Methotrexate

[marsh63]

Hi I was wondering if anyone could advise me. I’ve had PMR for a year and am struggling to reduce much beyond 11mg and am currently going through a flare. The rheumatologist has put me on methotrexate to help although she says it takes 12 weeks to get into the system. The questions are is there a good time of day when to take the tablets? Am or Pm. Also has anyone found it helpful?

Many thanks J

[PMRpro Ambassador]

Pred should be taken early mornings. Methotrexate is just once a week and some people find taking it before bed means they sleep through the worst of their side effects. You have been given folic acid too I assume? That is important and if the dose you have doesn't stop side effects you may need more.

I hope the mtx helps - there are no guarantees though. It helps some people, others it doesn't. Some people have no side effects, others do.

[marsh63 in reply to PMRpro]

Thanks for the reply. It makes sense I think to take them in the evening separate to the steroids. I have been given folic acid as well. I guess I have to try and see if it helps. The rheumatologist says I have the aggressive form of the disease.

[PMRpro Ambassador in reply to marsh63]

"The rheumatologist says I have the aggressive form of the disease."

Whatever that means - if they don't know they seem to tell you it is "atypical" or "aggressive" - which probably covers 2/3 of the population with PMR...

[Hidden]

Hello Marsh

I’m on Methotrexate for the second time, it had to be stopped for Surgery.

I’ve written Posts on it before so l will repost for you.

Interestingly, I could never get below 11mg either but eventually after two Big Flares l was stuck at 18mg & that was when l started Methotrexate.

Find a day that suits you, put a reminder in your phone, l take mine on a Saturday, after my lunch & 5mg Folic Acid the other six days.

It’s not an easy drug initially but it does improve, you can vary when you take it, bear in mind it can make some people tired the following day so factor that in to your choice of day. I had some issues at the beginning but now totally unremarkable.

I’ll repost my previous post for you to look at & if you have any questions l’d be happy to help.

Best Wishes

Mrs N 💅🏼

[Hidden in reply to Hidden]

My experience with Methotrexate

I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working so l decided to retire early to see if I could get the dose lower.

I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath & my BP was through the roof & my resting pulse rate was 100+ so there was no choice but to try it!

I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.

At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.

I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.

For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October & I'm now at 6.5/6mg l remained longer at 6.5mg as we were going on holiday & l wanted to be stable & not rocking the boat for a 0.5mg drop.

Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.

That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.

It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.

If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, no need to wean off it.

Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days but other people have differing protocols.

If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.

Best Wishes & Good Luck 🍀

Mrs N

[marsh63 in reply to Hidden]

Thank you for posting your positive experience with Methotrexate. I hope that you are able to continue the reduction with prednisone. J