Methotrexate, not for me

[Callabag64]

I have just been watching two videos on NRAS site about people who have found relief from R A with methotrexate, I know many people benefit from this drug, but it put me in hospital for 2 weeks with pneumonitis, I could quite easily have died. I was on oxygen for most of that time. So forgive me for being bitter, but i had no idea what it was doing to my body, and just wanted to make this comment

[AgedCrone]

It’s a great shame Mtx didn’t work for you , but as you saw on the videos it has been around for a long, long time and is still considered the gold standard treatment for early rheumatoid arthritis.

Don’t be bitter about it - it could have happened to anybody and I’m sure you will go on to have successful treatment on another DMARD.

I have never actually been put in hospital by a DMARD but I have had some really rotten side-effects which certainly made me think “Why me”?

Had you had lung problems before this incident? There seem to be no tests ...even Xrays might not determine if Mtx will suit you....so you must now look forward to finding a DMARD or a Biologic drug that will help you,

Sadly RA isn’t a One Stop Drug disease, most us go through half a dozen before we hit The One!

I do hope the next drug you are prescribed is a success for you.

[Callabag64 in reply to AgedCrone]

Have been on most meds, as I have had RA for over 30 years. Embrol was the only thing that worked for me. Had no lung problems previous. Respiratory consultant 99% sure it was methotrexate that did it for me, as my “ new, very young consultant “ had doubled my dose of it 3 months earlier.

[AgedCrone in reply to Callabag64]

That is really unfortunate....what are they going to try now? Can you go back on Enbrel, or did that eventually fail too.?

[Callabag64 in reply to AgedCrone]

Cannot go back on embrel, tried Baricitinib, that didn’t work, now waiting for Rituximab infusion. Most meds are given along with methotrexate, which I cannot take.

[AgedCrone in reply to Callabag64]

I have Rtx without Mtx.....my Rheumy applied for funding saying I’d had such a severe reaction he would not prescribed it & the funding was granted...so it is possible.

[Hidden in reply to Callabag64]

Callabag64, Did you stop taking the methotrexate completely? In other words, are you only on Enbrel? I ask, because I take a combo of methotrexate and Enbrel. I have cut way down on the methotrexate, and I would like to stop it completely.

[Callabag64 in reply to Hidden]

Yes stopped completely, stopped the embrel too.

[Hidden in reply to Callabag64]

Thanks!

[Hidden in reply to Hidden]

And good luck with your infusion!

[Callabag64 in reply to Hidden]

Thank you

[Mmrr]

Not all DMARDs not work for everyone, hopefully next time you will have a better experience. I'm now on biologics and hopefully am beginning to see some improvements, but it has been a bit of a long slog. RD tries the patience !

[nomoreheels]

Sorry to hear this but hopefully your experience serves as a reminder to others to report any uncommon side effects, they can cause issues otherwise. When I first started MTX I wondered if a lung problem I'd had years ago would repeat itself but I'm happy to say after 10 years I remain on it with no related problems.

Hopefully a spell in hospital & appropriate treatment (high dose steroids?) has helped in your recovery & you'll be seeing your Rheumy to work out an alternative treatment plan soon.

[medway-lady]

I sypathise and hope your feeling better now, trouble is all medications have side effects and no way of tellling what and to whom. I'm hopeful that one day a one size fits all will become available until then its in the lap of the gods. As many will know I have kidney failure due to Omeprazole prescribed for RA stomach protection. So its vital to keep saying make sure your blood tests are up to date.

[Cheylann in reply to medway-lady]

I take 40mg omeperzole daily so was horrified to read it caused you to go into kidney failure. Now I'm terrified and will check with doctor next visit.

[medway-lady in reply to Cheylann]

Its very rare !!! like only 60 people in the world known about so don't stress but yes ask for a blood test but they may well be doing that as part of the normal blood tests we have but you just don't know they are. xx

[Hidden]

Hi, I was taking methotrexate and quit on my own. It caused me to lose my hair, bad fingernails and toenails, ,constipation, and more itching on my scalp, l have psoriatic arthritis. My doctor did not want me to do this, she wanted me to try Otelza, this is very expensive and my insurance won’t pay for it. Why isn’t there something people like use that does not cause harm to our bodies. Methotrexate has bad side affects!

[cathie in reply to Hidden]

It can have side effects but if it’s tolerated it’s a useful drug. Not everyone reacts. Sorry you did.

[AnneField]

With you all the way on this one Calla. I was put on MTX in Jan 18, lost around 40% of my hair and spent six months with my head down the loo. My nails looked great though! After a spell on sulfasalazine, I was convinced to try Metoject on the basis that it bypasses the gut. I started this at the back end of December 18 and I'm coming to the end of my third course of antibiotics since then! My liver enzymes are up the wall, my WBCs are obliterated and I feel diabolical! Moan moan moan!

So you have my sympathy and if virtual hugs from internet strangers mean anything to you then here you go ((( ))). Let's hope that the next concoction they put us on is the one that works!

[Callabag64 in reply to AnneField]

Thank you so much, trying Rituximab in June.

[Cheylann]

I wouldn't touch it! Gives relief to some and what damage is it doing?

[Simba1992]

Kidney failure of PPIs is rare but long term use of PPIs has other serious health concerns that have only recently been targeted by research and the medical professionals.

sciencedirect.com/science/a...

[Hidden]

So sorry for that horrific experience! And I so appreciate your honesty as well. Thank you for your post.

[Leonwp]

I collapsed twice on mtx and both times woke up in resus ward. Some people cannot tolerate it.