In 2011 I suddenly developed an ache in my left shoulder, it was not related to any injury. 3 weeks later the whole shoulder was involved and I was feeling very unwell. After 4 weeks it was my back and hips. I was unable to even dress myself. The Dr ran a series of blood tests, one was for the RA factor, which came back negative, but the C- Reactive Protein (inflammation) was 22. plus my haemoglobin count was low.
He concluded that I had PMR (polymyalgia rheumatica) and started me on a course of prednisone, 20 mg decreasing to the lowest manageable level until it had run its course (usually inside of 2 years). It fixed the problem, I was unhappy with the moon face, buffalo hump and weight gain around the middle, but hey I was getting better and would soon be off this contradictory miracle drug. At least I didn’t have RA!
I tried to reduce my dose to below 5 mg but my thighs and hips would flare, sometimes my shoulders too. It was now 2 years on and I was getting desperate. We moved cities, I got through the move on pain killers. I was struggling to walk up and down stairs, get out of the car. I had to give up my weekly yoga class, things were grim to say the least. I found a Dr in my new city of Dunedin, she ran some blood tests and was alarmed to see that the CRP inflammation rate was 44. She concluded that the PMR should have run its course by now and something else was at play here. My Dr sent me to a rheumatologist. I was now quite desperate, my prednisone was 6 mg daily, the RA factor still negative. The rheumatologist concluded that I had RA particularly in the hips and shoulders, she said it had been running alongside the PMR.
Methotrexate was the choice of drug, you all know how that goes! Time for some serious research, I wanted off the prednisone badly. I knew I had to go slowly coming down by 0 .5 mg a month. It was very difficult, but I got there! Methotrexate Monday’s were dreadful, Tuesday no better, I stopped driving on Tuesday’s because I couldn’t trust my judgement, I was nauseous till Friday, came right for the weekend, then it started all over again. My rheumatologist reduced the dose to 15mg, I felt better for it, but by now my liver test results were coming back with raised markers. I had blood tests every fortnight and waited for the phone call from the Dr to say, ‘don’t take your next dose your enzyme count is too high’
There was talk of taking me off methotrexate and trying something different. My joints all ached like crazy, methotrexate had stopped working and was now only doing me harm.
I was running scared, my ankles, wrists, fingers, knees were boggy and felt swollen and weak, I ached all over, hips were sore all the time, I had night fevers, my joints locked up and took some time to loosen up in the mornings. I was asking for help with jar lids, I started dropping things, I was feeling panicky about my future. I was 61, I felt 81.
Christmas 2015 I found the Road Back Foundation web site, brought the book and read it over the break. I knew this was the path for me, I connected my RA with having had a long running infected, compacted wisdom tooth for many years before oral surgery eliminated it. I booked an appointment with my GP in the new year. I wrote her a note outlining the key elements to AP. I wanted to discuss the concept of minocycline for my RA. I didn’t want to blind side her or waste appointment time explaining.
It was the best thing to do because she had never heard of it and it gave her the chance to speak to my rheumatologist and get her opinion. I was very nervous that I would be talked out of it but I was also equally determined to trial it for 6 months. After all I had managed to get myself off long term prednisone when they said it couldn’t be done.
I came away with my minocycline prescription, however my rheumatologist wanted me to stay on 10mg of methotrexate as well. I started on 50mg of minocycline every day for 3 weeks, then 100mg M.W.F. I took probiotics on the alternate days of minocycline.
2 months in I became very determined to get off methotrexate, I reduced down to 7.5mg a week and still my liver tests were elevated, so I just stopped. Nothing happened. I didn’t get worse, in fact I got better. The first sign of recovery was about 3 – 4 months in. My ankles were moving freely. My wrists were stronger. Hips, knees and shoulders still achy and sore, particularly at night or after sitting. I had a very noticeable increase in my energy levels.
6 months in my Dr and rheumatologist were thrilled and also incredulous at how well I was doing, but their mantra was ” it’s working for you, but it is not for everyone” well I say everyone should at least try it!
I feel that I am now in remission. I am now able to do all my yoga, garden, knit, play bowls, walk up and down hills. No pain on rising from sitting. I have occasional stiffness in my hip and/or fingers during the night, but stretching relieves it. I take panadol 2-3 x a week, Naproxen occasionally if required.
Thank you Dr Brown you were a genius.