Methotrexate success stories very nervous !

[Stiffsteveo]

Hello everyone just joined this community hope you can welcome me in , im 26 and starting mtx tomorrow evening i have psoriatic arthritis and finally after 6 years of misdiagnosis as depression etc i finally got a full body bone scan and was diagnosed , iv had my prescription 4 months scared to take it could you please share how it helped and aslo important how it didnt help thanks people.

[nomoreheels]

Hiya Stiffsteveo, welcome. It is something that divides, the starting of taking MTX. I think it's possibly more of a big deal if it's your first experience of a specialist med, a DMARD, although it is considered the gold standard for RD, PsA & associated rheumatoid conditions which of course makes it the one most often prescribed first.

I have seropositive RD but it's use is the same in PsA. It was my second DMARD after hydroxychloroquine stopped working so I didn’t really think about it, I just wanted to regain the control HCQ brought previously & get back to living life without the pain! I've been on it since 2009, initially tablets but injections for 11 years.

No different to any other med it can come with side effects, some ok some not so ok but you won't be asked to remain on it if it's not the med for you, there are options available to your Rheumy. Unfortunately there's no one med that works for all in Rheumatology & it can in some cases mean you need to try out a few but hopefully once MTX has been given some time you will see positive results & that won't be necessary any time soon.

What's usually said is it can take up to 12 weeks to be effective but often improvements are noticed before then. I’ve had good results with tolerable side effects. Folic acid is coprescribed to help some of the more common ones, MTX being an anti folate we need to replenish what MTX takes. Typical ones are nausea, mouth ulcers, upset tum, not necessarily any or all of them but just so you're aware. Some find that if they do have common ones they lessen or even go the longer they're on it. I take 5mg folic acid 6 days, my current Rheumy's preference in order to enable her patients to be ok to continue on it is my guess! We don't take it on MTX day so it doesn't replenish the effectiveness of the dose.

I'm sure others will be along to share their experiences of MTX. They will differ but remember that your Rheumy has prescribed it to you because he believes you'll benefit from it. He may well wonder why he's not had sight of drug monitoring blood tests with you not having yet started it.

Oh one more thing, I don't know what instructions he gave you about taking it but my Consultant recommended I took my initial 15mg dose divided throughout the day with meals so I took 2 tablets with breakfast, lunch & evening meal. This way he said I should reduce any side effects, & it did. I had some hair thinning in the first few weeks but my one folic acid taken the day before was increased to the day after as well & it settled. Only my hairdresser & myself noticed but it can happen. If you've not been told to take them a specific way maybe that's worth a go. Some are told to take it at night but I was advised against that as he considered sleep was important in RD & potentially being it broken by side effects wasn't a good idea. It's best to choose a day where you can take it easy if you don't feel so good the next day. There is something some call a MTX hangover, when you don’t feel so well the following day but not everyone has it. As it's only a once a week med one day isn't too bad I don't think, not if it's doing what it should the other days. You may find your dose alters further down the line. Some Rheumys start patients on a low dose, others on a high dose, & either increase or reduce the dose to find the one you're best controlled best on.

Do bear in mind what you may read here, & this applies to any med, isn't necessarily a generality or what you'll experience. We all respond differently & most people on forums are there because they aren't doing so well or like yourself newly diagnosed. As long as you keep perspective you'll hopefully find it helpful, though we can only share personal experiences of course.

I hope some of this helps & when you do start it hopefully you'll have nothing of whatever was stopping you taking them, & you'll wonder what the fuss was about. It might be helpful to have a look through the NRAS website, lots of helpful tips there too nras.org.uk 😊

[Stiffsteveo in reply to nomoreheels]

Thanks so much for lengthy reply it means alot to me starting my meds today iv taken all off your advice and points on board , i was planning on taking my 15 mg dose all at once before bed but am now going to split the doses into two much appricated

[nomoreheels in reply to Stiffsteveo]

You're welcome. Forgot to mention ramp up your water intake on MTX day, & other days if it's normally low. It helps. Limit your alcohol too if you do drink, try not to anyway for the first few weeks, none on MTX day if possible. MTX can elevate liver values & with the addition of alcohol may give an incorrect reading in your drug monitoring bloods. If you're doing dry January it's the perfect time to start your MTX!

[Boxerlady]

Welcome!

Methotrexate was my first medication along with Hydroxychloroquin when I was diagnosed in 2019. I've had no real problems with it apart from the famous hangover which hits me about 24 hours after taking it. I started on tablets but moved on to injections when I needed a stronger dose and am currently on 20mg. Sulphasalzine was added last year at which point things really improved joints-wise. However, when I paused the Methotrexate for 3 weeks recently, my joints really deteriorated which surprised me as I didn't realise how well it was working for me. Lesson learned! The good news is that after a couple of doses things improved again.

I did have some initial side effects which I reported to the rheumy nurse and my Folic Acid was increased from one to six days a week and that really helped.

Please do give it a go; as nomoreheels has said, it is considered to be the gold standard and anything is better than permanent joint damage - we're so lucky to have these medications available to us. Hopefully it will work well for you but if it doesn't, there are plenty of other options.

[helixhelix]

To keep it short, methotrexate is my best friend. I wouldn’t be without it. It has given me a normal life back and I would physically assault anyone who tried to take it away from me!

Try it.

You can stop as easily as you start if it doesn’t suit you.

[Bella59]

It is normal to feel anxious when starting out on meds.If it makes you feel ill let rheumy clinic know.This med works for some people but we are all different.It can take a while to find meds that agree with you and work well in suppressing inflammation.I am still living in hope of taking a med that will work for me.Good Luck.

[Feelingpoorly]

Hi I totally understand your nervousness! I can remember looking at these tablets and feel very scared but I knew that I couldn’t continue without some help! I took these tablets in the evening after a meal and started on a reduced dose increasing over a few weeks to the prescribed dose - I’m happy to say methotrexate has worked for me so far - yes there are some side effects which seem to vary from person to person. I also take folic acid 5/6 days a week (definitely not on same day as methotrexate) my consultant has suggested a switch to injections which I am considering. I can say that to date methotrexate has restored my mobility that I had lost and I am virtually pain free - I’m still early in my journey so some refining of medication may still need to happen. I suggest that you take a deep breath ……..part of taking these tablets is also an acceptance and recognition of the illness that you have……..and trust your rheumy team and consultant - we are lucky as we have many treatment options open to us so if this doesn’t work then let your rheumy team know, they are there to support you and will work with you until you find something that works for you.

Good luck ♥️

[janmary]

Welcome to the group. I have sero positive RA and been on MX for 11 years now - tabs first, which I couldn’t tolerate, since then on injections. Would not be without it as it has worked well for me ( although I was very resistant to accepting that I needed it originally)I get a headache if I don’t drink enough fluids on injection day, otherwise its fine. Good luck -

[Langers2]

Hey!I was diagnosed with rheumatoid arthritis at the end of Summer, and have been on methotrexate since then. It's been a godsend! I use to have sleepless nights because, what felt like every single joint was aching, and I was hobbling around, since then other than the odd flare up, I feel "normal" again, to the point where I can go out running again.

These meds scared me too, they still do. Rheumatologist started me on 10mg, but after a couple of weeks I had to email them as I was still aching and he upped my dosage. Your bloods will be regularly monitored, so don't be scared. Enjoy your new life! Hope it works for you x

[Ninnin67]

Hiya i was just like you really nervous,had advice from here and just took them. No problems at all apart from hangover 24hrs after but its just odd sleeply yuky thing. Sadly i now have to take another drug but still on metho. Good luck oh night time better 4 me i found

[smilelines]

I only lasted three weeks on methotrexate as I had such bad stomach cramps I couldn't sleep. I went off it and the cramps stopped. No big deal. I am just like you though as I am afraid to try new medications but once I am on one that works these scary feelings change to fondness and gratefulness towards the medication. Honestly! Total transformation of thought when it works and you feel great. I hope you try it.

[Need2knowN]

Welcome! I was diagnosed 3 years ago now and was terrified about what my life would be like, I did try methotrexate, I was allergic so I stopped and it was fine. I’m on Leflunomide now and still no damage which is my focus! As a young person, check out Arthur’s Place if you haven’t already! I’m nearly ageing out now at 33 but im still about!

[stbernhard]

Hi and welcome to the forum. MTX is a success for me. In it for 11years and in s low dose which keeps me going when I have to stop biologics. Go for it, you have nothing to lose. Good luck.

[Amandaazz]

Hi! I was diagnosed with Rheumatoid arthritis on 26th October 2021. I can't explain the pain I was in all over my body, or the swelling, it was off the scale 24 hrs a day. I started methotrexate on 27th October, quite scared to start it. Thank goodness I did though! It took about 6-8 wks to really take effect, but it's worked wonders. I am nearly pain free and wake up being able to walk and use my hands! I am back to my usual pace of walking and doing yoga every day (on a reduced level than before but getting there). I am switching to injections today though as my tum is a bit acidic since I went on it. No hair loss and no ulcers or any other side effects so far (apart from being tired for about 24 hrs after I take it). I hope it works the same for you 🤞

[Gymcactus]

Hi welcome, very good advice from all, I was diagnosed 5 years ago and put on max dose of methotrexate which got me mobile again. Had the hangover effect day after but worth it, my dose has since been reduced to 15mg a week and folic acid once a week. Sulfazalozine has been added and I can do all that I want to, but you do have to be careful not to overdo things. Your bloods will be monitored very regularly. Good luck.

[SueBaker]

I was put on methotrexate for RA almost 14 years ago. I've been lucky and had no side effects at all. At around the 10 year mark I had a major flare that couldn't be controlled, the MTX no longer seemed able to keep it at bay. They tried adding in a few of the other DMARDS that really made no difference at all, after a while I was put onto Benepali that I inject once a week, but kept on the MTX all the way through; when I asked why I was still taking it as it had stopped working, the doctor told me that I would still be getting some relief from it plus it makes the bioavailability of the other medicines better, in that during the trials people had better results when the biologic was taken alongside MTX. So I'm now at 14 years taking both MTX and Benepali weekly. No side effects, and whilst I do get the odd twinge in my wrists or fingers, that deep seated agony in the larger joints has gone. When the pain was bad, I could do nothing other than think about it, it was really bad. Taking MTX and then the addition of a biologic, has meant I could continue with life as I had before.

[Hidden]

Happy New Year - I have had full blown RA for 20 years and Methotrexate was a drug I was prescribed near the beginning. It did not suit me due to uncomfortable stomach nausea so had it changed to a different drug. I have been on Nsaids, Dmards and finally Biologics. I think you will find that you need to try it out and monitor yourself carefully whilst living a normal life also. Everyone can have a different experience it depends on how you tolerate each drug. Never worry about speaking to your specialist team about any concerns- sometimes side effects can be minor or severe so do be body aware and Good Luck.

[Ritaritis]

Good morning, hope you have a good year, personally I've had no problems with MTX. It was the first drug I was given after diagnosis and have been taking it for about a year. Good luck🐕🐕

[KittyJ]

I’ve been on mtx for 20 plus years and it made a great difference to me when I started it although it can take a few months to start working. I was scared too as I’d read up about it but I’m so glad I did take it. You have to remember that every drug will have a long list of possible side effects, even paracetamol but that doesn’t mean you will get any. Also remember that sites like this tend to have people who are struggling with their disease or meds and the ones doing well on it are off living their lives and not posting so often. Of course unless you try a drug you don’t know if it’ll be the one to give you your life back so give it a try, you don’t want to carry on suffering when you don’t need to. We will be here for support when you do. Welcome to the group too 😊 I hope you find it useful 🤗 Let us know how you’re getting on.

[ketiv74]

Hello and welcome, I have sero positive RA , was diagnosed in 2018. Mtx was my first drug and it worked very well for me. No side effects. I chose to go with injections which allows me to be on lower dose than tabs. Its considered gold standard for RA treatment , so definitely has potential. I was as nervous as you when I first started but all my fears went away soon. Hope it works wonders for you. Make sure to drink plenty of water & take your Folic acid supplement. Good luck!