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PMR and Fatigue. Interesting study
Polymyalgia Rheumatica (PMR) | Last Active: Sep 27 8:18pm | Replies (18)Comment receiving replies
@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?
Replies to "@dadcue Your doing great, Dadcue. I know how hard it is to control your intake of..."
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.
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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.