Weight, dosage, activity and what happened to my lungs?

Posted by janettec @janettec, Nov 28, 2022

I am one year into the poly-nuisance. For the longest time I have relied upon our medical system that has served me well and I surely have no complaints. I am working with an interested and quite lovely Family Doctor and PMR specialist , however, time is ticking on and I'm still at 25 mgs a day of Prendnison plus now Methatrexate …. and trying to get off the stuff is proving difficult and disappointing. I am good at following directions, and I am not a complainer, but I have failed twice now. The forums and various groups on line have really helped in the past few days to understand that, although what's happening for me is not that common, there are thousands of people just like me across the world for whom reducing dosage is nigh on impossible. For me it has been a case of UP, UP, UP. I simply cannot take 30 mgs a day without a world wide hunt for help.
So … I've got the northern European method of decreasing dose with takes about 40 days for each step …. thank you. I understand that folks who can't reduce dosage easily have to step up and take more each time they fail … and I now know that to tell the difference between steroid withdrawal and PMR … regular over the counter pain killers will remove pain associated to steroid withdrawal, but not PMR.
So I have more questions if anyone can help. My lungs almost stopped working at the onset last November. The first CAT scan showed nodules, which have since gone away. It is not know (yet) if this is connected to the PMR, or if its a reaction to Covid vaccines or what? Also I am very active although Im now 72. I dont run marathons but I am on my feet all day every day … and also fasting intermittently to try to improve my condition of being just too heavy! Prendnisone delivered an extra 30 lbs to my otherwise tiny frame! Does one need more medication if one is busy? Does fasting affect dosage? Did anyone else loose their ability to breath at the onset of PMR. Thank you so much for any insights.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@janettec, Me thinks that PMR is not just a mere poly-nuisance but more of a get thee away from me now type of condition 🙃. There are no easy answers which I think has a lot to do with each of us being affected differently by PMR pain. My breathing was not affected in either of my two occurrences of PMR. I had a lot of weight gain the first time around so when the PMR came back six years after it went away the first time, I made some lifestyle changes to keep the weight at a minimum. I still struggled a little with the weight gain but I was able to keep it between 5 and 10 pounds instead of 35 to 40 like the first time. There is a discussion that might be helpful if you haven't already seen it:
— PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/

My own personal opinion is that one doesn't need additional medication when they are busy. The flip side of that is each of us needs to figure out how much activity is too much and not overdo it. Too much exercise or activity would definitely cause an uptick in my soreness/aches the following day until my next prednisone dose kicked in.

Fasting, one of my favorite topics! My wife got me hooked on intermittent fasting and now I pretty much use a 8, 6 or 4 hour eating window each day depending on what my family activities are. I use the Zero app to keep track of when my eating window is. I can set it for an 18 hour fast/6 hour eating window or a 16/8 or 20/4. The app on the phone makes it easy to manage – https://www.zerolongevity.com/. I just use the free version. It has definitely helped me lose and maintain weight.

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I finally realized that I had other health issues that were not from PMR. I finally have addressed the back and foot issues that were not PMR. I think the prednisone was high enough at the beginning that it masked my back, neck, and foot issues. As I have tapered down to 5 mg of prednisone, I have had to have steroid injections for my back and foot problems. I had mild lung problems before PMR. Now that I have realized that all my pain and discomfort was not PMR, I realize that what I thought was PMR flare ups were actually my other health issues. I am 77. Everything needs to be done in moderation-food and physical activity.

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Jannettec, I want you to look at MSM to use with your other stuff you no doubt try. It does down regulate IL6 (the cytokine implicated in PMR). I take 3 grams a morning (there is no know toxicy) and lots of research about it on line. I am convinced it has kept me from relapsing during some difficult events. Research then give it a try.

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@suetex

Jannettec, I want you to look at MSM to use with your other stuff you no doubt try. It does down regulate IL6 (the cytokine implicated in PMR). I take 3 grams a morning (there is no know toxicy) and lots of research about it on line. I am convinced it has kept me from relapsing during some difficult events. Research then give it a try.

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Thank you- but what is MSM?

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It is a suppliment that provides sulfur to the body. I don't know why it makes a difference, but it does. It is a good anti-inflamatory and is good for artheritis in general. I have used it for years for lame horses and dogs and seen it work. Anyway, I encourage you to do your own research. I start my day with it.

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