Little bit of light at the end of the tunnel with mtx - NRAS

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Little bit of light at the end of the tunnel with mtx

Garnacha profile image
18 Replies

Hi All, hope you’re all keeping well.

I took my 12th week of mtx last night, I’ve been on 15mg for 8 weeks & 4 weeks on 20mg. Saw the rheumatologist on the 19th January & said there was still little difference in the pain, he gave me a steroid injection in my elbow & said to give it 4 more weeks, I was a bit like ok but I’m on my 10th week already with little or no difference, however when I woke this morning my elbow actually felt much better, still tender but, baby steps, at first I was so happy thought ooh I can go in the garden & get some of those weeds out hahaha, however on moving around & doing a cup of tea, having a shower etc it’s tender again but at least it’s a good sign, just wish it would have some effect on my hamstring but it is definitely hopeful.

I saw on a post earlier this week that mtx builds up in your system? I’m hoping this is the case & things are on the up.

Anyway thought I’d share my good news on this wet & windy Saturday x

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Garnacha profile image
Garnacha
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18 Replies
Summerrain14 profile image
Summerrain14

This is lovely to read. I am so pleased for you that you are getting some much needed relief. Long may it continue for you x

stbernhard profile image
stbernhard

I am very happy for you. It looks as if you are on the right way and have a positive attitude. Upwards and onwards. Just don't overdo it as soon as you have less pain. It's easily done 🙂

Garnacha profile image
Garnacha in reply to stbernhard

Thank you, yes definitely not planning on overdoing it 🙂

GinnyE profile image
GinnyE

Hi. I've been on methotexate for two years and over that time the dose has been steadily increased to 20 mg injections due to the odd horrible flare, and I had two instances of steroid treatment when I was rather bad. I've always thought that what I have to aim for is the disease on a low light simmering under my radar. It seems to be working although I had a little flare in my hand a few weeks ago. So you'll be getting there soon I hope and may do even better ! What a pain it is (pardon the pun).

Garnacha profile image
Garnacha in reply to GinnyE

😂 yes exactly 😂 definitely a pain, it’s a bit like 1 step forward 2 steps back but as long as we can keep going forward even if only baby steps, I’ll take that x

Doobie-Doo profile image
Doobie-Doo

Hi, thank you for the info. I was diagnosed with RA in November and am on 15mg methotrexate, just had my 10th dose. So far no improvement and things still getting slowly worse. I was supposed to have a nurse review 2 weeks ago but it was cancelled (dept closed due to COVID) as is my first review with the rheumy at the end of February. Thankfully nothing is too bad and from what I’ve read I just need to be patient so it’s good to know that it seems to be kicking in for you now 😁 I hope things continue to improve for you.

in reply to Doobie-Doo

Keep going with it, Doobie-Doo. See my reply to Garnacha.

Garnacha profile image
Garnacha in reply to Doobie-Doo

Thank you so much, much the same today as before & I hardly did anything yesterday so know it wasn’t over exertion but guessing it’ll be good & bad days till it’s fully kicked in, just wish the hamstring area of pain would ease, the consultant said for me to give it 4 more weeks on 20mg whichll be 15/02 (had already worked out the date Incase there’s been no improvement 😁) fingers crossed I’m on the up but if the hamstring hasn’t improved at all I’ll have to see what’s next, hope yours improves sooner than later x

nomoreheels profile image
nomoreheels

Sounds positive to me Garnacha. MTX, like any other DMARD, takes time to build up, it's not an instant fix so your experience is pretty common. You should really have been told that it can take 12 weeks or a little more if it's going to work. It's quite common to notice some improvements prior to it reaching it's potential though. It can of course depend on what it's expected to tackle & your situation could well be why you're only now feeling it’s potential, & after an increase in dose, which is also common, increasing the dose as disease activity demands.

Hopefully this is onwards & & upwards now for you. It’s always a bonus if you can tolerate MTX as it's also often used as an anchor med should you need to progress onto biologics. Don't be doing too much & unravelling the good work of MTX & the steroid!

Garnacha profile image
Garnacha in reply to nomoreheels

Thank you, & yes definitely not going to undo where I’m at at the moment, I have ordered some resistance bands (not to use yet) to hopefully improve my muscle strength as I understand from the chiropractor that to help with my elbow, forearm & wrist pain, once it’s under control to build the muscles back up x

Congratulations, you have persevered!It took quite a while for the MTX to work fully for me and I was on a low dose of steroids for 8 months, but I've been on MTX alone for 13 months now, and was actually tapering the steroids through teeny-tiny doses for the 4 months before that. I was told I was in remission 17 months ago and currently take only 10 mg of MTX weekly. I don't know how long the remission will last. I'm very glad to have it. I hope your path will be equally good or even better. x

Garnacha profile image
Garnacha in reply to

Thank you, great to know perseverance does pay off as difficult & painful as it can be & hope your remission continues for a long time to come x

Zara0123 profile image
Zara0123

So glad the Mtx is working for you on 20mg. All my stiffness went on 15mg but there was still quite a bit of pain first thing in the morning so after 19 weeks on 15mg I was given 20mg and even thought it took a few weeks but I started seeing a difference on 20mg Mtx. Less pain in the morning. Just had my first long shower standing up today and I feel like I've climbed Mount Everest. It's a achievement. Hope you get better and are able to do more on 20mg Mtx. Have you had to take any painkillers since you were diagnosed with RA. I've been taking Co-codamol for a year now even before I started Mtx. I haven't been able to come off them yet. Hoping i can reduce the Co- codamol soon and come off them completely. Take care ❤

Garnacha profile image
Garnacha in reply to Zara0123

aaw brilliant news about being able to take a shower, little steps and all that but all progress, we don't realise how simple things we took for granted can be massive now :) yes I've been on painkillers too, initially co-codamol on prescription and now gabapentin for a really bad burning sensation which they said was probably due to inflammation pressing down on a nerve, I had to start at 300mg a day of this but at the moment am on 1200mg a day, I think I may have to increase it to 1500mg a day as although it's eased slightly I'm still getting it, I was also prescribed amitryptaline if needed to take at night, at the moment I'm only taking the etoricoxib, hydroxy, mtx & gabapentin lol but at least I have the others if needed just hate taking all these meds. Hope you're able to come off the co-codamol soon but only if you're ok to, you too take care x

Zara0123 profile image
Zara0123

Yes same here hate taking these cocktail of meds. I was someone that didn't take paracetamol. Use to bear any pain and not reach out for painkillers but with RA it's not possible. I hope the inflammation goes down for you. Hopefully now you've moved onto 20mg Mtx it should start working better. Wishing you good health even though we are on meds. I did speak to my Rheumatologist about the Co-codamol but for now he didn't seem too bothered that I am on them. It takes time for the Mtx to work so we do need pain relief. If you don't mind me asking why was it you were taking Co-codamol. I need to take it because I get flu/fever kind of symptoms and I feel achy pain when i move and I feel very cold inside like shivery kind of a feeling in my feet which works its way up my legs. Basically i just don't feel well. Sorry for the question but i know everyone deals with different symptoms with RA.

Garnacha profile image
Garnacha in reply to Zara0123

Hya of course not happy to answer anything 😁 I was in so much pain with the oh not sure if I said I have psoriatic arthritis, that the clinician at the drs gave me prednisolone for a week, I was still in pain & the burning sensation had also not eased, I was waiting for a call from the rheumatologist when the clinician rang & said to also try cocodamol at 15mg/500mg strength as well as amitryptaline, I mentioned to the consultant that I was also taking these as & when needed but that I try not to take them if possible, he was fine with this x

Zara0123 profile image
Zara0123

Thanks for your reply. I hope the 20mg Mtx kicks in real soon and you can tackle those weeds in your garden real soon. Take care xxx

Garnacha profile image
Garnacha in reply to Zara0123

Thank you, looking forward to longer, lighter sunnier & warmer days so that fingers crossed I can go out & enjoy what I love the most messing about with the garden, I’m no professional but just love experimenting, praying I’ll be able to do this, hope you’re pain eases soon & we’re all having relatively pain free days 💕 you too take care, it’s literally a mine field trying to work our way through all this & none of us are the same. I’m so glad I’ve found this amazing support group xxx

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