trying to start a pred taper

[Gaz227]

I’ve been on 4.5mg pred for a few months now , I’m also on MTX , I tried to use it as a sparing drug at first but quickly released that wasn’t going to work as I have a form of RA which means I need the MTX , I got down maybe 1 more mg but that was it . I was on 10mg MTX the Rheumy said I have to increase the MTX to get any lower which makes a little sense . I went on to 12.5mg MTX gave it a few weeks then yesterday tried a half mg reduction of pred to 4mg , by late afternoon I completely seized up , pain in all my joints muscles tight upset stomach . I can’t believe that in such a short period of time and such a tiny amount of pred I would end up in such a state . Back on 4.5 mg pred this morning . I’m so disillusioned , I saw Rod Hughes Rheumy in Surrey about 4 years ago as a one off consultation and he said I would probably be on approx 5mg of Pred for life . I have constantly tried to prove him wrong but after yesterday’s fiasco I think he may be correct if I wish to continue my activities . Anyone else got to a point where they think tapering is just a waste of time and to just accept what could be the inevitable, if I was on 1 or 2mg that probably would be acceptable but is 4.5mg to much ? I feel really disheartened at this present moment in time . 😩

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are disheartened at your current situation, but there seem to have been a few comments recently about patients staying at around 5mg.

And if that level gives you a good QOL -then maybe go with it. You may find you can get lower in time, but for now accept that’s it’s “your” level.

[Gaz227 in reply to DorsetLady]

Thanks for the reply , I kind of know this but I am very stubborn when it comes to people telling me I can’t do something . It’s the competitor in me lol . It’s only 6 hours since this morning 4.5mg pred and I am feeling a lot better already , such a small amount extra it’s crazy , I’m pushing my Rheumy to get some adrenal tests done , I told him if my adrenals after 9 years of pred just aren’t up to it any more by doing the necessary tests at least I will know where I stand and won’t be banging my head off the wall every time I fail to reduce , they keep telling me the old reduce by 0.5mg a month, you think by now with all the patient feed back they would change the approach to tapering at lower levels of pred , or maybe get the pharmaceutical companies to produce a 0.25 tablet 🤞who knows it might happen in our time . Thanks again 👍

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

It’s only 6 hours since this morning 4.5mg pred and I am feeling a lot better already , such a small amount extra it’s crazy

Actually many know that a small amount really does make a big difference, it’s a pity that some doctors don’t appreciate that.

Do what you can, but don’t beat yourself up if things don’t go as smoothly as you’d like.

[Bcol in reply to Gaz227]

If you want 0.25mg you could get some 2.5mg tablets and cut them in half which would give you 1.25mg to work with. I'm also wondering if you forget worrying about being "told what to do" as its irrelevant, and, you stop stressing/worrying about dropping lower and happily accept that at the moment 5.0mg works for your QOL, with no dire side effects, then the drop, when you try it in a few months time may be a lot easier to accomplish.

[Gaz227 in reply to Bcol]

👍

[PMRpro Ambassador]

If 5mg is what you need to function well - then it is not too much. Quality of life is more important than the dose you need to achieve it. Until I went on Actemra, I needed well over 10mg to be functional, for a while it was nearly 20mg.

A more usual MTX dose for rheumatology is 20mg. And it doesn't work at all for quite a few patients, especially for PMR.

[Gaz227 in reply to PMRpro]

The Rheumy wanted me on a higher dose of MTX but I chose to only move up in 2.5mg increment's, started on 7.5, 10 now on 12.5mg , I thought I would build it up slowly to try and find my lowest level when the RA symptoms where controlled .

[PMRpro Ambassador in reply to Gaz227]

But at those levels for so long it takes longer for the impact to build up - it can take 6 months anyway. I fully agree don't start at 20mg straight away - but trying 10, 15 and then 20 makes more sense really.

[Gaz227 in reply to PMRpro]

Thanks 👍

[Gaz227 in reply to PMRpro]

Have you got a link to the dead slow tapering system please ?

[PMRpro Ambassador in reply to Gaz227]

It is under Tapering in the FAQs

[Gaz227 in reply to PMRpro]

Thank you 👍

[Sharitone]

I've been told I probably won't get below 3mg. But so far, I always get stuck at 3.75!

If you're really keen to get lower, how about eventually trying for 4.25? Might cheer you up a bit if you manage it!

[Gaz227 in reply to Sharitone]

Yes I think 4.25 mg might be a good option to try , 👍

[Rynn33]

It may be worth upping the MTX as others have mentioned. I was put on 15 mg MTX for about 8 weeks before starting the taper. Not sure how you’re doing the 0.5mg tablet-wise. In my case the 0.5mg decrease is done as an alternate day approach- one day 5mg then next day 4mg and then back up to 5mg. It seems to be working as I get back up to my “happy” dose every second day. It might be worth a try but given the severity of you reaction to the decrease ( unless that was particularly strong steroid withdrawal response ) a day at 3.5mg / then 4.5mg might be too debilitating.

[Gaz227 in reply to Rynn33]

The taper I tried was literally the first day just 0.5 mg and it completely knocked me off my feet , going for 0.25 reduction next time see if I can tolerate that 👍

[springeramber]

Hi Gaz227

I was told by rheumatologist that I could stay on 5mg as I had no success reducing below 3 and at 80 I valued myQOL - I have had ago at very slow reduction in the hope I could get lowe with no ill effects- I went to 4 .5 (halving a one - after a few months went to 4 . Now after a few more months going to 3.5 (2.5 plus1) and will stay there for a few months. All good so far - not too bothered if I have to go back but I would prefer to stay on a lower dose so will hopefully get to 3 and stay there

All the best

Might

[Gaz227 in reply to springeramber]

Sounds like you have a good plan in place , thanks for sharing the info and good luck with the taper 🤞👍

[Gimme]

I remember what my GP said when we talked about tapering pred, after I had been on 5 mg for several months. She said that just because, the rheumatologist wants me off pred, and that she and I also want me off it, my body may well have other ideas. I took that to mean that she was warning me that it might not all go to plan. If there is anything that I have learned from my PMR journey it is that, you have to listen to your body and act in response to that, for all aspects of managing this illness.

[AshPen9]

I don't have PMR, Gaz227, I have another auto-immune condition. My rheumy says that I may well be on 5mg for life. I tried to drop to 4mg very slowly last year over 6 months. It didn't work, but I'm going to try again. He said wait 12 months before trying. I'll try a very slow drop to 4.5mg next time. If that doesn't work, I'm guessing that he'll say just stay at 5mg. I think I'll probably want to keep trying, but the trouble with that is that every time you have a flare it's harder to get back under control. Like you, I don't really want to give up, but as others have said, it's quality of life that really matters. Both of us might eventually have to go with the flow!

[Gaz227 in reply to AshPen9]

Yes, it’s sounds like we are both in the same boat . I’m going to have another go only 0.25 taper , my current 2.5mg tablets are coated ones so I can’t cut them but as soon as I manage to get in touch with the GP which could be weeks with the current surgery situation I will get some normal ones ordered , good luck 🤞👍