Now adding methotrexate

[Musiclady18]

Well here I am went to the rheumy today, I called to give her update and she said it seems the taper is not working quite as well so she's added methotrexate to try to take care of the PMR. I will also be adding folic acid to take care of that which the methotrexate takes out! I can't believe this journey, seems to be so up and down, I hope this is the beginning of a good thing??? Any words???

[Theziggy]

Hope the methotrexate works for you - it didn't agree with me

[DorsetLady PMRGCAuk volunteer]

Hi

“Well here I am went to the rheumy today, I called to give her update and she said it seems the taper is not working quite as well”

In my opinion the reason it’s not working so well is because it’s been too quick, so you’ve had flares - but as she’s not prepared to acknowledge that and let you follow a sensible tapering plan I guess you have no option but to try MTX.

Good luck with it, it suits some but not everyone - let’s hope you’re in the former group.

[PMRpro Ambassador in reply to DorsetLady]

And I add my support to DL's comments. If you taper the dose too soon, too fast or too far then it won't work.

I hope mtx helps you - but there are no guarantees on it dealing with the PMR, what it certainly does is add a potential extra layer of adverse effects. If it worked reliably for PMR they would use it instead of pred. They don't.

[Musiclady18 in reply to DorsetLady]

She is now thinking it might be RA as well ???? I have had PMR since Nov. 2018 and 1st rheumy had me on crazy tapering ???? This rheumy had left me to figure it out sensibly I think, Dec. 4 mgs. and drop dose every 3 weeks and if needed to go up to 4 mgs. all seem to crash in January when I went down to 3 mgs pain back, feet hurting, hands, wrists, knees, stiffness ??? So I went to 4 mgs, touched base with this forum and the other day I went up to 5 mgs and then called the rheumy just to fill her in.................that was yesterday and that's when she said doesn't seem to be working, my stiffness lasts 'til noon. Seems when I am at school I try to keep moving but I am still stiff??? Thanks for your words and to all who have offered advice, I sure hope once again, the track is the right one....................

[PMRpro Ambassador in reply to Musiclady18]

You have almost certainly overshot the dose YOU need - which is likely to be higher than others simply because you work. Just overdoing it can result in severe stiffness next day - I am having to walk a fair bit at present and the stiffness is off the scale at times - more pred helps ...

[DorsetLady PMRGCAuk volunteer in reply to Musiclady18]

You might be able to reduce every 3 weeks, but not at 1mg a time, how about trying 0.5mg a time?

But as PMRpro says - and we all say the same - you need what YOU need - not what the Rheumy thinks you need.

[Musiclady18 in reply to DorsetLady]

Funny but I asked the rheumy yesterday, as I have read on the forum, about the .5 drop and she said don’t make it so complicated just go down by 1 mg. Once again this forum 8a precious as the dr doesn’t have the pmr, I am starting to think I am trying to make a reasonable decision using the forum and her suggestions?

[DorsetLady PMRGCAuk volunteer in reply to Musiclady18]

Actually she might think it’s complicating things, but really it’s making it more simple - for you’d body and your PMR!

She obviously doesn’t understand the need to reduce slowly once you get to single figures - for PMR and to get your Adrenals going again.

We, as a collective know a lot more about PMR that she’s ever likely to know - unless she gets it herself of course.

[Musiclady18 in reply to DorsetLady]

Thanks Dorset lady and that’s why this site is phenomenal!

[PMRpro Ambassador in reply to Musiclady18]

Experts in tapering - as opposed to reducing, not the same at all - say no reduction step should be more than 10% of the current dose. At 10mg that is 1mg, every mg below that and the % increases. It is very simple arithmetic - and a very simple concept. Yes, there may be some who can do it if they haven't been on pred long or if the dose they need is very low already. But they are a very small minority.

[HeronNS in reply to Musiclady18]

Tapers below 10 mg need to be at least only every four weeks, and as you approach the physiologic does of about 7 or 8 mg probably better only half a mg drop each time. And never proceeding with next taper unless you feel as well at the end as you did at the beginning of that taper.

[Hidden]

Hi Musiclady

I’m someone it worked/works for - please refer to my Profile & scroll down where you’ll find various posts.

MrsN

[Marijo1951]

I'm also somebody who feels that MTX has been useful. I've written a number of posts on the subject which you can look up if you like. However I must add the proviso that my doctors have treated me like an intelligent adult who can be trusted to taper pred slowly as it suits me. This must also be helpful in preventing major flare ups of symptoms. Recently I had a huge increase in shoulder pain when I went down from 6.5 mg to 6 mg, so I went back for the time being to 6.5 mg. I'm not sure where that leaves the MTX argument...

[Musiclady18 in reply to Marijo1951]

Thanks for your reply ! How do I find your other comments, where do I look???

[DorsetLady PMRGCAuk volunteer in reply to Musiclady18]

To look at Marijo1951 profile (or anyone’s you’re interested in) - just tap name at top of reply.

Then scroll through their posts

[Musiclady18 in reply to Marijo1951]

Thanks for your advice! How do I find your other posts???? Where do I locate those on this forum???

[Marijo1951 in reply to Musiclady18]

Actually I've just looked at my posts and realise that most of my comments about MTX have been in response to other people's posts rather than started by me! I'll just tell you that I started on 60 mg pred in July 2017, a high dose because I have GCA as well as PMR. At Christmas that year I flared for the second time when trying to reduce below 25 mg. I was started on 10 mg per week MTX which was increased to 15 mg after a month or two. My folic acid was also increased from one day a week to five days a week. My dosage has remained the same ever since.

I haven't had any severe side effects apart from diarrhoea in the first month which was eased by the increase in folic acid. I recommend taking MTX at night (I set my alarm for 10 p.m. every Friday) When I've taken it during the day, it's knocked me out and I've been on the sofa for the rest of the day.

I think it has been helpful, but I know my doctors' easy-going attitude towards my tapering pred has definitely helped. Also, as I mentioned, I recently increased my dosage from 6 to 6.5 mg because of increased shoulder pain and stiffness which maybe introduces a question mark about MTX's effectiveness. I next see my rheumy at the end of July when I hope to be down to 5 mg. If I have any further bumps along the way, I might suggest that it could be time to finish with the MTX.

[Musiclady18 in reply to Marijo1951]

I see the rheumy in 1 mth so I will fill her in?

Went for bloodwork today anti ccp, which I understand is to help determine if RA. What what learning? And I feel like a whirlwind as well, considering I used to be so flexible and active. Thanks for being on the journey, so much to take in!

[Musiclady18 in reply to Marijo1951]

I am working rheumy suggested Saturday 5 pm ish to take then folic on Sunday, does that sound like a good plan? At school teach8ng and not really able to rush out of class that easily?

[Marijo1951 in reply to Musiclady18]

If that suits you, certainly. I just wouldn't recommend taking it early in the day. By the way I forgot to mention that I have blood tests every month to check that my liver and kidney functions are normal.

[PMRpro Ambassador in reply to Musiclady18]

If you go to Marijo's profile page you can read all her past posts and replies to posts. Just click on her name.

[SheffieldJane]

Just good luck Musiclady18. I hope it works as you hope. Let us know.

[Blearyeyed]

Good luck with it , hope it works well for you.

Give yourself more rest or " Me" time while you get used to it xx