methotrexate

[blueisgreen]

what have others experienced when adding this to prednisone? Were you able to taper down faster because of it?

[MrsNails]

Hi, this is my Story but does need a bit of an update, which l keep promising to do 😉

MrsN

healthunlocked.com/pmrgcauk...

[Horsewhisper in reply to MrsNails]

Hi Mrs N, the link didn’t work when I clicked on it?

[MrsNails in reply to Horsewhisper]

Hi, did you click it in the email? As that sometimes doesn’t work! Try it again from the Forum or App; otherwise just click on my Avatar (Photo) which will take you into My Profile, If you scroll down you’ll find it under ‘My Methotrexate Story’

Hope that helps

MrsN

[Horsewhisper in reply to MrsNails]

Many thanks - I found your story via your profile. Very interesting and helpful x

[MrsNails in reply to Horsewhisper]

Any questions, either PM me or ask in this thread, happy to help anytime.

[Horsewhisper in reply to MrsNails]

Thank you 😊

[PMRpro Ambassador in reply to MrsNails]

Neither here nor the email work - I have emailed Support to say it is happening now and again. I couldn't get a couple of new threads to load last night ... IT playing again?

[MrsNails in reply to PMRpro]

I’ve noticed it more & more, even with links from with HU it’s a total pain.....

[PMRpro Ambassador in reply to MrsNails]

Needs us all to complain - so they notice ...

[MrsNails in reply to PMRpro]

Done x

[Hidden in reply to MrsNails]

Hi MrsNails - I have received your email and am currently testing out this issue. I will email you back when i've got a solution. Thank you for your patience.

[blueisgreen in reply to MrsNails]

When I clicked on your profile, there were many many title with MTX in it. Where is the one about the "story"?

[MrsNails in reply to blueisgreen]

Hi, Scroll right to the beginning of my Posts & it’s the third one ‘My Methotrexate Story’ l might be able to send you a different link.....

Try this.....

healthunlocked.com/pmrgcauk...?

[Horsewhisper]

Hi blueisgreen, I have GCA and started 20 mg MTX in May this year whilst on 30 mg Pred. With a slow and steady taper plan (thanks to the advice from the super ladies on here) I managed to get to 15 mg Pred two weeks ago. Although I think the MTX helped me to get to this dose, I think this low dose caused a GCA flare and I have this week, gone back up to 20 mg Pred. The MTX seemed to give me more energy, but I do suffer from diarrhoea and nausea for a couple of days after taking it. It also flattens me and I am unable to do anything the day after taking it. I am wondering whether to continue the MTX as I am starting to think that the side effects are affecting my quality of life, more so now. That’s where I am with it all. Hope this helps.

[PMRpro Ambassador]

I agreed to try mtx about 2 years ago - with the proviso I'd stop it temporarily for a foreign business trip a bit later in the summer. The first dose was fine, no noticeable effects besides hunger, but after the second my hair started to fall out in clumps and I was very tired for a couple of days. I started to develop aches in muscles and joints and bruised more. In fact - all the things supposed to be corticosteroid adverse effects that I had never experienced with pred appeared and got worse over time. After 4 weeks the fatigue was overwhelming except the afternoon of the day I was due to take the next dose at night. More folic acid didn't help. I'd never have made the meeting if I hadn't stopped. It took a few weekes to start to feel significantly better.

It is different for everyone - but even my rheumy agreed it made no sense for me to go through that in the hope it might work. I've never had serious problems with pred - I'm not prepared to feel worse to take less!!

[Suffererc in reply to PMRpro]

A question re MTX. . Does it take away the pain. Once and if it lowers the pred dose, do you stop taking MTX. Does it really help the PMR and if it does , why don't we get prescribed that instead of Pred.

I am on 6mg Pred, GP wants me to take MTX but I have said hang on to see if my taper works this time. So far it is doing good

[PMRpro Ambassador in reply to Suffererc]

If I were on 6mg and any doctor wanted me to take mtx I'd be looking for a different one. That is what is called a physiological dose, similar to the amount of corticosteroid that the body makes naturally in the form of cortisol and which is essential to life. Less pred means the body must make more cortisol - and that is the real limitation at this stage, the return of adrenal function.

mtx doesn't work reliably in PMR - if it did, you are quite right, they would use it from the outset and a lot more. In some patients it changes the way the body metabolises the pred and you get more bang for your buck. So you get the same result for a lower dose of pred. But it can also increase the adverse effects of pred - and pred can also increase the adverse effects of mtx. Even if you don't have adverse effects it may not work and the one study in the past that showed it did reduce the amount of pred in total found that it took a year to see a difference - and at a follow-up to the study 5 years later they found it made no difference to the incidence of pred-related adverse effects. So why bother? Add to that, it has its own adverse effects and that immunologists are concerned about using mtx and pred together and the effect on the immune system in the longer term.

It is one thing being stuck at 16mg/day and considering adding mtx. At 6mg, it is a very different matter. I suspect that when it does work it is because the diagnosis of PMR wasn't entirely correct - it is the first line approach for inflammatory arthritis and if it is really LORA (late onset RA) and not PMR it may work. But it will take up to 6 months to see a real effect and even in RA it doesn't always work.

[Suffererc in reply to PMRpro]

Thank you. I have already decided not to take MTX. I am tapering using DSNS and it is working well. Blood tests at our surgery have been cancelled because shortage of agent for testing blood. So am not bring pushed to taper to quickly. Am feeling really good at the moment in fact near normal. Thank you again

[MrsNails in reply to Suffererc]

Hi Suffererc

No it doesn’t work on pain, it is given as a ‘Steroid Sparer’ for those of us on Prednisolone as that is the only Medication* that works for PMR ie we get a better response to the Prednisolone but no one can really explain exactly why it does work but l know it did for me on two previous occasions

I was at a Conference several years ago where Methotrexate was under discussion as a treatment from the beginning but to date l have heard nothing further on this.

Suffererc are you in the UK as it is not prescribed here at GP Level? It would be unusual to add it in at 6mg as that is below the Physiological Dose we need daily. I was stuck on 20mg Prednisolone but the Pred was now causing me more problems & l needed to get my dose lower.

*Actemera (TCZ) is being used in the USA for PMR along side Prednisone & in the U.K. on a Trial Basis for 12months for GCA & enabling many people to reduce the Prednisolone.

[Suffererc in reply to MrsNails]

Thank you. Had already decided not to take.

[Marijo1951]

I've been on MTX since December 2017. I started because I couldn't get below 25 mg pred without a flare up of GCA. It certainly helped me pass that hurdle, but I don't know what difference it's made since then. I'm reducing very slowly - I'm now at 7 mg per day.

I suffered from diarrhoea at first but that went away after my folic acid was increased from 5 mg once a week to five times per week. There's no doubt that MTX can knock you out physically. I honestly couldn't believe that the deathly fatigue that I already suffered from the ailments became even worse when I took it during the day. I've pretty well stopped that by setting my alarm for 10 p.m. every Friday night and taking it shortly before going to bed. I'm usually okay the following day.

[Longtimer in reply to Marijo1951]

I presume you take a tablet?....I have opted to inject because I react to meds, especially tummy wise......and have p!entry round there to inject into!......can't remember anyone else on here saying they inject MTX.....

[Marijo1951 in reply to Longtimer]

Yes, I take 6 tablets of 2.5 mg. Not sure if you're injecting it yourself, or if you'll have somebody else to do it. If the latter, of course you can't opt to have it done late at night!

[Longtimer in reply to Marijo1951]

Dr said I can do it myself.....I presume a nurse will show me, she is ringing me tomorrow....thank you....

[casca312 in reply to Longtimer]

I was advised to try methotrexate last December when I had GCA relapse with 45 mgs of pred. (.i had started with 45 mgs of pred in Aug. 2018 ŵhen first diagnosed and had reduced to 5mg)

I am now down to 7mg. I was shown how to inject myself ,which at first I dreaded, but now have no problem. However due to fatigue I decided do it at night but still feel equally as bad the next day. I had always felt fatigued with the pred. , in any case, but was hopeful that as the dose was reduced it would improve. So far no change. I can only assume it is a bit of both!

Had a telephone appointment with consultant last week who advises me to carry on so will keep trying. Have to have monthly blood tests which fortunately are fine.

Hope you find the Meth. helps.

[Longtimer in reply to casca312]

Thank you for that, very helpful....like you fatigue has always plagued me.....I always say

we can treat most symptoms, but fatigue..no. Having said that, I have read a couple of times lately that patients suffering long Covid have chronic fatigue, and they must try to see how it can be treated....and not ignore it like they have in the past!........

Hope you have more success.......

[Mollbhan]

I was diagnosed with PMR in June this year, put on 15mg pred which had little effect, diagnosis changed to rheumatoid arthritis. Reduced the pred to 10mg and started 15mg MTX, after 5weeks I have increased the MTX to 20mg and reduced the pred to 8mg, my hands and fingers are weak and pretty useless in the morning, otherwise nothing else seriously affected. I have never seen any side effects from the MTX no sickness or fatigue or in fact anything, maybe I am just lucky but I am keeping my fingers crossed.

[PMRpro Ambassador in reply to Mollbhan]

Do they have better evidence for RA than just that 15mg pred didn't have enough effect? The guidelines say "the lowest effective dose in the range 12.5 to 25mg/day" - even 1mg can make a massive difference, never mind 10mg.

[Mollbhan in reply to PMRpro]

The only evidence seems to be that there was no improvement for about three days after taking pred then matters actually worsened to the point where I could not dress myself or even hold a cup of tea, this was repeated for about four nights and would gradually improve during the day. After a week things improved a bit, I could see that pred did help and suggested increasing the dose but the doc refused saying it could not be pmr. I have seen a rheumy since then who was also pretty sure it was ra and not pmr.

[PMRpro Ambassador in reply to Mollbhan]

That is no evidence of either claim - if 15mg isn't enough, it isn't enough and response to 15mg pred in 3 days is also not conclusive proof positive, some people need longer. If starting pred coincided with an increase in disease activity then that could/would happen. That doctor is obviously not aware of the last lot of PMR guidelines - which after 5 years he really should be. I'm not saying it isn't RA - but I AM saying it could still be PMR.

[Mollbhan in reply to PMRpro]

Thanks for the replies, it helps to converse with somebody more knowledgable about the subject than myself. RA and PMR seem to be very similar ailments, both the symptoms and the medication are similar and both are problems with the immune system. My doctor arranged the appointment with the rheumy who then arranged an appointment with the pharmacist, all agreed the aim is to gradually come off the steroids altogether as long term MTX is supposedly less harmful than long term steroids. The regular blood tests for liver function are a bit of a drag but I cannot complain about the general standard of NHS care in our part of the world. We have little option but to trust the medical experts to get it right.

[PMRpro Ambassador in reply to Mollbhan]

I fear they are all wrong - the aim is to REDUCE the dose of pred. If you have PMR the mtx will not REPLACE the pred, if it did they would be using it. If you are lucky you should get to a lower dose, but there are NO guarantees. I do wish they would present the truth, not what they WANT to believe which is not the same thing.

[scottygirl73]

Im sorry to say i tried tablet and injections of methotrexate but was so ill i had to stop,i still have problems with my stomach 2 years layer.But everyone is different you don't know till you try.

Good luck.xx