DMARD trial

[marionofnorwich]

Some input needed please. I am in Norwich under the care of Max Yates and currently on 3.5/4mg of pred. He thinks that i will stay on 4mg. My inflammation markers are in the normal range. I have a lot of disfunction in my legs but cant decide if that is PMR or collateral knee/muscle damage. My upper body is a lot better. Some discomfort in my neck and shoulders but that is normal for me and bearable. However generally i am far from functioning normally. I have been contacted to take part in a DMARD trial which would involve taking methoxotrate initially with a possibility of other DMARDS being added if i were to be selected for the drug and not the control. I am tempted because i feel a bit 'stuck' at the moment. What thoughts?

[DorsetLady PMRGCAuk volunteer]

Give it a go….you might find it helps - if so, good, if not, you haven’t lost anything in trying,

[SheffieldJane]

I think I probably would. I felt like a special private patient the last time I took part in research. It would be great if they could tweak Methotrexate to be more universally useful for us. Let us know what you do.

[marionofnorwich in reply to SheffieldJane]

I think i will give it a go. Whilst i am not worried about steroid sparing at 4mg, there is something not quite working and i don't know what it is. The only other thing i can think of would be upping the dose and i don't want to do that. Since being in steroids i have gained weight, hypertension and statins. I am reluctant to add more to the cocktail but quite keen to see if it makes a difference to my leg symptoms which are annoying at best distressing at worst

[SheffieldJane]

I understand and empathise with all of that, completely. I have developed co-morbidities since my PMR diagnosis in 2016, as they are mostly arthritic I think Methotrexate is still an appropriate medication. You can come straight off it if it doesn’t suit you.

[piglette]

I think I would do the trial, particularly if it is being used to help others in the future too.

[marionofnorwich in reply to piglette]

Yes, that is a good point too!

[PMRpro Ambassador]

If the opportunity is there, I would say grasp it. DMARDs do work very well for some people but there is always the question of intolerance. You have to try them to see how they work for YOU - that is the only way to see if they work or make you unwell.

Of course, there is presumably a 50/50 chance you are in the drug rather than placebo arm but whatever - it should add to our knowledge relating to the use of DMARDs in PMR.

[marionofnorwich]

Yes, I think I will go for it!

[Longtimer in reply to marionofnorwich]

If I still had PMR and was asked by him to do it I would. Methotrexate didn’t suit me, when I did try it, or my sister with RA , but it does suit many people. Good luck

[Longtimer]

I have lower leg problems, pain sometimes, very weak, feel like they are going to buckle under me! I know something isn’t right…. but what. Went to physio this morning, no idea what it can be….No surprise there then!

[marionofnorwich in reply to Longtimer]

I am about to talk to a recommended physio. I will let you know if i get any light shed

[Longtimer in reply to marionofnorwich]

Thank you!

[Rugger]

Is this the STERLING, double-blind, placebo-controlled study? If so, you have to accept that you may not get the active MTX, but it is always worth taking part to help medical research - hopefully as well as helping you!

Best wishes, whatever you decide.

[marionofnorwich in reply to Rugger]

Yes, I understood that I wouldn't necessarily get any drugs at all, but I would know ie not a blind as I understood it but maybe I am not right there

[Rugger in reply to marionofnorwich]

It's a while since I read the research protocol in its design stage, so you will be more up to date than I am. However, you should discuss it with Max Yates so that you are fully aware. Placebo controlled trials are quite often double-blind to avoid biased results, but I am happy to be wrong!

[Sharitone]

I guess you'll be closely monitored, and you can always stop it if it doesn't agree with you.

[Rynn33]

I started 15mg MTX 12 weeks ago and I do think it’s helped me get from 5mg to 4 mg so far as I was stuck at 5mg for about a year. I had nausea for first month and then it settled and a bit of tiredness on day 2/3 after taking it but my liver etc blood results have all stayed normal so far. I know it doesn’t suit everyone so I’d just make sure they are testing your bloods very regularly. I’ve been able to increase my daily walk as well so it may be helping more generally but it’s hard to tell.

[purplesprouting]

Hi, I too am under Max Yates at Norwich hosp, I am currently waiting to hear if I have been accepted for this trial to help with my PMR....Will let all know as and when I get my letter

Marion of Norwich, I wish you all the best x

[AtopicGuy]

Go for it! Many of those on the placebo get relief without the worries of side effects! And if you're on the 'real' medications, you might learn something about your individual condition that helps your treatment in future.