Hi Forum names Robert 63 yr old male short story got diag with Dermamyositis Almost crippled from it through high doses of prednisone which im weaned off now current meds 200 mg Imuran which they give give organ transplant patients so there body doesn’t reject new organ. I have to stay on this med the rest of my life. But recently went to very good dr explained my situation did labs and my T was 100 put me on 200 mg T Cyp and 2mg anastrazole My test is at 908 before injection and free is 19.7 Recent labs revealed a very low T4 Hypothyrdism so now on low dose of levothyroxine. I guess my question is and i do feel 100 percent better am i chasing something with this autoimmune disease or am i on the right track sometimes im confused
This isn’t going to work out in the long run, way too much anastrozole! Eventually your estrogen will become undetectable in the near future and is already low.
Be wary of any doctor that starts you out on aromatase inhibitor right out of the gate without a reason! A lot of doctors are borrowing bodybuilding protocols and applying it to TRT.
In 1997, when I was 48 years old, I was diagnosed with dermatomyositis when my CPK came back over 18,000. I lost 40lbs of muscle in 5 weeks, and not an ounce of fat, but probably gain some fat due to the nutrient partitioning of 64mg of Medrol per day. It proved out that I had polycyclic dermatomyositis, having flare ups whenever my Medrol dropped below 12mg/day. They tried IVIG to no avail. After a few years I got included in a test of rituximab. And took three cycles of treatments. This proved to have stopped dermatomyositis and I have been free of it since 2005.
About this time, since I felt more like a human being, I began to take testosterone cypionate at 100mg every five days. This protocol had my Total Testosterone around the mid-500ng/dL tested in the trough. I take no other hormonal medications.
I got a fair amount of my strength back, though it was rather slow considering how muscle memory typically works.
BTW, I had resisted the doctor prescribing me Imuran or any other “designer” immunosuppressive medication. Medrol seemed to work well enough. Plus me doctor had warned me that these drugs came with an increased risk of cancer.
Also, after about a year (during the polycyclic period of my disease) of listening to the doctor prohibit my lifting weights because my bones would be getting more brittle and being tested with osteopenia, I resumed my use of creatine monohydrate and started lifting light weights (I had become extremely weak that last year.) The doctor noticed that I looked considerably better. A couple years later he had another bone density test done, where my osteopenia had gone away.
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Estrogens, Total 02 54 Low 100 12/21/2023 pg/mL 56-213b these are my current estrogen levels
yeah estrogen at 54 why is he keeping me on anastrozole
Total estrogen is a useless test, because it measures E1, E3 which are weak estrogens and E2 estrogen is the most potent form of estrogen.
The only estrogen you should concern yourself with is E2.
This Total Estrogen testing and the 2 mg anastrozole per week are red flags that your doctor is incompetent!
Is your DM totaly gone My rumatologist told me it will never go away
They took me off atorvastain cohlesterol when i was diagnoised saying they highly suspect statin drugs to be the culprit of myositis who knows
It is gone as best I can tell. I have some concern that it might return. That becomes less every year.
I was never told this. I always had some hope, though it seemed unlikely after a few cycles. The weight lifting was the best thing I did for myself. I cleaned up my diet. Did what I could do, making steady progress of getting stronger.
I had been told that dermatomyositis was an autoimmune disease and that they had no idea how I contracted it. And said that the reason they are called autoimmune disease is because we don’t know why a person gets it and don’t know why they become cured.
My doctor hoped that the suppression of my immune system was a hope that it would reset (as a computer reboot) when the inflammation ceased due to the Medrol.
For what it is worth I was told that the rituximab was more of a precision aimed drug to allow my immune system to reset.
did u experience alot of weight gain with ur DM I went from 220 to300 in te yr i was on prednisone but ive been off for quite some time now i managed to get down to 265. My dr thinks it adrenal belly from being on such high dose of prednisone for over a yr ant experience with that?
I was a competitive bodybuilder. The exact opposite happened to me. Five weeks after taking 80mg/day of prednisone my weight dropped from 240lbs to 200lbs, more was muscle because I got a higher percentage of body fat. My strength tanked beyond imagination.
After I had taken rituximab that allowed me to stop the prednisone (Medrol by then) my weight rose back to a somewhat reasonable looking 215lbs (still a shell of my former self.) I got to about 60% as strong as before DM.
My doctor was most concerned that I try to avoid getting diabetes. Being a competitive bodybuilder I knew what foods were okay and which to avoid and I had all the discipline to do so.
Once you are off the high doses of prednisone you should have better results from your diet. Prednisone highly partitions nutrients to the fat cells. I got a good case of Cushing’s Syndrome that took a few years to improve, but never got my old facial features back.
thank you so much for ur replies, glad u over came this crappie disease there’s not a lot of folks I’ve run across that have DM or PM so its nice to talk and get perspective from someone else ty again
hello Nomad how r ya just and update still on 200 mg test cyp got sick about 2 months ago first time in 2 years since being diag with dermamyositis long story shortt after a week and half of bad sore throat went away and tthen develooped small lump on left side of neck. Fasdtt foward cat scan needle biopsy Small cell squamous cacinoma of cervical lymph node 2nd part of testt came back hpv16 posittve. assuming probaly from immune system being compromised having full pet scan today to make sure no were else in my body tthen tto oncogist in am for resultts and plan foward yikes
My doctor when I was diagnosed with dermatomyositis warned me that cancer was a concern. I resisted the use of additional immune suppressive drugs, and stuck with Medrol only. I would joke with him that he was trying to cure me to death.
Have talked with your doctor about taking rituximab treatments?