We've been back from Blighty 4 days now. I had a massive vertigo attack early hours of the day we flew home. It has gradually receded and is just around for a few hours in the morning.
I am on 13mg of Pred and have been for 4+ weeks, have another blood test tomorrow and have picked up my px for Methotrexate. I am really not wanting to take this drug and am wondering whether to see tomorrows results and drop down to 12mg at the weekend and see how it goes this time. I can add in the Mtx if 12 is a no goer.
I read a PMRpro from 3 years ago which suggested there is no evidence that Mtx works and I really am not interested in ingesting yet more crap into my system. I take no other drugs, just the Pred and want to keep that was as long as possible.
What are your thoughts?
Written by
IdasMum
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IdasMum, if you do decide not to start the MTX and try a steroid reduction over the weekend, then, depending on the results of the blood test, how about trying 12.5 rather than 12mg - that tiny half mg can, believe it or not, make all the difference. Hope "Blighty" was enjoyable!
(It did help reduce dose - it did NOT reduce the incidence of pred-related side effects. So why bother adding another layer of side effects? They also found that a third of patients required pred for 6 years at least.)
My own personal opinion is that it is probably worth trying 1) to see if you have any side effects and if you do, say no thank you and 2) if it does help.
I suspect that often when it works it is because the patient was misdiagnosed in the first place and has LORA (late onset RA) not PMR, they can be almost identical in onset and there is no definitive test. You can have both at the same time. I do know a few people who take it, have no problems at all and find it has helped them. But you only know if you try.
Tx for your responses Celtic and PMRpro ...I am very cowardly about feeling ill and see all the side effects people mention and run away. I'll go for a .5mg reduction from tomorrrow and see how that goes and hold the Mtx for another week or 2.
Those of you who have seen posts from me before would know that I have been on a rapid reduction programme that most would think far too fast. So far I have not had any real set backs but have had pauses in my reductions when I thought my situation demanded it. I had a a scan recently when I was down to 7mg of pred which showed no inflamation in my underarm arteries but still slight distortion in my temporal ones. The professor thinks that the Methotraxate is helping this and, since I do not seem to be having adverse side effects, has increased my doseage from 20 to 25 mg. At the same time he has asked me to bring my reduction period down to 3 weeks per mg!. I have started on the new regime bu waited a few weeks for the increased Methotraxate dose to kick in. Have amanded his proposal s;ightly to work on a 5 day cycle (1 in 5 at lower dose followed by 2 in 5, 3 in 5 etc until full 5 days at lower level) giving 25 days before next reduction. I will let the forum know how this experiment progresses.
So for me Methotraxate seems to work but as everyone on this orum knows we are all different as well as our reactions being unpredictable and different at different times.
After posting last night and Celtic's suggestion I am going to alternate 13/12 for a week or so and see how that works. If it goes okay will move into slow taper.
Can't cut my 1mgs and can only get 5's and 1's here.
We have pill cutters available from pharmacies here in the UK. I agree, even with those it isn't always an exact science cutting them in half but if you have a small half one day and the other larger half the next day, you have had the required dose over the two days. Well, that's what I used to tell myself at the time!
You are after all trying to reduce - as long as it is less than 1 whole mg it doesn't REALLY matter whether it is 0.505 one day and 0.495 the next. It is ABOUT half way there...
Okay...have removed my dumb head and replaced it with my head which can calculate.
My 5mg tablets have a cutting line. I was talking about cutting a 1mg in half. 2 and a half 5's make 12.5 So, am on 12.5 for now unless my dr says no when I see him for new px.
I haven't seen GP since and haven't needed a new px. Have found old stash of 20 mg which I am cutting in half. Still not taking Methotrexate and feeling okay on 12.5. Reduced to 12 yesterday.
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