I finally came off Pred. in April 2020 after starting it in 2018.Despite having had a second opinion (a bias towards Lupus) it was never absolutely confirmed that I had PMR/GCA as I had another immune system problem, (Lichen sclerosis) I believe my steroid treatment -first time -was the cause of a softening of the tendons so that I now have to cope with 3 out of 4 of the tendons of my left shoulder are now ruptured and broken and the other side not going so well.
I think I am having a 'flare'. Same old brain swelling feeling, terrible stiffness everywhere and all the usual side effects I got from steroids. I don't want to go back on steroids they give me panic attacks apart from all the rest. My GP is sensible and listens to what I say but getting to actually see/speak to her takes for ever and I imagine getting an appointment with the Rheumy dept , who have been no real help, will be for months and months ahead. Is methotrexate at base a steroid if I end up having to take something again?
Can I say how reassuring it is to return to the site and find that all the helping names remain the same, giving wise advice , cheering people on even though you all seem to have problems of your own. Thank you so much for such a splendid site long may it continue.
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ragdollcat4
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No, MTX is a DMARD, a disease modifying anti-rheumatic drug. Not a steroid - but also rarely an answer to PMR on its own, it is mostly used together with pred. If it really did work for PMR - they'd use it. MTX sometimes potentiates the effect of pred so you get a greater effect from the same dose. In some people it seems to calm the immune system down and makes reduction a bit easier but the only way to find out if it helps for you is to try it. But you will have to see a rheumy to get it - GPs aren't allowed to initiate it, just provide ongoing scripts in response to good lab results - liver function must be closely monitored and there are other adverse effects to watch out for too.
Thank you for giving me your advice which is useful. I have set up a phone call to my GP to start again on the endless round of pills and waiting, and visits etc, so ....on we go! My thanks.
Hello ragdollcat4, so sorry that this has happened. You may find that this time round you don’t have panic attacks with Prednisalone. The first time you take them is such a weird shock and that can be the trigger for a panic attack reaction. You could consider gastric resistant Prednisalone and take them at bedtime. You may find that you are less aware of side effects, I find that this works for me. Obviously, a low carb diet avoids the inevitable weight gain. PMRPro recommended an 800 recipe book endorsed by Dr Michel Moseley and available on Amazon. They really are delicious recipes, no sense of deprivation at all. Others who are experiencing Tendonitis will hopefully be able to advise you. The sooner you bite the bullet the better. As you know GCA needs to be treated with the utmost urgency. I would be inclined to go to A&E to have this checked out rather than risk visual impairment. Let us know how you get on.
Many thanks for your reply. I suspect I will be going the Pred route in the end again. Luckily I don't put on weight, except for chipmunk cheeks, and have enjoyed Dr.Moseley's diet and fitness regimes. I really thought I was through it all ! Thanks again.
Hi ragdollcat4I’m really sorry that I can’t help you, my rheumy advised me to have Methotrexate but when I saw the pharmacist at the hospital I came away feeling that I didn’t want to take it. I contacted my rheumy and explained that I would rather proceed with PMRpro’s DSNS method of reducing and he agreed, and after 6.5 years ( from first contracting PMRGCA) I am now on a 2 mg maintenance dose and feeling quite good except for other health problems.
Thank for your reply. I have set up a phone meeting with my GP and I'm pretty sure I will end up going own the Pred route. It is so depressing to have to start all over again with the pills, the waiting,the visits and knowing there is no clear path forward etc. Onward - ever onward.
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