Methotrexate - not for me: Hi all I've given MTX a... - PMRGCAuk

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Methotrexate - not for me

Coffeebeans profile image

Hi all

I've given MTX a good go having had 9 injections. It's not for me, the last three weeks have been hard with unbelievable fatigue, brain fog and a total inability to cope as a result. I'm off work for 2 weeks now while I recover and I'm going to take longer if needed.

Waiting for a review with the rheumatologist to discuss next steps. Meanwhile, speaking to occupational health to ensure PMR is recorded and I'm asking for reasonable adjustments to be made too. I'm feeling a little exposed because my current (good) boss is retiring.

I'm looking for reduced hours and phased return right now. Time off for flare ups. Time of for medical appointments and a recognition to avoid going into schools for the time being.

Anything else I should think about? Would value any experience you've had 🙂.

Thankyou CB.

23 Replies

Hi Coffeebeans. I'm not sure in what capacity you're involved with school...are you a teacher? I had a quick scan through your profile and previous posts but didn't pick anything up.

I worked in primary school for 12yrs and was diagnosed in May 2019. I've had 2 unsuccessful attempts to get back to work but have found during my time off sick that I've used that time to work at improving my health by managing side effects more effectively and pacing myself. So when I returned to work I felt reasonably ok. Unfortunately, by the 6th or 7th week, the extra physical activity, stress and normal everyday pressures of the job caused my health to deteriorate again, which ultimately resulted in a flare of my condition and the need to increase my steroids again. This in turn caused a re-emergence of my PMR symptoms and side effects from the steroids, rendering me unfit for work again!

After this happened a second time, I eventually realised I really couldn't work and maintain functionality...or sustain what was for me, my optimum level of health. I'd been lucky enough to have a very supportive Head and SLT and phased returns, change of duties, reduced hours, etc, were all implemented, but despite all that in place, I still found it impossible to stay well whilst doing my job. I'm now taking medical retirement!

Obviously, at your young age, this isn't an option, but you may have to seriously consider taking long term sick leave. You'll find it very hard to balance both your work and your health. This isn't something you can just 'push through'.

Some important decisions to make!

I hope you manage to find a way forward that's right for you and wish you luck.

Coffeebeans profile image
Coffeebeans in reply to Kendrew

Hi Kendrew

I'm a contract manager for the LA which covers facilities management across 21 schools. I used to visit all of these schools regularly however I've kept inside visits firmly off the list this year. I decided to venture inside last week and quickly decided not to do that again soon. Hardly a mask in sight. Sick child awaiting pick up etc. I held my breath.

I do think this period of sickness is to recover from the MTX which has knocked me sideways. I do absolutely agree with you re longer term balance which is what I want to get across to Occ health. I remember your dilemma clearly. And I also think you made the right decision for you. I think like you I have to try the measures first, whatever they will agree to and see where that takes me.

I suspect the rheumatologist will want me to try another sparer so this may repeat itself. They seem really keen on this approach at Leeds which I'm surprised at and I will approach with some trepidation this time.

Oh it's tiring. And not many get our illness either - its tiring just explaining I'm bloody tired most of the time 😬💤. Loads of sympathy for broken limbs, heart attacks etc but not much for ours. We look well - it's a pred special with rosy cheeks. 🙄

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Coffeebeans

Unfortunately it was ever thus…welcome to the world of invisible illnesses.

Invisible illness
Kendrew profile image
Kendrew in reply to Coffeebeans

I understand completely and yes....I know many people look at me and think, "What's wrong with her? She looks ok to me"!!! So frustrating.

Coffeebeans profile image
Coffeebeans in reply to Kendrew

It's very frustrating.

Comment at work last week - you pick it up, it needs doing. Colleague is having a hard time with his wife being ill. Hang on .. I've already said I need reduced hours because I'm struggling..

Now I'm off sick. Maybe they will listen next time. I was hoping to reduce hours rather than go sick but sometimes you just need to do what's right for you!

Kendrew profile image
Kendrew in reply to Coffeebeans

This was partly my problem too. Noble actions pay no dividends with PMR I'm afraid! If people see you behaving 'normally' they soon forget that you're actually unwell. You hit the nail on the head when you said, "Do what's right for you"! Took me a while for that to register though. 🙄

Coffeebeans profile image
Coffeebeans in reply to Kendrew

Me too. I'm learning..

Hi just to say after about 3 weeks of stopping methotrexate I felt unbelievably better, I do hope this is the case for you

Coffeebeans profile image
Coffeebeans in reply to Devoid

Oh I do hope so. Thankyou!

Did you have a similar experience?

Devoid profile image
Devoid in reply to Coffeebeans

Yes I had the most awful fatigue and was unable to do anything. I didn’t realise it was the methotrexate as they prescribed it when I was very poorly with large vessel vasculitis, it was only when I had a break from it due to a dental infection that I realised I was feeling better than I had in months. I went back on it as advised by my consultant, first week okay, 2nd week fatigue returned and by the 3rd week I was back to not being able to get about. Stopped and since then I’ve continued to improve.

Coffeebeans profile image
Coffeebeans in reply to Devoid

Very similar then. Took me to week 5 but the fatigue is something else. Thanks again, good to know I'm not unusual.

Devoid profile image
Devoid in reply to Coffeebeans

My consultant basically said it couldn’t be the methotrexate but the difference without it was remarkable. I think the problem is that they are used to treating rheumatoid arthritis and in general I think it works well for these patients. I do hope you get more support than I did when I said I couldn’t continue with it

PMRpro profile image
PMRproAmbassador in reply to Coffeebeans

Me too - the first week wasn't too bad, no nausea nor anything the day after the jab, by the end of the week I was beginning to flag and had other problems - hair falling out in clumps and aches. The following week was worse and by week 4 I could barely put one foot in front of the other. The other problems were what are usually blamed on pred - hunger, weight gain, poor sleep - and that is mentioned, that MTX can exaccerbate pred effects. I'm pretty sure it was what set the tachycardia/bradycardia episodes off or at least made them worse as I'd never noticed them before.

It took a couple of weeks to improve - I'd already discussed having a holiday from the MTX as we had a trip to S Korea for a meeting so I stopped before it, by the end of the week there I felt SO much better. I couldn't have done it on MTX. I had gained a kilo during the 4 weeks on it - and just didn't lose it again!

Coffeebeans profile image
Coffeebeans in reply to PMRpro

Devoid and PMRPRO

The nurse was pretty supportive and agreed that coming off was right. What the consultant thinks is.another matter but I'm not for shifting on this.

I also had weird neck aches that didn't feel like the usual PMR niggles, pressure in ears and neck but no major hair issues. I noticed some increase in the amount I was losing when washing but not dramatic. The sores in my nose and the relentless fatigue were awful. Fairly common it seems but we need to be able to function don't we.

I can relate with you,i was so ill on Methotrexate tried Pills then Injection.I was constantly sick,couldn't eat just felt so dreadful.I am now on Actemra had couple issues at start but fine now,and i am off Steroids.Hope you get better and get something suitable for you.xxx

Thankyou scottygirl73. Glad you've found something that works - I'll get there I'm sure. Just need to re-adjust the expectations and.timeframe again!

Hi, Having been down that well trodden route of first Azathioprine (Imuran) in 2012 for suspected GCA, and both Methotrexate and Leflunonmide seven years later for supposedly incurable Rheumatoid Arthritis, (and which the Rheumatologist couldn't find a trace of six months later). By the way it took me over 18 months to recover back in 2012 but self administered Prednisolone got me out of the hole much quicker in 2020 with 'the ever present' PMR and just as COVID arrived and which these immuno suppresessants can make one very vulnerable to. And so to lighten the tone I'll leave you with this thought, "If these immunosuppressants are the answer then I would dread to think what the question was".

Methotrexate was not good for me. Extreme fatigue, muscles hurt like I had no pred in me, hair falling out. I think rheumy thought I had RA along with PMR. Wrong! Quit MTX after six long months. Much improved. Can’t advise about work as I’m much older. My best

PMRpro profile image
PMRproAmbassador in reply to Ipadmom

Yup - almost the same for me. Except I didn't last 6 months!!!!

I’m very sensitive to medication but methotrexate gave me the worst reaction I have ever had with anything. I do not have the giant cell that sometimes goes with PMR Methotrexate was even giving me those symptoms I almost went to the ER on Saturday because I thought I was having an aneurysm or something I did not know what was going on. My doctor said he never had anyone have these reactions which I wasn’t surprised because I am always one of those people who creates new symptoms from medication. But he did tell me he was going to write this down because he believed me as soon as I quit taking it all the symptoms left. I’ve heard some people do very well with it but there’s the few of us who do not.

Coffeebeans profile image
Coffeebeans in reply to Schurch

Oh sounds even worse than the creeping death I experienced.

I have a few colleagues who have been on MTX for years, for RA mind, not PMR.

At least we don't need to go back there having been on it once!

PMRpro profile image
PMRproAmbassador in reply to Schurch

I read an article not so long ago where it was said that most rheumatologists have no idea what the real figures are about discontinuation of MTX by patients and so they continue to think it is a wonder drug. I have no idea WHY they don't know such a simple fact.

In this study

link.springer.com/article/1...

it was found that more than one third of patients with RA/PsA discontinue MTX because of adverse effects - and it is thought the proportion may in fact be higher because many tolerate milder effects such as losing a couple of days a week to "MTX flu" because they think it must be them and not the drug.

However, this study

sciencedirect.com/science/a...

found that discontinuation of MTX was greater in patients on steroids - because steroids INCREASE the adverse GI effects of MTX. It is a listed effect. And vice versa - the MTX potentiates steroid adverse effects.

It strikes me that it is about time that rheumies who are so keen on us using MTX to get off pred had this brought to their attention. They are currently trying to get funding for a study on MTX as a steroid sparer - because thus far there aren't any good studies on it. One of the rheumies at a research meeting I was at the other week expressed the hope that this would be funded and finally put the dispute to rest one way or the other.

Coffeebeans profile image
Coffeebeans in reply to PMRpro

That's really interesting - that patients on steroids discontinue MTX to a greater degree. But I also don't know why rheumatologists think it's a wonder drug. It certainly works well for those that tolerate it from my limited experience of my colleagues but my word if you don't tolerate it, it's truly awful.

I also think rheumatologists should be questioning why people discontinue the stuff without discussing it. I've made it clear to them but you do come up against some resistance. Maybe that's why.

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