put PMR and the chronic inflammation in my past. I'm trying to move on. I'm over it thanks to the biologic I take.

The biologic has allowed me be on zero prednisone for the last 3 years. My first prednisone dose was 35 years ago. My endocrinologist says "decades of prednisone use." I can't begin fathom how many mg's of prednisone I have ingested during all of those years.

The typical starting dose seems to vary from country to country. In Australia the usual starting dose is 15mg. I started on 15mg with good results.

A bit late to the party here, but I was diagnosed with PMR about 6 months ago. Started off at 20 mg prednisone and I'm down To 7 1/2 mg; 2 and 1/2 mg in the evening and 5 mg in the morning. But I am still very stiff all morning and may ask my rheumatologist to go up to 10 mg. Like everyone else, I am frustrated that this is not allowing me to enjoy physical activity. I will be 70 in December and ride motorcycles including dirt bikes. But I can't see being able to do that any longer and that is depressing. I know we all have to accept our age but this came on as a shocker as I have never had any real physical limitations. I know the prednisone taken in a large enough dose could eliminate all my pain most likely, but I am concerned about the consequences of taking it. So my question is, How much pain and discomfort should I tolerate; more pain = less prednisone or less pain = more pred?

Welcome @321design, That does seem to be the magic and elusive question when diagnosed with PMR and wanting to get rid of the pain and off of prednisone in the shortest time possible. I've had PMR twice now and started at 20 mg prednisone. First time took 3 and half years to get off with a six year remission and the second time took 1 and half years to get off and I'm working on year seven for remission. My rheumatologist reminded me we are all different and had me keep a daily pain log along with the dose for the day. He told me when it was time to taper I had to listen to my body and if the pain was too much to try another week at the same dose to see if it got better or worse. If it got better I tapered to the next level down. If it got worse, I went up half of my last taper down. For me that number was a 2 or less on my pain scale of 0 to 10.

You might want to read through the experiences of others on tapering. Here's a link to the search results if you want to read through some of the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=tapering%20off%20prednisone.

Sadly I gave up my motorcycle and dirt bike days in my 50s due to other problems not related to PMR. I can relate to not wanting to quit doing something that is fun and enjoyable. Have you tried making any lifestyle changes to help with the PMR?

Thanks John. I did read the discussions about how others dealt with tapering. It seems to vary according to the individual. I guess my confusion is about how much discomfort is worth taking less pred. because of the long term side effects. I'm on 7.5 now but have pain until the afternoon. Should I go up to 10 if it eliminates all pain? Of course the test numbers need to be acceptable. I will have this conversation with my rheumatologist in a few weeks.
Activity wise I am used to doing a lot of physical things; exercising, hiking, working around the house and riding. Very hard to not do those things. I am also trying to heal a hamstring strain from a dirt bike fall. I cannot see giving them up.

If you like and trust your rheumatologist, iIwuld follow his/her advice. Raising prednisone doseage does not necessarily reduce pain. Everyone may have different results.

I agree, trust your rheumatologist, but be honest with him/her. You should not have to hurt till mid afternoon. My gauge, and my rheumatologist also, is to be pain free, or being able to live your life pain free, within a couple hours in the morning. My doctor added Plaquenil to the prednisone and it made a world of difference. Now I’m tapering the prednisone. Yes, I have side effects from the prednisone but evidently the Plaquenil is the safest, and one of the oldest drugs for PMR and RA. But, as you have read, everyone is different.
Good luck.

I think we can all agree that what pain level is acceptable depends on the individual. I willing tolerate an hour of stiffness and some pain when I get up to stay off prednisone. As DadQue says it is not easy separating PMR pain from old age pain or fatigue. I am soon to be 83 and glad to have prednisone in the rear view mirror.