PMR reduction using MTX as a steroid sparing drug

[lkcreedon]

A couple weeks ago I posed the question if I could skip a dose of MTX (12th dose) as I was going to a family wedding in Italy and would be partaking in wine and beer to some degree 🤔. I had no relief with the MTX at this point and also on the 12th dose had experienced horrible nausea on the 11th dose. I got the go ahead from my Rhumatoligist. All went really well, skipped the dose with no issues at all. Wedding fab. We had lovely weather (low to mid 20's). I improved, no PMR symptoms and my stiffness from OA. (knees) also improved a bit.

Got back to Ireland last weekend and felt great so decided to drop my pred dose from 10mg to 9mg with no issue. Weather was good as well. I did also take the 12th dose of MTX at the start of the week as well and I intend to take the 13th dose tomorrow morning. I'm seeing my rhumy next Thurs for a review (after 4 mths). Id like to get off the MTX if possible but not sure this will happen. Right now I'm confused as to whether the MTX suddenly kicked in even though I missed a dose for the trip. No issues with the MTX in 12th dose. Today was a very, very wet day so I did experience a twinge high up on my right arm and knees were a bit stiffer again. Basically I'm asking if the warmer weather could have helped my PMR or did the MTX suddenly start to work??

All going well Id hope to continue with the pred at 9mgs for another 3 weeks and then drop to 8 mgs for a month and then slow things down to 7.5mg using the DSNS method and thereafter. Wondering if I'm on the right track?? Guess I won't know till I try 🤔. Tnx in advance 🤗

[Gaz227]

I started on MTX to try and reduce pred , I was only taking 5 mg of pred , been on MTX for 2 years now still on 4.5mg pred so for me it hasn’t worked as I’m now on both drugs . I take 12.5mg injection of MTX once a week , I have a form of inflammatory arthritis now so looks like I’m stuck on both for the forceable future but at least I have good quality of life and no serious side effects up to now from either drug 🤞, good luck with your reduction , for reference stopping MTX for a week or two if you get a bad cold or co-vid won’t hurt , I’m currently on a break from it due to co-vid plan to start back on it next week 👍

[lkcreedon in reply to Gaz227]

Thank you Gaz227. Seems so hard to get off the steroid. If I continue as I am now then it may be worth sticking it on on the MTX for a bit longer to see if it is actually does help. I don't appear to have too much in the line of side effects as of yet either. Great that you are doing well in both and have a good quality of life. That's so important. When I was a young teenager used to laugh at my mom saying 'health is wealth'. I wouldn't laugh now 😊. Continued success to you.

[PMRpro Ambassador]

As you say, you won't know until you try - and the other thing you won't know about is how much difference the MTX is making, You wouldn't be the first to discover that although it didn't feel like it, it was making a considerable difference and without it you needed more pred.

Some people find warm weather makes a big difference - I live in Italy and I don't find temperature makes a lot of difference but rain and, even more so, wind can. This year the weather all over Italy has been much wetter and cooler than usual and to my surprise I can't really say the PMR is worse - but I am on Actemra now, it shouldn't be a problem.

[lkcreedon in reply to PMRpro]

Tnx PMRPro. I will stick with the MTX and hopefully I will reduce the steroids and eventually get off the MTX as well. Interesting about the wind aspect. What is the function of Actemra ? I have not come across it apart from on this site. Tnx again for your response 🤗

[PMRpro Ambassador in reply to lkcreedon]

Actemra stops the IL-6 cytokine exerting its inflammatory effect by occupying the receptors on the cells that the IL-6 has to "dock" on to be able to create inflammation. Doesn't cure anything - it is a very expensive steroid sparer really. But extremely effective for half of GCA patients who are able to stop pred altogether. The other half get to a much lower dose of pred.

[lkcreedon in reply to PMRpro]

That's very interesting. You are so knowledgeable on all things PMR/GCA. I first heard of IL-6 whilst reading about Covid and inflammation. Thanks for explaining this to me 🙏

[PMRpro Ambassador in reply to lkcreedon]

Oh yes - everyone heard about it then! I've spend over 15 years learning about this stuff - more than most doctors.

[lkcreedon in reply to PMRpro]

It's fascinating really and you are able to piece all of this knowledge together but not everyone is. Wonderful

[Ozziedays]

hello, I started MTX 20mg once per week after a couple of flares on my pred taper around the 5mg mark.

I got to zero pred about a year later with no further flares. My rheumatologist (in Australia at that time) recommended I continue on MTX for a further 18 months then taper off. I had no side effects or other issues until I’d been on it for about 9 months after zero pred when my bloods started showing slightly raised liver enzymes. Stopping MTX for 2 weeks brought it back to normal. After a couple of cycles of this, my GP conferred with my rheumatologist (now in UK) and we agreed that I stop MTX (I’d already come down to 15mg then 10mg in preceding months). I’ve now been off it for 6 months and feeling fine. Whether it was a material factor in getting me off pred I don’t know, it seems to be a very individual thing.

[Gaz227 in reply to Ozziedays]

Your journey sounds very interesting , I only take 12.5mg MTX (injection) and can’t get below 4.5mg pred , i would really like to find out if mine is an adrenal issue with the pred reduction or I’m just not taking enough MTX to get me lower . Unfortunately my medical team seem to be content with the fact that I’m stable without pain rather than getting me off the drugs . I fear there is more to my medical issues than pred addiction , inflammatory arthritis I guess has to be treated or a whole new can of worms might be opened , really pleased for you getting off pred and potentially completely off MTX best result ever. 👍😀

[lkcreedon in reply to Ozziedays]

Very individual Id say. Great that you got off both drugs. Well done. This is my dream to. I need to exert some patience for now I think.