Weaning off of all medicine - prednisone and methotrexate

The 7 mg barrier strikes again. That might be caused by adrenal insufficiency.

Methotrexate (MTX) is usually the first "steroid sparing" medication that rheumatologists like to try to decrease prednisone use. I took MTX for more than a year until my liver enzymes were elevated and then I started retching every morning. I called my retching "morning sickness." My rheumatologist didn't think I was serious and she insisted MTX was working for me. She was "disappointed" that I stopped taking MTX and she wanted me to restart MTX after my liver enzymes improved.

I tried MTX a second time but I would retch as soon as I attempted to put it into my mouth. I don't think my rheumatologist believed that I had an aversion to MTX either. She said she could prescribe something for nausea. She eventually gave up on me ever taking MTX again and documented that I didn't tolerate it.

My thought would be to try MTX because it works for some people. It probably worked for me to a certain extent because I did decrease my Prednisone dose somewhat. I just couldn't tolerate the retching but most people don't seem to have that problem on low dose MTX.

I tried a couple more "steroid sparing" medications after MTX was tried and I had mixed results. I wasn't able to get off Prednisone until a biologic called Acterma (tocilizumab) was tried.

My 7 mg barrier was probably the beginnings of symptoms of adrenal insufficiency and the the resulting flare of PMR. Actemra allowed me to get past the 7 mg barrier because it controlled PMR while allowing me to taper down to 3 mg of Prednisone.

I had to stay on 3 mg of Prednisone until my low cortisol level improved. Once my adrenals started to produce more cortisol, an endocrinologist said I could simply discontinue Prednisone. An endocrinologist collaborated with my rheumatologist to make sure I didn't need Prednisone anymore to control PMR. I wasn't having any PMR symptoms so I certain PMR was being controlled.

Actemra didn't suppress my adrenal function so adrenal insufficiency was dealt with too. I had to get off Prednisone to completely overcome secondary adrenal insufficiency from long term Prednisone use.

Sorry to read this. I know what you mean. I was diagnosed May 2023, was initially prescribed too low a dosage of prednisone, and could not get out of bed without help 2 weeks later. Dosage was increased, which eliminated the pain for a long time, until I was down to about 3 mg this past February. My doc started me on 15 mg weekly methotrexate at that point, and I've now been off prednisone for about 6 weeks, but he said I'll likely need to stay on methotrexate for at least another year, probably for the concerns you mentioned. I'm glad to be off prednisone, but still feel fatigued often, but for me it has been a fair trade, to be without the flare pain. I had a bone density test yesterday, to see if being on prednisone for 15 months caused notable issues with my bone density. I'm hoping that since I'm slightly young for having PMR (53) that maybe it didn't cause notable damage, but we'll see!

I hope that you get off the prednisone soon! For me, the methotrexate seems to have worked, and I hope it does the same for you. I really hate being on meds, but it is good to be off the prednisone.

I'm with you. 74 y.o. male with pmr for 34 Mos. Prednisone relapsed 3 times. Stuck at 7.5 mg so MD added mtx 1 month of 10mg per week then increase to 15 mg last 6 weeks. I started very slow weening dropping o.5 mg of prednisone per week. Also split dose am biggest, supper same or smaller and midnight 1 mg.
This really slowed morning pain and stiffness. I also started keto diet 5 weeks ago. Diet has been shown to decrease inflammation and lessen or cure autoimmune disease. Pmr won't kill you but steroids will. HBP, high glucose and possibly adrenal insufficiency or failure. Don't know if this helps but this is the road I'm on.

I have been longing to get off the meds for many months. Currently at 3.25mg Prednisone and 'stuck' also tried Methotrexate and couldn't tolerate it. On 300mg Plaquinil which helped me get from 7mg Pred to 3.25mg but doesn't seem to be helping anymore and may be causing dizziness. My GP is now suspecting the Plaquinil might be giving me cardiac side effects...feels like a no win situation sometimes. Is it better to take your chances with the background inflammation or roll the dice on the horrid side effects of medication. I know which way I'm leaning but as a former RN I am very sceptical about traditional medicine.

I am 75 yo male. I was diagnosed with PMR about a year ago . I had several flairs untill I started methotrexate 15mg about 4 months ago. I have been able to reduce from 20 mg of Prednisone to 6 presently
With no flairs. I am also playing pickleball 2-3 times weekly.

Thanks to you all. It is just so disconcerting. Any concerns from your docs about the inflammation effecting other systems?

I'm a retired pharmacist but medical care in the usa has deteriorated a lot in the last few decades. Hospitals and drug manufacturers run by mbs's instead of medical people advancing is the biggest problem in my opinion.
I think your problem as mine is best addressed by very slow tapering. I'm beginning to think the body is causing symptoms from steroid withdrawal as much as pmr.

My Rheum tells me that the inflammation and pain from PMR is NOT a sign of damage occuring in the body and that Prednisone will do me more harm than the PMR. Her agenda is to get me to take strong immunosuppressive medication to replace Prednisone, this is something I'm not willing to do because I know it will make me a lot sicker. Your Rheumatologist is taking a similar approach by scaring you about the inflammation in order to get you to take Methotrexate or Leflunomide. I would love to know how many Doctors would be willing to take these drugs themselves !!! I have read a number of research papers that indicate long term inflammation has very damaging effects on the cardiovascular system so it has to be controlled somehow but the current medications are pretty terrible. The Doctors advice is a guide and you need them for prescribing when necessary but do your own research and make up your own mind what you think you need.

We are seeing the same thing here in Australia, we used to have a world class health care system but it has gone to hell in the last 10 years and deteriorated much faster after the Pandemic started. Medical professionals are saying they have no faith in the integrity of the health care sytem and are leaving the profession in large numbers, hospitals can't cope and medical error is rife. In Queensland, where I live, the health care system has been seriously underfunded for decades, population growth has been massive and infrastructure is strained to the limit. Now we have rolling medication shortages to deal with. I am sad for my grandchildren and what they are facing !

Check the net or you tube on carnivore diet or keto diet decreasing inflammation and autoimmune diseases.