Traveling with PMR

Have you seen this one? It is geared to doctors more so than patients.
https://www.pmrandil6.com/PMRPathophysiologyandIL-6Monograph.pdf

👍

Key point from the link below:
Prednisone doesn't solve the problem!
https://www.pmrandil6.com/PMRPathophysiologyandIL-6Monograph.pdf
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"Studies have shown IL-6 levels are rapidly suppressed by corticosteroids, which are commonly used to manage PMR symptoms. However, plasma IL-6 levels
immediately increase upon short-term withdrawal of corticosteroids, despite several months of treatment, suggesting that corticosteroids do not correct the
underlying mechanism that causes elevated IL-6 levels in PMR."
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Furthermore, long term prednisone use compounds the problem after the side effects from long term prednisone use begin to materialize. Don't let anyone convince you that prednisone side effects are easy to manage when you know how. The worst side effect, in my opinion , is adrenal suppression which makes it nearly impossible to stop taking prednisone. Clearly there needs to be better treatment options to replace prednisone.

I've read that 4 am is the peak time for the release of IL-6 and other inflammatory cytokines, so it is best to take prednisone in that time range.

hi @dadcue are you still somewhere warm ?
That link is quite the literature review, isn't it ?
and like I said below, that entire webpage does look revised , and says on top "for US healthcare providers" . I notice that I can no longer access uptodate.com , can't get a password , things like that . I think that one is (now) truly limited to physicians . @seniormed do you know anything about that ?

Thank you. Before diagnosing myself with PMR, I had started with shoulder and some neck pain that I was waking up with. I thought perhaps I was sleeping in a bad position or I needed some new pillows. Soon after the pain/stiffness progressed to my hips and thighs at which point I started to investigate on Dr. Google. I found I had typical symptoms of PMR and proceded to the PCP who would not give me steroids. She wanted the diagnosis from a Rheumatoligist and it was very difficult to get a Rheumy appointment. The pain & stifness would subside as the day progressed, however mornings became impossibile for me to even get out of bed. I luckily had a Medrol pack (5 day steroid pack) on hand for a bad knee which I needed on hand for an upcoming trip to Patagonia (that had to be cancelled due to PMR). I took my Methyprednisolone (Medrol pack) out of desperation (12mg as the dose I saw on the net) and it worked like a charm. I luckily got to see a Rheumtologist who confirmed my diagnosis and I am on Methyprednisolone now, curently at 12mg (lowered from the original dose of 16 that the Rheumy wanted me on). For me, it is definitely a morning problem and that is only because I am stagnant the entire night. Activity keeps the inflammation down. Although I am doing well on the Methylpred, I have very very slight PMR symptoms each morning when getting out of bed. The slight PMR symptoms disappear within an hour or two of my morning routine.

"proceded to the PCP who would not give me steroids. She wanted the diagnosis from a Rheumatoligist and it was very difficult to get a Rheumy appointment. "

these are exactly the issues that are problematic , and described in many papers where the authors ( usually the European groups) are in favor of FAST TRACK Dx for PMR.

Looking at my calendar with my rheumatologist , we strategized my tapering schedule to hold the dose while on vacation. And beware if you would be approaching 5 mg by May .

I don't think cytokines are "released" at any particular time of day. I try not to quibble with terminology so I know what you are saying. Cytokines are released during inflammation to signal the immune system to fight threats and repair injuries. Cytokines are small proteins that are produced by cells in response to pathogens or other stimuli. I don't think they are released because it is 4 a.m.

What seems more accurate to say is how IL-6 is "regulated." There is an increase in IL-6 levels from the evening, continuing during the night, followed by a drop in the morning. This pattern closely follows circulating cortisol levels which regulate inflammation. The whole process involves the HPA axis and the important function of cortisol to regulate inflammation in order to maintain homeostasis.

Right now I'm enjoying the weather in Florida with highs in the 80's. I will be basking in the sun and swimming today. Back to Iowa reality next week with highs in the 30's and lows in the teens and probably some snow. Florida is nice in the winter but not in the summer.

"I found I had typical symptoms of PMR and proceeded to the PCP who would not give me steroids. She wanted the diagnosis from a Rheumatologist and it was very difficult to get a Rheumy appointment. The pain & stiffness would subside as the day progressed, however mornings became impossible for me to even get out of bed."
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I had the same experience but I had no idea I had PMR. I had a 20 year history of taking Prednisone for other autoimmune conditions but never saw a rheumatologist ever. For that matter, I didn't have my own PCP either. My ophthalmologist prescribed all the Prednisone to me for uveitis. I always had an ample supply of leftover prednisone on hand until I threw it all away. I randomly decided I wouldn't self medicate with Prednisone anymore.

Since, I was unable to get out of bed and independently get dressed, my wife thought it was best that I go to her PCP. Reluctantly, I agreed to go with my wife but she didn't tell me where we were going. My wife went with me so I wouldn't leave out any details.

I thought my wife's PCP was being unreasonable when she wanted me to see a rheumatolgist. I simply said all I needed was a prescription for Prednisone and I would be fine. I told her that I took Prednisone for 20 years and didn't think I needed a rheumatolgist.

My ophthalmologist had no idea I was taking Prednisone for "other reasons" besides uveitis. However, sometimes he asked me how much Prednisone I needed to treat my frequent flares of uveitis. Sometimes I told him that I didn't need any because I had "more than enough" Prednisone at home already.

When PMR was diagnosed by a rheumatologist, I thought the mistake I made was because I had thrown all my Prednisone away.

I had PMR for more than 12 years until I was able to stop taking Prednisone. I have not taken any Prednisone for about 4 years. However, now my rheumatologist insists on prescribing Prednisone to me when I travel just in case I need it!