Am I ''better''?: As I mentioned in a previous post... - PMRGCAuk


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Am I ''better''?

Marijo1951 profile image
11 Replies

As I mentioned in a previous post, Storm Eunice badly damaged part of my roof on 18th February. I was homeless for 5 weeks and 5 days, returning last Wednesday. The permanent repair hasn't been done yet, but it is rainproof (as proved in today's very wet weather)

I increased my pred dosage for the first 3 or 4 days, but went back to 3 mg and have since reduced to 2.5 mg with no problems. In fact I'm wondering if I am now well, and free of both GCA and PMR. I'm sure that if the mishap had occurred 2 or 3 years ago, the stress would have made my conditions worse. I spent a few days at my daughter's but then moved to the temporary serviced apartment that was on offer. As I was determined to visit my home every day, I had a daily ''commute'' (train, Tube, bus, then in reverse) which I know would have exhausted me not so long ago, but in fact didn't have much of an effect.

I don't have a hospital appointment until May, as my last appointment in December was cancelled and that was the next one on offer. I have reduced my Methotrexate from 15 mg to 10 mg per week with no ill effects. I'd really like to cut the MTX out entirely, but suppose I shouldn't do this without medical advice. Has anybody else ever stopped taking it without consultation?

11 Replies
123-go profile image

Hi, Marino. First of all, I'm pleased that you've been able to go back to your home and that you've managed to avoid a flare. The chain of events you describe would have had me on my knees!I really wouldn't stop any prescribed medication without speaking to my consultant. If that means waiting until your May appointment, so be it. I don't know much about methotrexate but others with knowledge will be along.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good to hear you’re feeling better…but please don’t stop without checking it out with Rheumy first -any chance of a telephone conversation? But tbh, 2months is not really that long to wait in the great scheme of things.

Marijo1951 profile image
Marijo1951 in reply to DorsetLady

You're right - it isn't very long to wait. For some reason, I still think of the appointment as 6 months away as it was when I was first given it!

PMRpro profile image
PMRproAmbassador in reply to Marijo1951

It was a shock at the weekend when I realised it is Easter in under 2 weeks! And that May appointment that seemed so far away is now next month!

piglette profile image
piglette in reply to PMRpro

First Easter and then it’s Christmas!

PMRpro profile image

I wouldn't stop it yet - you only find out how much it was doing afterwards!

It is pretty likely the underlying disease activity has subsided a lot compared to earlier - but it doesn't mean it is gone altogether, just that you are on enough pred to manage it all. The GCA componenet is probably gone - but PMR can be the tricky part and even 1mg can be plenty to keep things under wraps. I suspect that your adrenal function has been poked into life - and possibly by being stimulated a bit harder than average!

So pleased to hear you are home, even if the work isn't all done. A leaky roof is a pain - we had one: I was sitting at the computer when I felt a drip down the back of my neck! It was a major performance as the ceiling involved turned out to be not simple plaster and had it collapsed it could have killed someone in the room! The ceiling above the adjacent stairwell had been patched with cement!!!!!

borednow profile image

If it was me, I'd be very careful. I managed over the years to get down to 1mg. All went well for a couple of weeks and then it all went a bit pear shaped. So after much experimenting I am now at 2mg, been there for a while (certainly during pandemic) and am only now thinking of starting reducing again. Only thinking about it though!! Really pleased you're back in your home, onwards and upwards and all that.

Marijo1951 profile image
Marijo1951 in reply to borednow

Thanks for your reply. I think I'd be content to stay on a very low dose of pred long-term if necessary. What concerns me more is the methotrexate. I feel I'm taking something that is no longer helpful (though I think it probably was in the past) and that potentially has nasty side effects.

Sharitone profile image

I stopped mtx, originally because of a pharmacy mix-up, when I found that I had fewer tablets left than I should have. I consulted the rheumy nurse who said not to take it for a week just in case I had taken a double dose. One week later there were no adverse effects, so she told me not to take any more until the next rheumy appt in 4 weeks. At that appt, the rheumy said to stop it as it didn't make any difference. So I'm wondering if you could ask a rheumy nurse, if you don't want to wait till May?

Marijo1951 profile image
Marijo1951 in reply to Sharitone

Maybe. It was impossible to speak to a rheumy nurse for a long time after covid began as they were redeployed elsewhere, but I believe they're back now. I certainly feel fine after reducing from 15 mg to 10 mg. I might try a phone call after the weekend when I'll have reduced my dose for 2 weeks. Thanks for the suggestion.

SheffieldJane profile image

Stronger than before! What lovely news. Although we don’t need to taper Methotrexate you do need to tell your doctor. You are doing so well, better not upset the apple cart. I hope you get your home ship shape in no time. What a massive stress test. Wow!

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