MTX one of the safest drugs available for the treatme... - NRAS

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MTX one of the safest drugs available for the treatment of RA

Amy_Lee profile image
45 Replies

The safety profile of the weekly low doses used for RA treatment has been studied for over 25 years with very few clinically relevant adverse events. Courses of MTX show some of the longest continuation rates reported in clinical medicine, owing to both its effectiveness and safety. This safety profile makes MTX one of the safest drugs available for the treatment of RA, as well as other forms of chronic inflammatory arthritis.

medscape.com/viewarticle/76...

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Amy_Lee
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keeta profile image
keeta

Hi amy -lee .

Very interesting but mtx was the first injections i went on when i was first told i had RD.

I felt so well when i started it and hand wrists feet etc were not as painfull and swelling went down.

About 6 months into it .i was so unwell started a cough that lasted 12 months.my bloods all dropped .i had liver & lung infections .itu.s constantly .and all cleared when i came off it .x

Amy_Lee profile image
Amy_Lee in reply tokeeta

Dear Keeta,

Thank you for the update. It is really the individual response toward it. Though I did have a lot of side effects but no big deal as compare to how I was being put into remission.

I am very sorry about your situation and may I know what was the next DMARD you had been offered after you were off mtx and how are you doing right now?

Amy

Simba1992 profile image
Simba1992

We all know RA meds all have adverse effects. Mtx has many potential side effects that can be dangerous and longterm use is not without effects on our body. This does not dispute the fact that for many it has been a med that has helped many for variable periods of time. And it is probably true that compared with the other RA meds it usually has less irreversable adverse effects. How I hope that one day there will be a real cure where the autoimmune reaction will be normalized and the metabolic dysfunction reversed.

in reply toSimba1992

According to the Consultant speaking on Rheum drugs on the Nras webinar, many people do well on biologics, but 1:5 do exceptionally well. I didn't listen to it live so couldn't ask, but would love to know how many people do exceptionally well on Mtx. I guess it isn't an even playing field because in the UK you have to not be doing very well to go on a biologic or Jak inhibitor, whereas many people are put on Mtx at diagnosis. Have you any idea, by any chance?

Simba1992 profile image
Simba1992 in reply to

The thing is that statistics on how many do exceptionally well on mtx does not exist. What I have read is that mtx may slow down the progression of RA and that around 60% benefit whereas of these 60% 70% have ongoing side effects. That the duration of being on mtx is on average 2 years. It is also been shown that those put on biologics and mtx right from the start have a chance for nonmedical remission. This would probably be the treatment path for many if it wasn't as expensive as it is.

in reply toSimba1992

Indeed! Back to the rim or side effects V benefits. It has previously been noted on the site that some high profile athletes with RA have been on biologics pronto.Ummm

keeta profile image
keeta in reply to

As i said before .mtx didn.t like me at all been on biologics. Now on a jax. And feeling not pain free but better than before. And yet my daughter has met a man who has been on mtx for years and is fine. And a friend of mine has been on. Mtx for 6 years and he.s fine. So 1 doesn.t fit all .x

in reply tokeeta

True. I know of 2 people who have only ever been on Salfasalazine. They haven'y lived!

keeta profile image
keeta in reply to

Ha ha good way of looking at it x

Amy_Lee profile image
Amy_Lee in reply tokeeta

Dear Keeta,

You are right though. I am on mtx for more than 4 years now and I am pain free before I was declared under remission.

Amy

keeta profile image
keeta in reply toAmy_Lee

I am really happy for you Amy -Lee.

I hope itt stays that way for you.that would be amazing .hugs xxkathyxx

Amy_Lee profile image
Amy_Lee in reply to

Dear Norisa,

Before I started the treatment, when I questioned my rheumy on the side effects, my rheumy told me that it was more crucial to protect my joints first, side effects might not happen to all patients and it would be monitored by regular blood work.

I was very comfortable with the answer and I trusted my rheumy and started the treatment immediately. I was under remission after about 2 years.

Amy

Shalf profile image
Shalf in reply toSimba1992

Money talks!

Amy_Lee profile image
Amy_Lee in reply toSimba1992

Unfortunately, rheumy here will not start RA patient with biologics until oral mtx does not respond to the patient after sometimes.

helixhelix profile image
helixhelix in reply toSimba1992

I can't find the papers where I read this, but I recall the figures were better than that. And the duration was far, far longer! Something like 20 years I think. My memory tells me that on MTX combined therapy it's something like 10% achieve full remission (without drugs), 70% do ok to varying degrees and 20% can't tolerate them.

After all, until this century there was nothing else, as the first biologics was only approved in 1998 and started to be prescribed to ordinary people in 2000.

I would say that I did exceptionally well on MTX + combination for many years. And I'm now hoping that i will do the same on biologics - but of course I am now 8 years older so nothing can roll back that clock.

Amy_Lee profile image
Amy_Lee in reply tohelixhelix

Dear Helix,

Since you are doing well with mtx, why are you on biologics now? Over here, my rheumy told me to stay as what I am now, she always said "eat what you eat and do what you do". I did ask about the biologics but she said that it would be given to those who does not respond well with mtx after sometimes.

helixhelix profile image
helixhelix in reply toAmy_Lee

My RA started to break through and I was on top doses of MTX, sulpha and hydroxy. I wasn't very keen to change, but my rheumy noticed erosions in my neck so no option really.

Amy_Lee profile image
Amy_Lee in reply tohelixhelix

Helix, thank you for the information. I need to take note of this as I am on oral mtx for 4 years already. By the way, how did your discover the erosion in the neck? Did you have any pain on it?

I am glad that we can share the experience to move forward so that we can minimize the damage to ourselves from the experience of other patients.

helixhelix profile image
helixhelix in reply toAmy_Lee

Yes lots of pain, and did an MRI. My RA has always been a bit of a slippery creature, so not a surprise to me really.

Amy_Lee profile image
Amy_Lee in reply tohelixhelix

Dear Helix,

Okay, I will take note of the pain around the neck then. In fact, any pain around should be highlighted to our rheumy.

Simba1992 profile image
Simba1992 in reply tohelixhelix

There are unfortunately so many studies with so many different conclusions as far as the effects of mtx go. Perhaps we really do not have the right statistics because of all the bias. Very confounding and missleading for patients, in my view is this new definition of remission, while at least doctors are quite aware that the progression of the disease is still going on during this remission, even though slowed down for a period. Found this reading quite informative.

arthritis-research.biomedce...

All the best. Simba

helixhelix profile image
helixhelix in reply toSimba1992

Interesting article. I like the more positive statistics for drug free remission! And also interesting that seems more likely in sero negative men - lucky them.

I also do wonder whether studies are flawed because patients don't admit to not taking the drugs as they should. Apparently non-compliance is a big problem with RA.

Amy_Lee profile image
Amy_Lee in reply tohelixhelix

Dear Helix,

Agree with you on this, non-compliance is the biggest problem really. I know some RA patients here continue to visit the rheumy but they do not take the medicines. That gives the wrong impression that the medicines prescribed do not work for them. Some rheumy without knowing the problem, will only increase the dosage or change to other DMARDs. I certainly do not agree with this kind of behaviour. They should tell the rheumy honestly and work together with the rheumy for a better and more comfortable plan.

Amy_Lee profile image
Amy_Lee in reply toSimba1992

Thank you, Simba for the link. It is too late now to read the whole article. Will go through it again tomorrow. However, it is great to know that there is a chance for drug free remission. My rheumy did mention that she will remove one of the DMARDs for me if my condition continue to be good after sometimes. I am a sero-negative RA, I may stand a good chance hopefully.

AgedCrone profile image
AgedCrone in reply tohelixhelix

You're only a youngster HH...I did really well on just Mtx + FA for 7 yrs...then overnight it stopped working & although I didn't immediately get my RA symptoms back ....I had a whole new list of neurological symptoms to deal with.

I have now been on a biologic...RTX....(without Mtx which I understand is the norm)for two years, & it has been really successful.

My only worry is that it will suddenly stop working like Mtx did.

In the UK, according the NICE regulations, Methotrexate has to have been one of the Dmards that has been tried, & failed, together with a Qualifying DAS score, before a rheumatologist can apply for funding to put a patient on a Biologic.

If we are not confused when we start on the RA journey, we sure are as it progresses.

Amy_Lee profile image
Amy_Lee in reply toAgedCrone

Dear AgedCrone,

I am very curious why it worked so well for years and suddenly stopped working? This is the first time I come across this. I will look up for the information again. Thank you for your information, I will have to take note of this.

AgedCrone profile image
AgedCrone in reply toAmy_Lee

Yes my rheumatologist was very surprised ...he is in 50's so has quite a few years experience,& he has never seen it happen quite so quickly before.......Luckily I took matters into my own hands & stopped taking the Mtx after one particularly nasty headache that felt " unusual" & thankfully that was rIght thing to do.

But as one takes it weekly you have time to stop it & get advice before the next dose is due.

Amy_Lee profile image
Amy_Lee in reply toAgedCrone

Dear AgedCrone,

Let us keep our figure crossed, you will be fine.

Simba1992 profile image
Simba1992 in reply toAmy_Lee

This is the case with mtx it works a period of time and then the day comes sooner or later when it no longer keeps the disease process low enough. It seems to be very individual how and how long mtx works or doesn't work. What actually is happening that leads to the med no longer having effect, is not understood.

Amy_Lee profile image
Amy_Lee in reply toSimba1992

Simba,

You are very knowledgeable in this. I will post the question on the behaviour of mtx to my rheumy the next I see her. Thank you so much for all these new information to be kept in mind.

Goodnight.

Amy_Lee profile image
Amy_Lee in reply to

Dear Norisa,

I think I am one of them who did extremely well with mtx, I take mtx orally. I was requested to share my recovery experience in 2 occasions openly. I did one under Arthritis Foundation Malaysia and one under our local hospital that I get my treatment regularly.

Amy

Amy_Lee profile image
Amy_Lee in reply toSimba1992

Dear Simba,

I also hope that one day there will be a good medicine that CURE RA and without any side effect so that we need not take any DMARD after that.

oldtimer profile image
oldtimer

Thanks for posting this. It's so easy to concentrate on the bad effects of something, especially something so widely used.

It didn't suit me, but I know lots of people who manage very nicely on it (it would be even better if they didn't have to, of course!) and lead more or less normal lives.

Amy_Lee profile image
Amy_Lee in reply tooldtimer

Dear oldtimer,

Without mtx, I think I would have committed suicide as the pain that I could not bear then. The GP just gave me some pain killer which did not help me at all. You are right to say that not all suit one, not all respond well with mtx.

Amy

Like all meds it works well for some and not for others.

Both methotrexate and sulfasalazine caused life threatening depression in me. Did nothing for inflammation either.

Amy_Lee profile image
Amy_Lee in reply to

Dear Nettienet,

I am very sorry to know that. What are you on now to control your RA?

That's quite ok Amy. Just one of those things. There are a few drugs my body doesn't react well to. Can't touch antidepressants or anticonvulsants either.

I now take benepali. I don't seem to have any side effects with this drug. Appears to be working too!

Amy_Lee profile image
Amy_Lee in reply to

Great to know that it works well for you. Are you now still in pain?

in reply toAmy_Lee

Hi Amy.

I'm very glad methotrexate works so well for you too.

I have hardly any pain at all now. I do still wake up feeling a bit rubbish, but it wears off after a cup of tea and shower. 😃

Amy_Lee profile image
Amy_Lee in reply to

Dear Nettienet,

I believe, you can do better than this one day. I am almost back to normal self except I do feel that my joints are not as smooth before though no pain and no long stiff. That is the reason why I continue to search for "what next after remission?" as I like to see if there is any further chance to improve the joints and to get rid of DMARDs if possible.

Amy

MajesticMo profile image
MajesticMo

Hi Amy Lee, it didn't do much for me, 12 days in hospital with Pulmonary Fibrosis, and Hair loss so bad I had to wear a wig for 9 months!!

Amy_Lee profile image
Amy_Lee in reply toMajesticMo

Oh, dear! I am very sorry to know that. Not all of us respond well to mtx though it is great for me. How do you control your situation then?

MajesticMo profile image
MajesticMo in reply toAmy_Lee

I'm on Mychophenylate now and that seems to be doing the trick xxxx

Amy_Lee profile image
Amy_Lee in reply toMajesticMo

Great, at least there is something that does well to control your situation. By the way, this is the first time I know this name.

Nanapapa6 profile image
Nanapapa6

beware methotrexate, it has wrecked my lungs and now i have ongoing breathing problems

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