PMR and Fatigue. Interesting study

That fits me to a tee. My rheumatologist didn't say I couldn't have PMR for the rest of my life. He said being on Prednisone for the rest of my life would be a bad outcome. After more than 30 years of Prednisone I could write a book about the ramifications of being on Prednisone.

The first 15 years of intermittent high dose Prednisone followed by a fast taper weren't so bad except for early onset cataracts. That is why I try to stress that short term use of Prednisone as a "bridge" to a better treatment option might be okay.

After PMR was diagnosed, Prednisone was said to be the "only option" and I would need to take Prednisone "long term." That was when my overall health really deteriorated. I will say Prednisone alleviated most of the pain though.

@dadcue
Your doing great, Dadcue. I know how hard it is to control your intake of healthy and unhealthy food, especially carbs. I’m a carbohydrate addict!
I don’t know if weight loss would work as much for me— I’m 4 ft 10 inches tall and weigh 120 pounds—a lot of it in the stomach area. Probably could lose 20 pounds of stomach fat! So I do have classic metabolic syndrome as a contributing factor!
You keep up the good work! I do understand your need to now want to wean yourself off the Actemra! Have you brought this up with your doctor? It does seem like you have been on it long enough! Are your adrenals producing enough cortisol?

Thank-you for saying that. I think I'm doing "reasonably well" but I wouldn't go so far as saying great.

My endocrinologist says there isn't any need to check my cortisol level anymore. There isn't anything that can be done for Prednisone induced adrenal insufficiency except for staying off Prednisone for a long time. I have been off Prednisone for more than 3 years and my symptoms are not consistent with adrenal insufficiency anymore.

My endocrinologist says metabolic syndrome is a more difficult problem to address. Diet and exercise are the best interventions so I'm being encouraged to keep doing what I'm doing.

I have talked to my rheumatologist about stopping Actemra. He doesn't think that is a good idea. Actemra was stopped when uveitis resurfaced almost as soon as I tapered off Prednisone the first time. Then PMR resurfaced when I was off Actemra. My rheumatologist said that was the problem with multiple autoimmune disorders. It becomes difficult to optimally treat everything.

Actemra was stopped a second time during Covid because of supply chain problems. I switched to Humira which was "optimal treatment" for uveitis and reactive arthritis. Unfortunately, PMR symptoms returned that time too. I needed 15 mg of Prednisone again along with Humira. I also developed a synovial cyst in my lumbar spine which was caused by inflammation.

When Humira was stopped, I was ultimately switched to a monthly infusion of Actemra to better control my dose. The synovial cyst went away. Actemra infusions have worked for everything with no need for Prednisone.

My most recent attempt to go 7 weeks between Actemra infusions didn't go so well. My inflammation markers rose with more pain and stiffness. My rhematologist thinks my problems stem from "immune system memory" for attacking things it shouldn't attack.

I used to be 6 ft 3 in tall and used to weigh 225 pounds before PMR and Prednisone. My weight was "muscle weight" instead of adipose. I needed 40 mg of Prednisone to start with and I was still on 30 mg after 5 years. I gained about 15 pounds every year for the first 5 years and peaked out at 300 pounds. It was all belly fat. I had skinny arms and legs and no butt because of muscle loss.

I'm down to 260 pounds now. People say I have lost weight. I'm shooting for 250 pounds because at that weight people said I didn't look fat. I knew I was overweight at 250 pounds but nobody noticed. I guess I had a large frame and carried the excess weight well.

Even my large frame seems smaller at 70 years old -- more like 6 ft 0 inches presently. I'm hunched over because it hurts to stand up straight when I walk any distance. I use a rollator if I need to walk very far or I need to stand up for a long time. Gravity tends to work against me so I aquacise in the swimming pool. I can do aquacise for hours so my endurance has improved. The water resistance has helped my muscle tone too.

I don't think I have bone loss because my DEXA scans are abnormally high for my age. My rheumatologist says my DEXA scans aren't that reliable because of arthritis. He says the excess bone is arthritic bone and probably not dense bone.

Since my recent PMR/Prednisone episode is trying to take over my life, I was prescribed a visit to a dietician. Although I thought my wife and I ate healthy, and avoid red meats, discovered many ways to improve the daily diet. I base ours on the majority of a Mediterranean/Diabetic type diet. The most important topic I was informed of by the dietician was "No Naked Carbs" , meaning every time you ingest carbs, must be accompanied by a Protein. There are tons of small portion/high proteins out there like Chia or Hemp heart Seeds to sprinkle on your oatmeal or salads, etc, for one example. These seeds also lower blood sugars and pressure. A Low Fat Mozzarella cheese stick is a good snack to go with some whole grain crackers for those hunger strikes or carrots as a carb, almonds or walnuts? My wife & I noticed on the third day a large change of feeling good as compared to the prior diet habits. If you choose a good diet, high in Proteins, low in carbs, No Sugars (10gr or less per day), higher Omega 3 fats, moderate intake of Turmeric; you will feel better and keep that as a habit. This helps, but is does not cure or alleviate the Prednisone/PMR topic. As a group, we need all the help we can get, to overcome the Prednisone intake side effects. Best Wishes.

In Europe, the incidence of PMR is less the closer to the Mediterranean people are. Maybe diet has something to do with it.

Then again, maybe they don't really know how to diagnose PMR in places like Italy.

"As the Italian case highlighted, a different epidemiological perspective seems mandatory."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6780278/
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The more I read about PMR/GCA, the less I know what is true and what isn't true. I just take the position that I know nothing.

My original autoimmune problem was diagnosed 35 years ago. That problem was said to be genetic. I liked that excuse for my autoimmune difficulties.

I have learned about S.A.D. --- Standard American Diet. Our diet probably explains a lot of things about the obesity epidemic in the USA. I didn't know white adipose tissue (WAT) adds to inflammation but Prednisone deposited the adipose tissue on my belly. I didn't have that much fat there before PMR and Prednisone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6179510/#:~:text=White%20adipose%20tissue%20(WAT)%20is,while%20exercise%20mitigates%20WAT%20inflammation.
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On a happier note, I do believe diet has a lot to do with it. I'm trying to improve that area of my life. I just have a short attention span for anything related to eating. Half my mouth is numb so I don't particularly like the taste of anything. The texture of food is also a problem for me when I put it into my mouth. Lettuce is like paper. I avoid nuts and things that crunch because pieces get lost and I don't know where they are in my mouth. Mushy food is good for me and something sweet still registers in my brain.

My numb mouth and numb tongue was a complication from trigeminal neuralgia surgery. I used to get an electric shock when I tried to eat something so numb is better.

"Trigeminal neuralgia symptoms may include one or more of these patterns: Episodes of intense shooting or jabbing pain that may feel like an electric shock. Sudden episodes of pain or pain triggered by touching the face, chewing, speaking or brushing your teeth."
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=Branches%20of%20the%20trigeminal%20nerve,-Trigeminal%20neuralgia%20results&text=Trigeminal%20neuralgia%20symptoms%20may%20include,speaking%20or%20brushing%20your%20teeth.
Trigeminal neuralgia was my deterrent from eating too much of anything. I could sneak mushy stuff past my mouth if I put it in and swallowed quickly without chewing.

Sorry for your added complications during eating. Eating is necessary and often enjoyable if the food is right. I lived in Italy and attended 5th grade in 1958; First in Florence, finally in Ancona. I remember nobody ever being ill or sick there, not dentist visits and no heart attacks, no stress. No refrigerators, air conditioning, not much for heating, no grocery stores, strictly the huge street market place for every need. All foods were as natural as could be, probably labeled "Organic" today? Open air meat markets, meat hanging, Fish on Fridays.
For the Diet cause issue; they claim 80% of the Cancers originate in your gut. Perhaps one day we will learn the real reasons for illnesses? Red Meat, or chemical preservatives, environmental air content, public water supplies or?

@dadcue
I lost a few inches due to spontaneous spinal fractures with kyphosis because of osteoporosis. I used to be 5 feet tall!!!
My husband cannot stand up straight anymore, either! For the last year and a half he is really hunched over and can’t walk very far without pain. It bothers me cause he is stubborn and spends too much time lying or sitting on couch when I’m trying to get him up and walking more. He had physical therapy for awhile which seemed to help and then his sessions ran out. I told him to tell his doctor that they were working and that he needs more PT! My husband uses a electric scooter that he can take apart and put in the trunk of our car, when he has to do a lot of walking.
We have also thought about joining a gym or the ymca with a pool so that we can both get some water exercise. We both failed our bone density scans! 🥲
Sounds like you may be on Actemra whether you like it or not—at least it seems better then prednisone!!
Only good thoughts for your continued health journey!