PMR

[choirsinger1986]

Is there any member who is taking methotextate in addition to Pred ? If so how are you managing and with what side effects? Anyone on Amitriptyline ?

[MrsNails]

Hi, l am on Methotrexate & Amitriptyline, if you have a look at My Profile you'll see lots of Posts but will copy you "My Methotrexate Story" if you have specific question please ask. MrsN

[choirsinger1986 in reply to MrsNails]

Hi. Looked at messages your profile. Have you had any side effects with MTX or Amitrip. ?

[MrsNails in reply to choirsinger1986]

With Amitriptyline the trick is to take it early enough in the evening, so you don’t get a ‘hangover’ feeling the next day ie you’ve slept it off.

I take mine at 7pm after Dinner & l’m on 20mg now. It relaxes the muscles & it’s particularly effective for shoulders, necks (my experience) and backs but have not taken it for that reason.

Methotrexate.....

I’m on it for the third time, always as a Steroid Sparer, l found it extremely effective the first time around & reduced from 18mg->7.5mg without Missing a Step, it was stopped for Surgery & l was off it for over a year due to treatment but once l felt the PMR Symptoms gearing up again l happily returned to it.

Now it does have a bad press & everyone is very apprehensive about taking it, no one more than me.....

I found it pretty unremarkable at first except it made me tired the following day, so l cleared my Diary on a Monday to let me rest & do whatever suited my best.

About Four Months in l suddenly developed Nausea on MTX Day - l took a simple antiemetic initially & changed my diet for a very simple one & over the course of a month or so it subsided.

Drinking More Water on MTX Day & taking 5mg Folic Acid the Six Non MTX Days helps too.

I then had issues with a Fatty Liver, shown on Blood Tests so my MTX was stopped to my detriment but the liver issues were resolved by a change of diet & a Two Stone Weight Loss.

I am back on MTX at 25mg which is High as a Steroid Sparer, my ALT Levels have returned to Normal so my GP, Consultant & l are more than delighted!

What dose of Prednisolone are you on?

Regards

MrsN

[choirsinger1986 in reply to MrsNails]

Thanks.Was on 12.5mg but have today upped it to 14mg.

I'm worried with risks of taking MTX and not confident symptoms of PMR will increase once MTX stopped.

[MrsNails in reply to choirsinger1986]

The reason for recommending MTX is in effect to get the ‘best effect’ from the Prednisolone.

My issue was the Steroids were causing me more harm than benefit, so l really didn’t have a choice & as l say l whittled down the Pred without missing a beat. How long have you been on Prednisolone & had PMR?

[choirsinger1986 in reply to MrsNails]

Nearly 12 months. Don't really trust MTX which to me just masks the level at which the PMR is at. And there is no guarantee that PMR will not be worse once MTX stopped.

[MrsNails in reply to choirsinger1986]

I think you have answered your own question really, which is the benefit of the this Forum you can look at the arguments or opinions on both sides & ultimately draw your own conclusion.

MTX is a heavy duty drug & my opinion is you really need to be onboard.

Good Luck 🍀

MrsN

[choirsinger1986 in reply to MrsNails]

Thank you and good luck to you too.

[PMRpro Ambassador]

I tried it for a month but couldn't cope with the ovewhelming fatigue and other effects, mostly ones that are usually ascribed to pred but I had never had before such as hunger, weight gain, bruising and joint and muscle pain (got enough of that from PMR!). My hair also started to fall out in clumps. None of the usual nausea and stuff.

[choirsinger1986 in reply to PMRpro]

Thanks - I know everyone different with differing severity of PMR but given what I've read about MTX , and your comment, not going to try it. I'm just hoping, like a lot of other PMR sufferers, that I can come down off steroid slowly but surely with no sig flare ups. Is Amytrip worth trying ?

[PMRpro Ambassador in reply to choirsinger1986]

A lot of people DO take it without problems. It probably is worth a try - it is easy to stop.

Amitryptiline - no idea to be honest. I can't see it will help with the PMR itself but quite a few take it and find it helps sleep and other problems.

[choirsinger1986 in reply to PMRpro]

Thanks - don't really like the risks of MTX - my view is PMR will reduce in it's own good time for each person.Amitrip - my sleep was a great problem at first but it has improved - if still disturbed. It may be my journey with PMR may be longer than I'd hoped

[Marijo1951]

I've been taking MTX since December 2017, on the whole without serious side effects. I had diarrhoea to start with, but this stopped when the rheumy increased my folic acid dose from 1 to 5 days per week. I've managed to mitigate the fatigue by taking the MTX shortly before bedtime, rather than earlier in the day. On Friday nights I set an alarm for 10 p.m. to remind me. However it did cause me problems when I gashed my leg open in August last year. Nobody advised me that the MTX would slow down healing until my GP mentioned it just after I was finally discharged in January! During that time I developed cellulitis and had 3 courses of strong antibiotics. So my advice would be to stop taking MTX at any time when your poor depleted immune system is called on to work hard.

[choirsinger1986 in reply to Marijo1951]

Thanks for your reply and advice 👍🙂

[dancersize2 in reply to Marijo1951]

I've been on MTX since Jan 2019. Managed to reduce pred from 6 to 2.5 in the first year and didn't have any major probs with it. Only managed to get to .5 pred in 2020 and am wondering about reducing the MTX to 15 or 10 before I try for zero pred just in case the PMR flares a bit. I feel like I need to be off MTX before I could take a covid vaccine. I didn't know it affected healing. Thank you for that info.

[Marijo1951 in reply to dancersize2]

I hadn't thought about it affecting the COVID vaccine, but I have an online appointment with my rheumy on Wednesday so I'll raise the matter with her. I don't want anything to delay getting that particular jab the minute it becomes available!

[PMRpro Ambassador in reply to Marijo1951]

Even if it reduced the effectiveness - still worth having any jabs. But it IS recommended - on the basis of a study - that you should stop the mtx for 2 weeks after having the jab to improve the immune response.

[Marijo1951 in reply to PMRpro]

Thanks PMRpro. In fact you're probably better informed than my rheumy will prove to be. We'll see!

[sam_the_cat]

I am taking both prednisone (15mg) and methotexate and I am tired most time. When I first started taking prednisone I felt great, full of energy, slept well. I have only taken three injections of the methotexate and do believe it is one of the side effects that are listed. I did try the amitriptyline but stopped did not like the feeling at all, it was to help with the headaches.

[choirsinger1986 in reply to sam_the_cat]

Thanks. I'm not happy about taking both these. I've increased my pred to 14mg yesterday and have less pain today so see how I manage with additional drugs - the less the better for me and in my opinion.

[Sparky20]

I am taking both but only been doing so for 2 weeks, the only side effect I have is the morning after I have the runs but it does not last long. I take methotrexate tablets, and I take folic acid 6 days out of the 7 .