Methotrexate: Evening all, Yesterday was my first 15mg... - NRAS

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Methotrexate

NathanT profile image
16 Replies

Evening all,

Yesterday was my first 15mg dose of Methotrexate, my diagnosis is still to be confirmed, possible inflammatory / psoriatic arthritis / sero negative. This after the last 4 years of having flare up's in my feet, knee, hands and fingers.

Fingers crossed that methotrexate will work ... how long do people stay on treatment ... would i be right in saying this could be many years if tolerant and it works?

I have been reading various posts, and have found everything valuable, and that I'm not alone.

Thank you

Nathan

16 Replies
Nuttyshirlz profile image
Nuttyshirlz

Hi

I’ve being on it 8 months and Im psoriasis free.I did have a few ups and downs at beginning.But I’m fine with it now and only tip can give you is drink loads of water.cant answer how long you have to take it but has there say how long is piece of string question as each person is different.but yes your not alone.hope it works well for you x

NathanT profile image
NathanT in reply to Nuttyshirlz

Thank you for your message and kind advice ... i will drinks lots of water.

Take care

Nathan

nomoreheels profile image
nomoreheels

Hiya Nathan. Well, I have been on MTX coming up for 8 years. So, if it suits you & manages to control you it can become a long term med. It's having the balance of the dose & supplementing with folic acid that's the key I think. I'm pretty sure many who have to give up on it because of side effects don't manage to get the balance right, have tried reducing the dose or even dare I say they really didn't want to take it in the first place & reticent to try to ease side effects, see it as a way out of taking it. You see it's a marmite med, you're either happy to take it or you're not. Obviously some just can't tolerate it & never will, that's a different story, I've experienced that with sulfasalazine so can empathise.

I had no issues when it was first mentioned by my Consultant, my first DMARD, hydroxychloroquine, had stopped working but I'd known the relief it had given & had started going down hill quickly. I was assured that MTX was very likely to take me back to the near normality I'd had for around a year so that & being given a load of info spurred me on. He started me on tablets, 15mg, & I did have slight nausea to begin with but that soon went, helped by dividing the dose, 2 tablets taken with my meals through the day helped I'm sure. Hair loss became a bit of an issue although it wasn't noticeable to anyone but my hairdresser & me it was enough for me to mention it as my next appointment. He increased my 1 x 5mg of folic acid to 2 & that helped a lot, I just noticed a little more hair in my brush. It was working so it was to my mind an inconvenience, not concerning enough to give up on it.

I changed over to injections when I needed an increase & my liver objected. It meant I could drop a dose but still be controlled & my liver values returned to normal. It does mean that I can't go above 17.5mg as I need to take into account the other meds I take that are metabolised through the liver so have needed to be on double therapy in order to be better controlled but presently just on mono therapy & low dose prednisolone following issues with sulfasalazine & leflunomide. Since I've changed Rheumy I take folic acid every day except the day I inject, no side effects of note except having less appetite & being more tired the following day but that's fine, as long as it works I can cope with that.

I hope it works for you & you find if you do have any side effects they're easy to cope with, or if you're not on max dose folic acid an increase solves them. If you have any other questions I'll be happy to help if I can.

NathanT profile image
NathanT in reply to nomoreheels

Thank you for sharing the amount of time you have been on methotrexate and guidance ... it has all been noted.

Thank you

Nathan

Ellieellie profile image
Ellieellie

I tolerated it for many years and had blood checks every 6 weeks. I found after taking it I was tired for a couple of days but managed well with it. Unfortunately after many years I had to give it up after my liver count rose. Hopefully you will manage for a long time on it. The other effect I found and didn’t really realise that I had until I stopped taking it was that me head was never really clear and that when I stopped taking it it was like a fog had lifted. Good luck with it but if you don’t feel right with don’t hesitate to mention it.

Snoozey profile image
Snoozey

My husband was advised by a long term user to take it at night with food in his stomach, seems to work for him. The only time his nausea is bad is when he doesn't have the food.

NathanT profile image
NathanT in reply to Snoozey

Good advice ... i will ensure i take MTX with food.

Thank you

Nathan

beccab107 profile image
beccab107

Hi Nathan, I started with 20mg and had zero side effects except my hair thinning which is not a side effect I appreciate. I have never been nauseous, tired or anything else from it. My dosage was reduced to 15mg and I'm doing fine. Mr rheumy was talking about cutting it back some more but I'm a little nervous about it.

I think back to the pain and discomfort I was in and how the simpliest movement (raising my arms) would result in pain. I am ecstatic to say I am pain free (do have some slight discomfort on occassion) since taking the MX. I'm in my third year now taking MX.

Best of luck on this journey and I hope you find relief with the MX.

NathanT profile image
NathanT in reply to beccab107

It's great to read that you are currently pain free ...thank you for sharing MTX experience.

Take care

Nathan

Kai-- profile image
Kai--

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If interested 🤔, NathanT, bit of supplement information 📚 on Methotrexate ( healthunlocked.com/nras/pos... ), Inflammatory / Psoriatic Arthritis ( healthunlocked.com/cure-art... ), Sero Negative ( healthunlocked.com/nras/pos... scroll down page). Please take good care, NT. 🙏 Wishing you the best. 😌 🙏 🌺 🍀 🌞

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NathanT profile image
NathanT in reply to Kai--

I love to do my own research, and am quite analytical with certain things ... this will keep me busy with lots of reading and viewing.

Thanks

Nathan

Kai-- profile image
Kai-- in reply to NathanT

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Glad to hear, NT. 🙏 ☺️ If you’re comfortable sharing your eventual assessments (after analysis 👨‍🏫 🔎 📊 ), would love to hear your views! 👍👍 Am interested in thoughtful consideration 🧠 🤔 of information & ideas. Much, much appreciated, NT. 😌 🙏 🍀 🌺 🌞

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helixhelix profile image
helixhelix

I've been on it for 7/8 years with no problems. And there was one person on this site who had been on it for 20+ years. Others have found that after a few years they go into remission and can taper off drugs and stay in remission. I know that doesn't work for me.

RA is a chronic disease so you may well have to take drugs for the rest of your life. But focus on taking things one step at a time, and don't angst too much about what may not happen or may not be needed.

NathanT profile image
NathanT in reply to helixhelix

Great advice ... it's reassuring to hear about real life stories of people taking MTX long term.

Thank you

Nathan

MandaJaneP profile image
MandaJaneP

Hi Nathan, welcome to the weird and wonderful world of methotrexate. I hope you find this group as warm and supportive as I have since I started taking methotrexate about 6 months ago. I too find taking my tablets in the evening after a meal minimises side effects - just feel a bit queasy the next day. One other thing to remember is to cut down your alcohol intake (if you drink) as the drug is processed by your liver as is alcohol. The advice on amounts varies so ask your rheuy about what's safe for you. Cheers....

NathanT profile image
NathanT

Thank you for your advice ... my short time on this group has been really positive and was just what the Dr ordered ... the advice and support so far has been amazing.

Thank you

Nathan

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