Methotrexate Experiences: Hi All, This is my first time... - NRAS

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Methotrexate Experiences

14bubbles
14bubbles

Hi All,

This is my first time posting on here, only found this site this evening. I was diagnosed with non specific inflammatory arthritis 4.5 years ago. I take hydroxychloriquine and I have tried Sulfasalazine but had to stop taking it after having a bad reaction to it. My rheumatologist has mentioned the possibility of trying methotrexate which I am unsure about as the only experience I've heard about is my dad, who hated it. I was wondering if anyone would be willing to tell me about their experiences of taking methotrexate? Thanks.

25 Replies
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I have been on Methotrexate (15mg) for Psoriatic Arthritis for about 18 months now, and am pleased to say I have not suffered any side effects on a day to day basis. My only issue is that it has had a bit of a negative impact on my liver, but while this gets flagged up by my GP surgery after every blood test, my readings are still within the acceptable range for my Rheumy. I don’t take any other meds for my PsA, and although pre MTX my flares were fairly intermittent with many months between them, I haven’t had a flare for two years now, so it’s surely doing its job.

As I understand it, far more people take MTX without any issue than those who do have problems, but of course everyone’s different, and you really just have to try it to see if it’s for you. Hope this helps!

Hidden
Hidden

Hi,

I have been taking Methotrexate (10mg) for 9 weeks. I tried Hydroxy first as I didn’t want to take MTX. However, I had an itching reaction to it. I have minimal issues with MTX, apart from feeling tired the next day, and a bit “off” after taking it. I’m possibly not taking a high enough dose, as I still have issues with my hands and feet.

There are quite a few here who’ve been taking MTX for a while, with zero issues, so hopefully they’ll offer their thoughts, cheers Deb :)

Hi 14bubbles,

I’ve been taking methotrexate injections since 2013 and haven’t had any problems at all! It has helped me immensely! Best Wishes!

Hi. I’ve been on MTX since June ‘18, going from 15mg tablet form which has gradually been increased to 25mg with Metoject, the injecting is fine once I got used to administering it myself. I’ve had no problems with MTX, I can only say that is has helped my RA and the quality of life immensely, other than slight nausea the gain has been all positive!!! Good Luck 😉 xxxxx

I've been on MTX for 8+ years. I had a few minor side effects at the beginning, but since then it's been fine. More importantly it works! It has given me my life back, and I wouldn't be without it. So for me it's been a wonderful drug.

Hi 14bubbles, I have been on methotrexate for 5 years, I started on 10mg and built up to 25mg, initially I had a bit of nausea but this soon settled down by taking it at night. I think the anticipation of side effects is what worries many people. I have been fortunate in that I have never had any abnormal blood results and can honestly say that it has had a dramatic effect on my symptoms. I have inflammatory arthritis and last year my rheumatologist was happy to reduce it to 20mg. I have been on this dose since March and have had no problems. Good luck

helixhelix
helixhelix
in reply to cris1728

Yes, the same way there's the placebo effect, where things work because you believe they will even if just a sugar pill, research has also shown there's a "nocebo" effect. So if you worry a lot about side effects, then you are much more likely to experience them.

The advice my rheum gave me was to look after myself well (food, sleep, weight, exercise, no smoking) so that I was as healthy as I could be and with a good metabolism and then things would be fine. She was right!

Hi and welcome to this valuable forum. I have been on methotrexate (tablets) for nearly 3 years with mixed experiences. There is no doubt that it has been effective in reducing my symptoms but I do still suffer some side effects - nausea and tiredness -on a dose of more than 12,5 mg a week. I feel that to further slow the progress of my RA I should really be on a higher dose, especially since I have had to stop the other drug- hydroxychloroquine. My rheumatologist agrees. I am now wondering whether to move to methotrexate injections as they may cause fewer side effects and I will not need as high a dose.

People’s reactions to both the disease and the drugs seem to very enormously and it may well be that you are able to tolerate mtx really well and it will keep your disease successfully under control,

Good luck.

Hi, I have been on methotrexate for 3 years and mainly I am much better, I still have the odd flare and sometimes feel tired and a bit “off” the day after taking it. I hope it is successful for you, take care.

I’ve been on M/X gor 7 years for sero positive Rheumatoid Disease . Wasn’t able to tolerate tabs but fine by injection. No real side effects except loss of appetite for a day or two a week ( no bad thing!) . Was very reluctant to start it but it’s kept me living a normal( ish) life. I’m on quite a low dose - might be even better if I stepped up as advised but I hate taking anything !

Good luck.

Nine years plus on MTX. It has helped me to get to remission. The very few side effects do not bother me at all. It's the benefits the drug has that are important. I hope it will work as well for you as it does for a great many people out there. All the best.

Hiya 14bubbles, welcome. I'm seropositive & like you I started treatment on HCQ which worked for the first year but started failing so MTX was added. Once my Consultant was happy it was working the HCQ was stopped. I've been on it 9 years, initially 15mg tablets then varying doses on injections, currently 20mg. I am a little more tired the following day & have less appetite, neither so bothersome to consider stopping it. My Consultant advised I didn't take the tablet dose in one go but to divide them to have with meals so I took 2 tablets with breakfast, lunch & evening meal with good results.

There's no saying how you'll find it I'm afraid. In common with most of the meds for RD & associated conditions we have to try them & see how we respond. Your experience could be totally different to your Dad's, I really hope it is because it's a very good DMARD for many as you see from the replies you've received. It's also a positive if you do need to progress to biologics as many seem to work more effectively when MTX is used in conjunction.

As you'll have gathered MTX is it only available in tablets but also injections, often considered if side effects are troublesome & increasing folic acid hasn't helped.

Do bear in mind that forums are often frequented by those struggling so consider that when searching for specific replies.

I also tried SSZ which was stopped both because of side effects & it just didn't work. The same with leflunomide.

I hope you find it useful being here with us. It might be helpful to have a read at your leisure of the NRAS website too nras.org.uk

Hello,

Have been on Methotrexate for more than 30 years! It has proved to be extremely effective and I have had few issues with it. In the 1980’s it was only available in tablet form and these caused nausea but I persevered as the treatment was the most effective for me.

Commenced on injections when they became available. I still take it in combination with a number of other drugs including prednisolone and Rituximab infusions. Everyone has different responses to drug therapies but this drug is now well tried and tested and is still the drug of choice in moderate to severe RD.

Best wishes Pam

Welcome, I've been taking MTX since last March with mixed results. It has really helped me RD wise, and all the accompanying issues such as controlling the brain fog, improved my sleep and so on. But I can't tolerate the higher dosage I probably need to improve my quality of life due to gastric and bowel problems. Overall it has helped me, it is worth giving it a go.

Hi 14bubbles, I have been injecting 25mg of MTX by Metaject for a year now & except for being tired the day after, I have no issues with it at all whereas I felt nauseous with the tablets. I also take Hydroxychloraquine & will be adding Sulphasalazine soon. Hopefully soon they will get the mix right & the flares will stop..hope they find the right one for you quickly 😊

Hidden
Hidden

Hi, I've been on MTX on and off for 10 years, tablets first then injections now back on tablets. Had to stop it in 2012 while I had cancer treatment, including chemo. No problems for me.

Hi

I've been on it for nearly 5 years now after being undiagnosed for years as it didn't show in my bloods , RA only showed up in routine op on my knee when they did bloody. hence ending up at 52 with a new knee ! Had I have been on the correct meds I may have not needed the operation. my point being is if this stuff works which I'm on now please stick with it.

as long as you can tolerate it of course.

I just take extra folic acid to combat the side effects and drink plenty of water on the day you take it.

it's stopped working that well recently after 5 years though n adding Benaplai into it.

But will still take the metho a long side.

If you can get on the injections they are better as less trouble to the tummy .

I take it at night so don't notice anything next day just a little off n tired.

But hey life can make us feel like that anyway.

Good luck x x

whoops sorry bloody was meant to say biopsy

I have been on it for almost a year and it’s been increased several times. I seem to tolerate it ok. I take prednisone with it but only when I have a flare. It was developed as a cancer drug back in the 1950’s. My breast doctor said she prescribes it for breast cancer and my gastroenterologist said he Prescribes it for Chrones disease. So it’s not just used for RA. I was skeptical but now I would recommend to give it a try. I’d say it took me six months with increases in dosage til I felt it working. I take five 2.5MG tabs on Tuesday and five 2.5MG on Wednesday each week. And I’m good unless I flare. Flares seem to happen when I stress or do too much. Wishing you well.

Thank you all for your comments, its helpful to hear so many positive reactions to MTX, having so far mostly heard negatives!

Methotrexate has been a wonder drug for me Bubbles. At first i had nausea and solved that problem by drinking ginger ale or beer. Just sipping it. or ginger tea. But my knees stopped collapsing.... my hands freed up for driving ..( i could barely drive before MTX. I was very worried about the effect on my liver but the results are borderline and i am okay. Been on MTX for 10 yrs now. Tiredness could be a side effect but its hard to tell because RA causes tiredness. In the 10 yrs the liver has continued to tolerate the MTX and all the other meds i take for other conditions. I am now 68 and my health has improved a lot. The only sore point is that i now have to deal with ageing as well. lol!

Rosie

Hi, I had breast cancer 27 years ago and my chemotherapy drug was methotrexate. Less than a year later I was prescribed it for my RA and have been taking it ever since. Liver function tests remain ok (and I do have the occasional glass of wine .... well, regular more than occasional, but rarely more than one glass). Just shows we are all different. Good luck!

Hi bubbles! Glad you found this forum! The friends on this forum have been so helpful to me when I received my diagnosis of RA in October. I was very nervous to begin taking the MTX but as so many have shared, it has really helped me and the side effects are doable. ( slight nausea and fatigue) I’m taking the injections now. Your rheumatologist will keep a watchful eye on you and your blood work to monitor your body’s response. Baby yourself if you can the day after taking it. So sorry you have been dealing with Inflammatory arthritis for so long but maybe MTX will bring you some relief. {Hugs} 🌷

Becky

My first post too. Thank you for your posts about MTX, they've been very helpful, especially the positive ones. I'm 60 and was diagnosed with RA just before Christmas and started taking MTX. I'm very nervous about it having read so many different and some scary things but so far have been a bit nauseous and very tired for 3 or 4 days. Does that go as you get used to it? I'm hoping to go to Africa in a week or so and wonder if I should take antibiotics with me in case of infection. Is that a good idea or am I being over-cautious?

Hi everyone!

I was diagnosed with RA in May 2018 at at just 37 and immediately put given a steroid injection and put on 10mg Methotrexate. The injection was to help alleviate the flare up as it would take a few weeks for the Methotrexate to start having any effect. Initially, the fear of side effects worried me and I kept looking out for symptoms here and there but thankfully, it’s been a wonder drug. My pain has gone and the med seems to be doing a good job. Last time the nurse checked into me a couple of months ago, blood levels were normal too. I have noticed hair loss and it started off a little bit, but recently I find everytime I touch my hair, theres alot more than the time before. I’m taking hair and nail supplements which seem to be helping but I’m a tad worried about the future of my hair. I’m trying to feel optimistic and hoping this will stop at some point- I suppose health over hair anyday? I am getting slightly ignorant with my health as I’m still cooking, cleaning, shopping like a crazy woman and still going work- I am however, feeling the pressure I’m putting in my body so need to slow down. Will start exercising again even though alot of people have told me that I shouldn’t put pressure on my joints...🤔 So far, Methotrexate has been a life saver for me.

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