Well, yesterday was the appointment with my Rheumy which because of my first consultation going so badly, I held out no great hope for as he had talked over me, ignored me and generally treated me like c**p.
So off I drove, after having the worst fortnight of flares for months. I still had 5 active flares so was taking the driving easy. When I left the hospital I had 2 more flares and all were getting quite aggressive so I only just made it home.
As you may or may not know, since June of 2018, I was being treated for Polymyagia Rheumatica (PMR) with steroids, but finally having gotten down to 7 mg in late June I have had a lot of quite debilitating flares.
So, in I went to the Dragon's Den, and before he could pen his mouth I told him how angry I had been after my last consultation and explained why. He asked whether I wanted to change consultants, but after a bit of conversation I think the air was cleared and we began our consultation proper.
He asked about my present flares, and I explained how I had researched my condition ( with the help of you good folks), and was sure I had Palindromic Rheumatism (PR) and outlined my reasons for this conclusion. Then lo and behold, he agreed with me and asked whether I was willing to try methotrexate and I said I was.
Then he made we stay there whilst he dictated his notes into an dictaphone ( I was amazed by this as I had never witnessed a consultant taking voice notes about me in front of me - I think he just wanted to hear how much we had cleared the air and were now a team). He then gave me a break down of my future, I would see the Rheumatologist nurse in 2 months where she would explain the new drug - must be heavy duty stuff! Then I would see him again in four months.
I then got bloods taken and a chest x-ray to gauge whether I could handle the methotrexate. And then with two extra flares on board I just about made it home, took me 5 minutes trying to get the keys out of the car! This morning I have a severe flare in my right groin and walking is very slow and painful - hey ho!
Thanks to all at at PMRGCAUK for all your help and advice - I will still be popping in as you guys are the best place to go to ask questions about tapering.
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Theziggy
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I'm amazed - and very pleased for you! I do hope you get on with methotrexate OK but it will be just the starting point - there are other DMARDs and when they don't work there are biologics.
What have you to wait so long? I was told we'd try methotrexate, blood tests and x-ray done and that was it. Mind you, I didn't need a nurse appointment - he explained and knew I knew about it anyway.
I only took it for 4 weeks - it was supposed to be as a steroid-sparer but at the time I was only on 7mg and the mtx made me feel worse than untreated PMR had as it causes aches and pains! It was the fatigue I experienced that finished me though. Loads of people take it and are fine, the unpleasant effects do usually improve after a couple of months and I would probably have persevered had it been as a DMARD for inflammatory arthritis.
My Rheumy told me it took 4 weeks to kick in and that I would be still taking steroids during these four weeks, though I am sure I will have to taper off them.
Most rheumies say it may take a few months to work well - do hope you are at the good end of the range!!
How long have you been on pred and what dose - you will get down to about 8 without problems since you don't have to consider a PMR flare but it may be a slower taper from there while adrenal function gets going.
I have been on pred since March 2018 and managed to taper (after many attempts) down to 7 when I got 3 flares in succession - lasting 3 days each. So my GP upped me to 15 mg for a week, then 10 mg for a week, and then start the taper again at 8 mg. I made it to the 6th day at 10 mg, and have had numerous flares since Saturday last, and am still flaring. Couldn't walk yesterday. The Rheumy on Monday said he would put me on 15 mg for four weeks. Surely the mtx also knocks out the adrenal gland?
No, mtx has no effect on the adrenals at all - they aren't working because the feedback set-up tells them there is plenty of corticosteroid in the body - they don't care whether it is natural as corticol or artificial as pred and so they don't produce any more. Think central heating boiler and thermostat.
After well over a year at doses above the physiological level you will need to taper the pred slowly to encourage adrenal function to remain - although once the mtx kicks in you can reduce fast to 7 or 8mg before slowing down for the rest.
Well you certainly tamed that dragon! Good for you. I hope that Methotrexate suits you and you experience real relief. The real plus about this drug is that it actually addresses the disease itself in cases of arthritis and not just the symptoms. It can be challenging for some folk it has to be said, but as PMRPro has said there are other drugs you can try, if so, ( with your new best friend). 😆
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