Thanks everyone for replies and suggestions after my post last Monday. Saw my GP on Tuesday, we discussed the pain, stiffness and fatigue I was experiencing since tapering off prednisone late last year. She agreed I should start at 20mg day, after bloods for Crp and ESR. The results: Crp 3 and ESR 63. Be interesting to see whether ESR comes down to normal at next blood test.
Took my first dose Tuesday afternoon and when I woke up on Wednesday morning, I did not need the walking stick to propel myself out of bed! My pain in hands, arms and shoulders was much reduced, and has continued reducing over the last 5 days. I have more energy (did some much needed housework) and feel so much more positive this week. I saw my Immunologist yesterday. As well as check ups on my multiple allergies, he always shows interest in my general health. He suggested that if, when I do eventually taper down again, I cannot get below 7.5mg without pain, I should talk to my doctor about methotrexate. Thoughts??
Thank you all for listening and great advice.
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Biba5
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I am taken aback that an IMMUNOLOGIST suggested adding MTX to a relatively low pred dose and one some of the very experienced rheumies I know through research feel is low enough that it is not appropriate to add in another immunosuppressant that isn't guaranteed to get the patient off pred anyway.
I discussed it at length with one at a science meeting some years ago and she was saying that they were getting concerned at the habits of rheumies who often use up to 3 such drugs in parallel when there is absolutely no data on the longterm safety of doing so as there is a potential risk of increasing the risk of various problems including cancers.
That is my rant for the day!!!
You got to zero last year - that doesn't sound like someone who was going to get stuck at 7.5mg even given the speed at which you probably tapered. Had you tapered the last bit more slowly and spent more time at under 5mg it might never have happened. It obviously wasn't far away since you felt the pain very quickly so if you are really lucky you will get down to 7,5mg relatively quickly and will get well under that dose before getting "stuck".
And my opinion? Don't even think about getting stuck at ANY dose, cross the bridge if you ever come to it. This time you are taking a different route, the slow one ...
Doesn't work like that - MTX isn't a replacement for pred in PMR. It MAY allow you to get to a lower dose of pred but it only gets a very small cohort off pred altogether, when it does work it works very well but not for many. If it worked for PMR they would use it and not pred. It doesn't, they don't. And I don't think GPs can initiate MTX anywhere, it is a specialist-only drug.
thank you so much for the link, great reading and resource. I have saved it and when I can afford cartridges I will print out for the family.
Should say that the time difference in answering is because I am in New Zealand. I sometimes post late at night when I cannot sleep, and it is great to wake up to all the very helpful answers.
Will go search amazon for book recommendation. Thanks again. So little known about GCA/PMR here, so most friends and family tend to think "oh another one of those illnesses with initials that mean absolutely nothing". It was the same back in the late 90's when I was diagnosed by a Specialist with FMS. Now many people have FMS so it comes under the umbrella of the Arthritis Foundation and is widely accepted.
Don’t worry about timing.. we are a world-wide community- and I know all about communicating with NZ - my daughter and family live on the South Island. .. so we’re always talking at odd times..😊
Hello Biba5!I hope you continue to make good progess. Isn't pred an amazing med. Don't look too far ahead as it is an unnecessary worry. Just one day at a time. Sending hugs x
I am taking one day at a time now, also pacing myself - tempting to get in garden but it's easy to lose hours out there. Sad to say our current heatwave has killed off many plants. No rain scheduled, and being rural and on tank water I have to just water the tomatoes etc.
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PMR in the abdomen/back/waist area
PMR is back yet again
Is 20mg a lot?
