How long until you notice an improvement on MTX? I ha... - NRAS

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How long until you notice an improvement on MTX? I have been counting down the weeks since I started MTX...I hope it works soon.

21 Replies

Took my 4th dose of MTX on Friday and I still do not notice any improvements in my swellings and pain. I was told it may take 12 weeks or so but I was under the impression I should start to feel a slight improvement soon. When did you start to notice any improvement?

Started to feel down in the dumps yesterday so my hubby took me boating. Here is a picture of the White Rock pier. I just love the water.

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21 Replies
sylvi profile image
sylvi

It can take up to three months to really get into your system and it could work sooner,but they say three months darling.xxxx

in reply tosylvi

The child in me wants to say,

"Well that sucks, Sylvi"

The adult in me has to say,

" Yes, all good things in life takes time. We learn to appreciate life the longer we wait....."

All the best to you Sylvi xxoo

Sue :)

JacquiThomas999 profile image
JacquiThomas999

Eight months down and still waiting for a change, had Hydroxychloroquine added 2 months ago. Back to see Rheummy consultant beginning of September, I hope he comes up with something. But it may work for you, everyone is different. Good luck.

in reply toJacquiThomas999

Hi JacquiThomas999. 8 months in and no change eh? That's what I'm afraid of. I have lived through 1 1/2 years waiting for sulpha and hydroxy to kick in.

I hope they find something soon for you.

helixhelix profile image
helixhelix

All in all it was a year before I really turned a corner. But there was a bit of a magic moment after 9 weeks on reasonable dose of MTX when I was able to make a bed without wincing in pain.....

in reply tohelixhelix

I'm only on 10 mg of mtx, 3500mg of sulpha and 400 mg hydroxy. What is the normal dose of mtx?

helixhelix profile image
helixhelix in reply to

'Normal'? With this disease? Who knows!

By the end of my first year I was on 20mg of MTX, 3000mg Sulpha and 400mg hydroxy. That worked for me..... And I've now managed to drop down to 1500mg Sulpha, so all going in the right direction. But I started at 10mg MTX and worked my way up gradually.

From the stories of people on here it seems that those just on traditional DMARDS, not with biologics, are most often on 15 - 20mg, and up to 25mg.

Downtime profile image
Downtime

It was probably more than 6 months before I felt OK. I did start to feel a bit better after 2 months or so though. I hope it starts to work soon, but let them know if things don't settle. They usually give you steroids as well at first, or at least ask you if you want them. It's a good idea to take them as they help to keep the inflammation down while the MXT starts working and can improve the longer term chance of remission.

in reply toDowntime

Thanks for your reply. I wish I could take steroids, but I had a rare reaction to them. I began to hear voices...Quite scary I must admit.

JEM95 profile image
JEM95

My MXT dose was increased to 22.5mg about 12 weeks ago, and I started to feel a little better after about 10 weeks. It was a similar amount of time when I first started MXT. I had about 18 months of feeling pretty good - but the last 9 months have been pretty poop again. Seems to me like there is no instant answer (apart from the short term temporary relief of a depo injection). Hang on in there - my journey so far has taught me to follow advice/instructions and in time things will get better.

Wretched RA!

in reply toJEM95

Yes Wretched RA!!!

We have no choice but to hang on and hope the drugs take effect. I know I just need to take one day at a time, but that's easier said than done.

I'm going to make myself a cup of tea and stop stressing out about things I can not control. Only time will tell.

I hope your remission will last along time :)

All the best to you

Sue

Sheila_G profile image
Sheila_G

Sorry you are struggling. I am afraid as Sylvi said that it can take 3 months to start working. If you think about it and I am sure you don't want to, the drug needs to get into the system and is slow release because it is a strong drug. It would be too much of a shock to the system if it worked very quickly. You may be lucky and it starts to work much sooner. We are all different and nothing is set in stone either with the disease or the drugs. I hope you get some relief soon. x

Newjobnewlife profile image
Newjobnewlife

It took about 16 weeks for methotrexate to work for me.

I started on pred and sulphazalazine also and became anxious and resistant to any advice or dose increases- I believed I would be left with my swollen painful joints and poor memory and concentration for ever-I became so focused on dates and how I was feeling-it all seemed impossible really .

My Rheum team were realistic and told me it could take anything from ten to 16 weeks to notice improvement .I remember being in a very dark place -HOWEVER......

It did start to improve and I recognise my hands and feet again and am managing anything which comes my way-pretty much!

I actually went in the sea on a day away-and things are still improving-

When we are given this diagnosis -so much seems to be taken away-but hopefully bit by bit it can return .

Good luck!🌻

in reply toNewjobnewlife

Oh Newjobnewlife, I too am focused on dates and meds. I am just so anxious to get my life back. I would just love to recognise my hands, feet and knees again.

I've been dealing with this uncontrolled RA for 3 years and the meds so far have not worked. I feel I have placed all my hopes on mtx.

Whenever my anxiety gets the best of me, my hubby takes me out on the water. I feel so free there.

Newjobnewlife profile image
Newjobnewlife in reply to

I know it's tricky but anxiety can make the disease worse.

I spent the first few months on meds thinking what I have lost

Try if possible to talk and think about other things.

I really didn't think that I would improve and that " they said it would be better by now"

It was a gradual realisation that the stiffness was less and the swelling was going down.....

I really hope it gets easier...

Take care 🌻

in reply toNewjobnewlife

Yes anxiety does make RA worse for me. I actually think extreme stress was my trigger for RA.

A good friend came over today and took me out for lunch. She noticed that I have been on "edge" lately and wanted to cheer me up.

It's amazing what a chef salad and a piece of pie can do for me. So I have to wait another month or two to see if this drug works. I have no choice. Am I going to worry and make the next couple of months a living hell?...not my style...I've had my time moping around, now it's time to lick my wounds and move on. I have a wonderful life, a loving husband,2 grown children and a monthly paycheque. C'est la vie. Tomorrow is another day.

Thank you all for your kind advice,

Sue

Craftaholic profile image
Craftaholic

I don't feel any different effect after taking MTX

in reply toCraftaholic

That's what I'm afraid of Craftaholic. Another failed drug.

Karen77 profile image
Karen77

Not to be the wet blanket, but when I first was diagnosed and started MTX, I was on it for 7 months with NO RELIEF. In fact, my symptoms continued to worsen and every day felt like the worst day of my life, like it couldn't possibly get worst, and then it did, EVERY DAY. I didn't get any relief until I started Humira and it was like magic. I felt better within days. Within 3 months of Humira I quit my pain killers and started back at the gym. I felt amazing - almost better than my pre-RA life. I thought the MTX was useless and tried to slowly reduce it and once I got down to 2 pills (5 mg) - about 14 months after starting Humira - my symptoms started to return. So that was my proof that MTX actually *was* doing some good. MTX and Humira together kept my symptoms at bay (in fact, I felt "normal"), but have now been off MTX for 6 months now due to persistent high liver enzymes and the Humira cannot do its magic on its own. Hoping to start Arava next week (need a "normal" lab result), but it is supposed to take 4-6 weeks (and I expect it could be longer since NOTHING seems to work magically - except for the Humira!), so patient I must be.

RA really is an exercise in patience and it sucks. Good luck.

in reply toKaren77

I know how it feels karen77 to take drugs for RA and they don't work. My mild RA has progressed while on sulfa and hydroxy.

I am normally a patience person, but this RA is pushing me to the limits....I know I just have to play the wait and see game. Whatever will be, will be.

I hope they find something for you soon Karen.

Karen77 profile image
Karen77 in reply to

I've decided that people with RA are typically Type A Go-Getters lacking patience. This drug - and the laundry list of DMARDs, biologics, etc - test our patience to the upper limits. The worst is getting diagnosed, doing the google search and reading that you need to treat it quickly and aggressively and then you can't even get a meeting with your rheumatologist to discuss your treatment or have them explain to you 1) how long it can take to take effect 2) what you should do in the meanwhile 3) what requires patience and 4) what requires a phone call to the rheumatologist to get squeezed into the schedule. There are too many unknowns and it's not fair. I feel that, 5 years in, I am more prepared for all of this, but I still think it's grossly unfair for the newly diagnosed and it's no wonder that depression is a common experience for them (as it was for me).

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