I was diagnosed exactly 6 months ago. 20mg of prednisone and then 8mg of Medrol were not effective so I was bumped up to 48 mg of Medrol, tapering by 8 mg every 2 days until I got down to 16 mg. After 2 months, I was down to 12 mg and doing okay in terms of pain but very concerned about long term steroid use. My rheumy told me to plan on steroids for a minimum of 1-1.5 years and possibly as much as 3-4 years! I was not going to do that without a fight.

I started seeing a functional medicine doctor in February while at 12 mg. He ran a multitude of tests to determine my gut health, toxic exposure, oxidative stress, mineral levels, vitamin levels, hormones, thyroid, etc. My results showed lots of deficiencies and I've since been taking a multitude of supplements. I've cut out added sugar, cut back on carbs about 90%, on an anti-inflammatory diet and eating more organic than before. I'm also intermittent fasting. My tests showed a need for probiotics, digestive enzymes, Omega 3s, vitamins D3, K2, B's, Glutathione and Alpha lipoic acid and few others. I also started HRT. At my 3 month checkup nd repeat labs with the functional medicine doctor, I had dropped all the steroid weight (12 lbs), had tapered from 12 mg to 3.5 mg Medrol (not without some crazy challenging weeks, dosing up and tapering again). My labs are better in almost all respects. This is day 32 at 3.5 mg and I've been extremely fatigued, lightheaded and weak since around Day 21. Barely able to function. I'm so frustrated because I felt good on 3.5 initially, had a couple of rough days. It's taken me a while to wrap my head around the fact that it's probably the reduced steroids since I have no PMR symptoms - no pain, no stiffness. I hate to, but I guess I'll bump up and see. Time will tell.

I'm doing okay dealing with this beast called PMR at the 6-month mark. BUT I'm not without struggles. How many are due to the steroids vs tapering the steroids vs the disease is so confounding. Currently (it changes week to week, sometimes day to day), my biggest issues are extreme fatigue, skin so thin that I bump into something and bleed, and my hair is falling out like crazy as of about a month ago. I'm overwhelmed by the cost and ritual of taking so many pills, powders, creams and drops. Charting everything to try to determine cause/effect is getting old too. I feel without my functional medicine doctor, I'd be struggling more so I'll keep on doing what I'm doing for now. I truly am grateful that I've come this far but it's still hard to comprehend that this happened in the first place.

Best to all on your journey.