Methatrexate

[yorkieme]

I am now ten weeks into MXT,the first six weeks on tablets and the last four on injections.I switched to injecting because the side effects on tablets left me feeling sick,absolutely fatigued and just generally terrible.

I am considering asking to come off of them as the symptoms are just as bad now as before. I can see that interacting with morphine,pred'and other meds it may not be entirely down to MXT but I would say that I feel worse if anything.

Could anyone please explain what the implications might be please ? I am on 10mg pred/day so will coming off MXT affect my reducing ? Would I be able to go back on MXT if needed.What are they intended to do ? I know my rheumy will kick up a stink but if I have as much info' as possible I can provide a more persuasive rationale.

Thanking anyone in advance.

[PMRpro Ambassador]

My view is that IF you can take mtx with pred and not feel worse then it is worth trying. There are no guarantees that it will help you reduce the pred and IF the diagnosis is PMR then it won't replace the pred, it MIGHT let you reduce the pred a bit. Maybe.

On the other hand, if the diagnosis is RA, then mtx is the first line approach almost all over the world. However, I quoted a paper in the last few days that says that 30% of RA patients cannot tolerate the adverse effects and stop taking it. I can't find that one but this

scielo.br/scielo.php?script...

is interesting not least because of THIS statement:

"the use of corticosteroid increases the risk of MTX intolerance."

Certainly, all mtx did for me was create pred-related adverse effects I had never had before. In RA, about a similar number to those who are ill on it or their livers protest find it doesn't work for them. i.e. nearly 2/3 of patients with RA do not benefit from being on mtx.

[yorkieme in reply to PMRpro]

Once again many thanks for your response,helpful as ever. I have downloaded your link and will get to read it in full later.So! Mxt and Pred not good,possibly ?

[PMRpro Ambassador in reply to yorkieme]

It isn't so much that as another side to what rheumies tell PMR patients. Some say that all rheumies would prefer to take mtx - but from some of the studies that appears to be based on inaccurate perceptions. Although it is the "gold standard first line" for RA, in fact it fails for way over half of patients - either because it makes their quality of life worse or it doesn't work, either from the start or stops working later,

[Longtimer in reply to PMRpro]

My sister tried it with RA, she couldn`t stop vomiting, a shame because it took away all her pain.....

[Devoid]

Just to say I persevered with methotrexate but just got gradually worse, it was only when I had a break from it that I realised it was the methotrexate not the illness, not that my consultant would except it. There are other steroid sparers but in my case they didn’t offer a different one and was never sure why they insisted on the methotrexate as I’m on tocilizumab

[PMRpro Ambassador in reply to Devoid]

They use both together in RA I think - but, as I keep saying, GCA/PMR is not RA. However much they might like it to be. And what worries me is that using the 2 together is associated with far higher rates of infection.

ard.bmj.com/content/75/11/1917

is about using them in RA - and the superior clinical efficacy compared to switching from methotrexate that isn't working to TCZ in an RA patient. But ...

[yorkieme in reply to Devoid]

Thanks for the response.I am very close to asking them to take me off but every bit of advice/knowledge helps.

[Surami2020]

I am having lots of nausea and vomiting with the Methotrexate tablets (I have been on them for 6 weeks) even with an increase in folic acid and my rheumy has said I can go on to injections or change to another DMARD. I was happy to consider changing over to injections as I thought injections meant less side effects. It would be nice if medications were a bit easier to deal with. I hope all goes well.

[yorkieme in reply to Surami2020]

Thank you.

[MrsNails in reply to Surami2020]

The injections bypass the digestive tract so will help with the nausea & vomiting but unfortunately not the fatigue. That will improve in time as your body adjusts, it’s so gradual that suddenly you realise your doing OK!

I used to take mine on a Sunday & keep Mondays free with no commitments so l could just rest. I continued with that regime & it became ‘My Day’ to do as l pleased.

I have been back on MTX for over a year at a much lower dose because of my liver but struggled with fatigue which l believe was more from PMR & too low a dose of Prednisolone, l’ve had two increases in dose of MTX & l thought this last one would beat me but No l’m adjusting, l have no fatigue & the pain in my arms is much improved as it has in my thigh muscles & l can actually walk down stairs again, one foot in front of another. Last week l tried reducing my Prednisolone by 0.5mg alternate days, Big Mistake!

So l’m back to Slow n Steady but the good thing is No PMR Fatigue, No MTX Tiredness, 13.5mg Prednisolone & 25mg MTX weekly, it’s a heavy dose but l’ve come through worse......

[Surami2020 in reply to MrsNails]

Thank you for the info MrsNails. I have also read about your experience and feel more prepared for this journey. I haven't experienced any extra fatigue thank goodness. I am taking the MTX on a Friday night so that I can work on Monday but that isn't really working for me. I had to have today off work and managed to get a GP appointment. He gave me a script for Zofran for Mondays so I can work (due to the drowsy effects of Maxolon) He has organised 2.5mg MTX tablets so I can split the dose (with food) which will hopefully at least least reduce the symptoms until my rheumy appointment in 3 weeks time. If this doesn't work I am to do my next lot of blood tests early and email the rheumy. I do hope this works as I am not looking forward to the increase in dose.

[MrsNails in reply to Surami2020]

Hi Surami

First - your GP’s organised 2.5mg Tablets MTX? What strength were you taking?......

As far as l am aware it should always be 2.5mg when MTX is prescribed as a DMARD so there is No Risk of Over Dose or Toxicity. It’s a pain for me being on 25mg having to take 10x2.5mg fiddly little tablets ~ l wonder if the Protocol has changed? I will check that out as l like to be up to date......

Have they not consider the injections for you to bypass your digestive tract thus eliminating the nausea & sickness.

And, another question, are you in the U.K.?

[MrsNails in reply to MrsNails]

Surami2020 l’ve just checked my latest Box of MTX & there is No Dosage Warning on it but it used to say Please Check The Strength of these Tablets before you take them....

[Surami2020 in reply to MrsNails]

I am in Australia. The rheumy prescribed 10mg tablets with a printout in extra large bold writing and went through the instructions 3 times and made sure I understood them. I also write on the container in permanent marker the dose of the tablet after a mix up with the 2 different dose tablets of pred ( even with glasses on I can't read what is written on the pred tablets). My GP asked me twice to make sure I was taking them as per orders before writing this next script.

Because the rheumatologist is 115km away from me and in that office only 2 days a week I emailed him after the first 3 week blood test and he upped the folic acid from 1 tablet to 3 tablets per day and take MTX with food and said that should fix the problem. If it didn't he was happy to either go to injections or change drugs.

The weekend before last was more tolerable so I thought I was through the worst so last weekend was a surprise to be back to square one. Just hoping this split dose will get me through the next couple of weeks to my next appointment which hopefully this time will be a face to face as restrictions seem to be easing more (he flies up from Sydney).

[MrsNails in reply to Surami2020]

Ah! In the U.K. we only get 2.5mg MTX Tablets, it’s a Standard Excepted Practise.

What strength Folic Acid do you have? Here we are given 5mg; l have it everyday except MTX Day, some people have it less depending on their Rheumatologist & how they are.

I always take my MTX after lunch with plenty of water.....

Let us know how you get on.

Good Luck 🍀

MrsN

[Surami2020 in reply to MrsNails]

I started on 500mcg (I can't find a conversion to mg) for 6 days of the week and am now on 1500mcg. I make sure I have plenty of water as I read somewhere to make sure not to get dehydrated and I am also on blood pressure tablets and the pred both at night which take a lot of fluid out of my body. Thanks for your advice,

[PMRpro Ambassador in reply to Surami2020]

1000mcg (microgrammes) is 1mg,

The normal daily dose for folic acid is 5mg - 10 times the dose you say you started on. I think you might do much better on a lot more than 1.5mg!

[Surami2020 in reply to PMRpro]

I have just researched and in Australia they say 5mg per week. It is a big difference.

[MrsNails in reply to Surami2020]

From our NHS Website

Taking folic acid

You may be prescribed folic acid tablets while you're taking methotrexate. This is a man-made version of vitamin B9 (also called folate).

Folic acid helps protect the healthy cells in your body and reduces some of the side effects of methotrexate. It can make you less likely to be sick (vomit) or get diarrhoea.

Your doctor will usually start you on one 5mg folic acid tablet, taken once a week. Take it the day after your methotrexate.

If you are still bothered by side effects, your doctor may increase the dose of folic acid. You may need to take 1 tablet 6 times a week, starting the day after you take your methotrexate.

Important

Do not take folic acid on the same day as your methotrexate. It can stop your medicine from working properly.

[MrsNails in reply to MrsNails]

I have always take 5mg for the Six non MTX days.

[PMRpro Ambassador in reply to Surami2020]

That is the basic dose - but many patients need more to combat the adverse effects.

[MrsNails in reply to Surami2020]

As Pro has said, that’s nowhere near enough, you have to be prescribed the 5mg you can’t buy them over the counter. MTX destroys all the Folic Acid in our system, hence the high dose.....

[PMRpro Ambassador in reply to Surami2020]

My rheumy told me to take half the MTX dose before bed and the rest the next morning - he finds that reduces the nausea and it was certainly not a problem for me. It was all the rest ...

[Longtimer in reply to MrsNails]

Good news hope it stays that way, my delivery comes today (epipens) 15mg, so reading your posts really helps. I am struggling to walk at the moment with myopathy/pain/fatigue, will try anything to have some normality!

[Louisa1840]

I tried methotrexate for about 6 weeks too but came off it because of terrible fatigue. Then I tried Leflunomide (said to be a more effective DMARD than MTX) but I have just stopped that because I think it's causing peripheral neuropathy.

We often read on this wonderful site that PMR will take its own time and I am wondering if we simply need to be more patient? PMR will go when it will (or not but so long as can get down to an acceptable daily pred dose maybe it's not too bad?). We live in such an instant world where we want instant results...

Maybe simply sit with whatever dosage keeps your symptoms comfortable. Use the DSNS method to reduce and be patient?

Naturally do all you can to support optimal health such as a good diet, positive attitude and whatever exercise you can tolerate i.e gentle aqua or tai chi?

All the best!

[PMRpro Ambassador in reply to Louisa1840]

I'd be more impressed with the drive to add DMARDs if the rheumies agreed with each other! My rheumy who has previously worked with Dasgupta and is now a world name in his own right says HE has had good results with mtx but less good with leflunomide. We know Dasgupta thinks the opposite. But there is medical literature that suggests that it is all based on their preceptions - and they aren't always that accurate.

[Longtimer in reply to PMRpro]

Their perceptions....and the patients!....

[Suffererc]

What is it that the Medics are so keen to put people on MTX. Are we not being told something????

I have refused to take it and am doing fine on tapering Pred. Currently tapering to 6mg

[MrsNails in reply to Suffererc]

It appears that more & more Rheumatologist’s are taking this view....

I personally have been on it three times since 2014 a couple of years into a very difficult journey on Prednisolone for PMR

I was at a PMRGCAUK Roadshow about four years ago & they were discussing it then about it being prescribed with Prednisolone from the beginning......

I’ve not read much about it since but l think l have some research, l can send you later.

MrsN

[Amkoffee]

I've been injecting Mtx for about 2 months and have no relief but I can't take pred. But apparently it can take 2-3 months to see a difference.

[PMRpro Ambassador in reply to Amkoffee]

And that is in RA - not PMR.

[Amkoffee in reply to PMRpro]

I'm trying it instead of pred.