Does methrotrexate work for everyone?: Hi all, i'm... - NRAS

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Does methrotrexate work for everyone?

carolineo profile image
28 Replies

Hi all,

i'm very new to this site, just wondered if anyone else has had no improvement to RA whilst taking methrotrexate. I started methrotrexate in July this year starting on 7mg which has increased to 25mg, i am also on hydrochloroquine and steriod injections. I am back to see the rheumy in the new year at my last app he did mention maybe trying biological drugs.

Can ANYYYYYYY ONE HELPPPPP!!!!!!

Any advice welcome

Carolineo

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carolineo profile image
carolineo
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28 Replies
juju74 profile image
juju74

Hi there, methotrexate and hydroxy didn't work for me, I am now getting a rutiximab infusion and self injecting methotrexate. Still getting steroid Injections so can't tell you if the infusions and that are working yet. Good luck with your Rhuemy and biologics. Xx

carolineo profile image
carolineo

Hi JuJu74, thanks for your reply, how do the rutiximab infusion work? do you think the methro injections work better for you? has it taken you a long time to get any pain relief from medication you have been put on.

thanks Jujuxx

This combination have worked really well for me but I did find that there was still some disease activity until my rheumy switched me to injectable MTX and that seems to have brought down the inflammation at long last. I'm not sure why it's made such a difference for me but it really has. We are all so different in what works and how RA affects us. The biologic drugs are meant to be life changing for people and the only problem seems to me is that many people take so long to qualify for them because they are so expensive. If you get offered them then I recommend you take them like a shot as they will hopefully sort out your RA in a way that MTX and Hydroxy obviously haven't. The only other thing that I can suggest is that there are other forms of inflammatory arthritis such as PsA and AS which DMARDs don't really cut the mustard with and only biologics/ anti-tnf drugs really help. Also there are conditions such as fibro which you can have as well as RA and which the DMARDs wouldn't touch either. But assuming you have a good consultant and a very clear case of RA then it seems you must just need different medication. Tilda x

carolineo profile image
carolineo in reply to

Hi Tilda, thanks for your reply, i also have fibromyalgia which the the rheu told me is secondary to the ra. you mentioned inflammatory arthtritis PsA and AS what form of arthritis are these?

thanks again

Carolineo xx

in reply to carolineo

They are the Spondyloarthritis family which is still inflammatory arthritis and still autoimmune I think and also come in the same degree of seriousness (or mildness) as RA but respond less well to DMARDs compared to RA. Two ate Ankylosing Spondylitis and Psoriatic Arthritis. Worth looking them up as they are rarer than RA and both sero negative for rheumatoid factor but there are people on here with these forms of inflammatory arthritis so perhaps they will explain if they see this thread.

Tilda, what are you doing still up and about! You should have gone to bed - Ruby will have to be sorted out by someone but not you! Hope you all get a decent night's rest, XX Virge

in reply to

Ha ha well is come back from singing in concert and found both dogs and both teenage sons all up watching early James Bond movies! Sorted dogs, cleaned up remains of dinner and went to bed but couldn't sleep because of movie night sounds down below so gave up and came here for a bit!

Hope this explains my late night presence Virge? TTx

Dear Carolineo, what a saga! Have you tried injecting MTX via Metoject? You get more of a 'hit' as it bypasses your digestive system. You are taking a bucketful of drugs so it might be worth a try. I also like it, as mentally I am doing something positive and not just chucking horrid yellow pills down me. Injecting means I don't feel sick etc anymore and I feel more in control. If you feel that MTX etc are not doing their job, stick out for anti-tnf/biologics. I must admit that at the moment I feel brilliant (even though I am bouncing off the walls as I am on a double dose of pred for a couple of weeks and would actually opt for this as opposed to another dmrad or anti-tnf). Have you tried a bigger hit of pred orally.I hope you can get sorted, take care, Virge

carolineo profile image
carolineo in reply to

Hi Virge,

thanks for your reply, i havent tired injecting, i will mention this at my next app. I have had a lot of predisone injections over the last six months the rheu is not wondered about me having so many, he is wanting to try to settled things down so i can go longer without them in the future but they only last about for weeks.

all the names of the medication is new to me and im tirying to get my head around it what medications fall under dmard 's?

I know its probably just trying to be patient until they find the right mixture of medication to suit me, but this seems so far off when your having a bad few months and nothing is working..

thanks Carolineo

alicn profile image
alicn

Hi, I was diagnosed in Sept and have gone from 10mg methotrexate to 20mg metoject-(injectable mtx)and 2x200mg hydroxy reduced now to 1x200mg and also reduced my oral steroids down to 5mg and finally im noticing an improvement in my ra symptoms. Much less pain and swelling and more function. Not fully there yet but much better than a month ago. Has tbh coincided with changing to the injectable mtx as i did 2 weeks oral 20mg but was v sickly and they swopped me to the metoject which i have heard gives you a bit more of the true dose as it gets into ur system pretty much straight away rather than losing some potency by absorption via the gut. So..may be worth looking at metoject and maybe hanging on in there for a bit longer but i appreciate totally your frustration! Good luck x

alicn profile image
alicn

Virge-think we were writing same thing at same time!

in reply to alicn

Great minds think alike, while fools seldom differ..... or something which my English teacher used to say!

earthwitch profile image
earthwitch

Great that your rheumatologist is thinking about biologics. They can be absolutely wonderful for a lot of people, and while there are some very rare serious side effects, in general they just don't have the kind of side effects that a lot of the DMARDs have.

carolineo profile image
carolineo in reply to earthwitch

thanks earthwitch for your reply, what are the side effects firm the biological drugs? This is all very new to me, i have learnt so much over the last few days from reading through the blogs.

thanks carolineo xx

Josie2 profile image
Josie2

Sorry to say but i just couldnt tollerate mtx!

Took mtx and was totally wiped out for 4 days after!

I, not rheumy, decided i couldnt go on living a 3 day a week normally as i needed to go to work, run a family home ans have an 11 year old to take care of, didnt add up!!!

sparkymac profile image
sparkymac

fascinated by all the various treatments available. I was diagnosed with RA in October 2011. Had immediate steroid injection, then a month later put on 10mg MTX with 5mg Folic acid. Was also taking buorenorphine, 200mcgs and diclofenac 100mgs for osteo arthritis. World went mad 4 months ago as ALTs went 71, 71, 89, and 167. !st, stopped the MTX, 2 days later stopped the diclofenac,(anti inflams) now got the osteo pains back but can live with that. Waiting for RA problems to return. Told to take paracetomol for now. Yummee!!!! Looking at what some of you good people are suffering and taking orally or via injections, I think I'm lucky. Will try to talk wife into hypnotising me when things get rough. After all, she's turned my mind on its head many a time over the last 48 years. A quick smile and she makes my knees turn to jelly. Maybe a romantic suggestion will drive thoughts of pain clean out of my mind. Must give it some thought. Have a good day all of you. Toodle pip.

TishG profile image
TishG

Hi Carolineo, I was diagnosed with RA two years ago. I am on MTX 20mg, Hydroxychloroquine 2 x 200 mg and Prednisolone 4 mg. Luckily for me this combination has worked for I now feel much better. No doubt I had a tough time when I first went on MTX but I'm glad I persevered because it seems to changed my life. I still get awful back pain but that is more to do with osteoarthritis of the spine.

carolineo profile image
carolineo in reply to TishG

Thanks for your reply TishG, is the Prednisolone a steriod injection?

hiya, didn't work for me niether and was offered a biologic called enbrel, changed my life, 95% better now :) hope you get something sooner rather than later!

carolineo profile image
carolineo in reply to

Hi Wiliby, thanks for your reply, how is enbrel medication taken.

thanks Carolineo

in reply to carolineo

weekly by epi-pen, i did panic about side effects however it's been nothing short of a miracle for me.

hopalongrider profile image
hopalongrider

MTX doesn't work for everyone but I believe it has done great things for a lot. I was on MTX for only a short while, the side effects started almost immediately and I didn't get any benefit as the dose was so low. I have used Humira and that was OK, did have side effects so went onto Enbrel- fantastic! No real side effects just better RA control!

carolineo profile image
carolineo in reply to hopalongrider

thanks for your reply hopalongrider, what sortof medication is Enbrel?

Carolineo

hopalongrider profile image
hopalongrider in reply to carolineo

Enbrel is an anti-TNF like Humira. I just wanted to clarify, I have had no really problematic side effects, I am sure the drug does case side effects in others, anything that can work will have drawbacks!

hopalongrider profile image
hopalongrider in reply to hopalongrider

Oh, I inject Enbrel once a week. It took a bit of getting used to! I prefer syringes to epi-pen. Had epi-pens for Humira, I don't know what they are designed to stab through ( Kevlar coated Rhino hide maybe!) but with syringes I have better control and I can angle the needle not to catch muscle in my tummy.

carolineo profile image
carolineo

Hi all thanks for all your replies it is comforting to know that i'm not sufferring alone, i think i just put so much hope into the methrotrexate. Alot of the replies make sense, with the injection form of methrotorxatebeing more potent as its not having to by pass the digestive system.

Its all so new to me it hard to understand all the different medications, where do you find out about diffferent meds, is it through your rheumatologist?

thanks again for all your replies, with being active on the site, i have learnt so much from you all in the last few days, everyone seems so supportive and understanding of what one another are going through.

Carolineo xx

helixhelix profile image
helixhelix in reply to carolineo

have you looked at the NRAS website? Www.nras.org.uk Full of useful things that you can rely on, unlike some of the other sites that just scare you silly. Polly

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Carolineo

Helixhelix just beat me to it! I was going to suggest you might find it helpful to read our 'Getting Established on DMARD therapy' article which goes through all of the different disease modifying anti-rheumatic drugs (or DMARDs) used to treat RA. I have included a link to this article below, also to our 'Which drugs are used?' section which talks about medications for symptom relief as well as the DMARDs, and also to our 'Newly Diagnosed' booklet which can be downloaded from the website.

Getting Established on DMARD therapy: nras.org.uk/about_rheumatoi...

Which drugs are used?: nras.org.uk/about_rheumatoi...

Newly Diagnosed: nras.org.uk/help_for_you/pu...

In the 'Which drugs are used?' section you can find more information about all of the DMARDs - including the more conventional DMARDs and the newer biologic DMARDs which your rheumatologist has mentioned. It can take some time to find a medication or combination of drugs that really suits you well and gets your RA under good control. I hope your rheumatologist is able to discuss options with you soon if you feel your current combination isn't working well enough. There's loads of great info from the folks on here but if you would like to discuss anything further you can always give the NRAS Helpline a call on 0800 298 7650 or email us: helpline@nras.org.uk

Kind regards

Sarah Kate

NRAS

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