Anyone who is having great success once starting methotrexate I’d love to hear about it! No sugar coating just real results please☺️
Methotrexate : Anyone who is having great success once... - NRAS
Methotrexate
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esmarchant
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I took it for 7great years & honestly thought my RA was cured..,until gradually it stopped working. No dramas…the symptoms just came back. But I had those 7 good years on it. I stopped taking it & moved on, & now 27 years after being diagnosed…I am living a 95% painfree life.
But I admit I didn’t write in saying how successful it had been….To begin with, I did have the occasional headache the day after taking it, but that could have been because I wasn’t drinking enough water.
Sadly for poor old Mtx…those it doesn’t suit shout out to the world, hence giving it the unfortunate reputation, despite it being just about the most prescribed successful drug for RA.
But there is only one way to know if it will suit you…so if you are about to start taking it ….treat it the same as you would any other Dmard. Don’t dwell on the nasties you have heard……only look forward to it working FOR YOU,
Take the Folic acid as prescribed …if not prescribed for 6 days a week….ask your rheumy team if they can adjust it.
Onwards and upwards !!
Oh my goodness AgedCrone, what a wonderfully worded reply and I thank esmarchant for asking this question. It gives us newbies embarking on this medication ( yup that’s me ) a real sense of hope but with a balanced view. Don’t get me wrong, as my husband has always said be mindful of the fact that there are a lot of people out there who it works for and we just don’t get to hear about that often enough. I’d love a positivity page on NRAS as it helps balance the scorecard I guess. Made up you’re doing good.😊
What a wonderful idea! A “Positivity” Page!
I quite understand why those for whom a certain drug does not “cut the mustard” have a say…but for those for whom Methotrexate is working PLEASE SAY SO❤️& continue to give hope to all the newbies!
I take Methotrexatei the conventional way - six tablets once a week and Folic acid on every other day. I find it difficult to make such clear claims, as some do for the treatment, because I do not know whar would happen if I stopped.
On the positive side - after the very painful week of intial hospitalisation at Chriatmas 2020, and one early painful hiccup, when my doctor withdrew predisnolone too soon, I have bumbled on as a weakened old man with a steady, if diminished, capacity for life, part of which must be age-related. I presume that to have been facilitated by MTX, 'After, (and continuing) - therefore because of'.
Such medical commentary as I have received (very sparse) seems to believe that MTX is working quite well for me. I have to attend a session for elderly folk about medication in three weeks time, no clear indication why. Much of this stuff is very expensive.
I hve come to believe in MTX, However, I acknowledge that humans have weird beliefs about many things. I am reluctant to stop MTX as an experiment.
Will T.
You should never “experiment” with any prescription drugs Colaba. In Rheumatology,…consultants have many years of experience, and they don’t prescribe DMards indiscriminately. They know from your physical appearance on examination and your tests, which one is likely to suit you, and which one is certainly not likely to suit.
Many of us oldies who have lived with RA for many many years have come to realise that 99% of the time, listening to our rheumatologist is the way to go..
Many over 70 year olds have been offered this medication review…hopefully it might winkle out some little adaptations for some, & will prove worthwhile!
So if you feel something is lacking in your own treatment, do say so at your review…. If you don’t tell them, you have a problem, they can’t treat it can they?
Thanks for the warning, I cannot find my last message, but I didn't think I suggested experimenting. I have followed all the instructions slavishly and suppose the drugs are working. I am much weaker than before RA and know that is usual, I am also rather old, which presumably also brings weakness.
The only moan I have , as you know only too well, is that I have not actually spoken to any medical professional about RA for two years. My GP seems not much involved with that. I bumble on reasohably well, though I have developed a cough over some time and am trying to obtain a GP appointment to report that, as I understand that may be of some RA related interest. I guess he will be a bit annoyed at such a trivial use of his time.
Keep taking the tablets!
Hi
I have been on MTX (15 mgs weekly) for four years. Firstly on tablets which caused some stomach issues (nausea and cramping) I was then switched to weekly injections taking folic acid 6 days a week (not on the day of injection)
We are all different and have different reactions. The main thing is that for me it works. I was almost bed bound and my husband was having to dress me, I couldn’t even roll over in bed. The whole body pain day and night was unbearable. Oral steroids helped but I was keen to come off as soon as possible
The effects of MTX were felt within a few weeks by me, I was able to come off prednisone after 7 months (using a dead slow method) Today I’m pleased to say I’m fully mobile, very little pain that responds to paracetamol if it gets too uncomfortable. Side effects for me are fatigue and hair thinning although this is mild and manageable
Good luck with your journey - sending my very best wishes to you 😊
I've been taking it in various doses (and injection) for about 7 years. In the beginning I did have reoccurring mouth ulcers followed by cold sores but taking folic acid every day soon fixed that. I still get fatigued and my hair falls out but other than that, keeps my disease under control.
I do take mine at night though about an hour or so before bed. It sometimes affects my sleep but I think it's sometimes psychological rather than the methotrexate and I do take other meds so it could be them also.
fabulous question to ask . I too am embarking on this med so I wish you well on your journey . All the best
Thanks! Good luck to you too!
Another relatively happy customer 😊 It works well for me in conjunction with Sulphasalzine and Hydroxychloroquin. I do get the "hangover" effect about 24 hours afterwards so try to take it before a quiet day and usually inject in the evening so that I can veg on the sofa when the tiredness/fuzzy head hits. Staying well-hydrated definitely helps as does 6 days of Folic Acid. I was changed to injections simply to get a stronger dose (as none is lost in the digestive system) rather than because of problems with the tablets.
Like you I’m on MXT & sulphazilazine but came off hydroxaquine but had it stopped as it can cause pressure behind the eye & heart problems
Been on 15mg mtx injections since April\May this year. Nausea was not good to start but upping folic acid to 6 per week has sorted that. I also feel a bit bleurgh for about 24 hrs after the jab.I didnt seem to have much improvement and was ready to give in but found it was starting to take effect after about 3 months. Glad I did persevere. Have just started hydroxyroquine alongside the mtx after a course of steroids due to a flare.
I dont seem to have difficult side affects from either. Its hard being patient to allow the meds to get to their optimum but that seems true for most meds in my experience. Good luck
I started in 2017 variations on dose trying to find the fine line of effectiveness and side effects . Injections work best for me . MTX on its own wasn’t enough for me . I have tried multiple drugs along side of MTX but yet to find the right cocktail of drugs.
OK AC you've twisted my arm to shout out about Methotrexate! Been on it 6 years, 25mg injection. I was dreading taking it when I was diagnosed as I'd heard all the horror stories but I can honestly say that, after about 14 weeks, it worked for me and I'll take it for ever if I have my way! At first, I did feel a bit sick and headachy after taking it - but after a few months the side effects lessened. Now, the only thing I'm left with is the tiredness but TBH I think that's the RA as much as the Methotrexate. BTW, I take folic acid 6 days a week, vits C, B, and D and Omega 3. It worked for me and I'll be forever grateful given the state I was in at diagnosis! Hope that is helpful for anyone just starting out and fingers crossed it works for you too! X
I’ve been on mtx for over 25 years now, varying doses as it made me quite sick at first but it eventually settled down. It is very common to get side effects with meds but once your body gets used to them these can settle down, of course if it’s horrendous you can speak to your rheumy for their advice. I hope it works well for you 🤞🏻
If you do a search here for methotrexate there are some helpful tips in past posts to help with any mild side defects.
Unfortunately methotrexate wasn’t the drug for me but I know three people who are busy living life (and you probably wouldn’t even guess they had RA) just by taking this one drug. Remember that forums like this give a very skewed picture as most people post when they are seeking advice/support. The people whose medication is working for them are busy getting on with life.
I have taken it for over a year prior to it I had difficulty walking back and shoulder issues pain in hands feet and neck. I feel so much better and hope it carries on working. intially I was a little tired and headaches while the body was getting used to it. I get tired if I overdo stuff that's the RA. Had a few flares when I have been ill.
Sounds like you’ve been through all the body parts I’m dealing with currently. Thank for your post!
I've had RA for 53 years and taken MTX in oral and now injectable forms for over 40 years with few problems. Had to pause for pregnancies and neutropenia but can say it's been the best drug for me.
That's good to hear. I have been on it for 12 years. Started with tablets and moved on to self injecting and the injections for some reason were more effective and I have had low inflammatory markers since. My rheumatologist has left me on it as it suits me. I was wondering how many more years would do, but now I know I can keep having it. Thanks for sharing.
Terrific! Glad you’ve had such success with it!
hi, I have been on methotrexate for 6 years started on tablets and changed to 12.5 injections I take folic acid and omeprazole and have an occasional flare every couple of years and take prednisolone . I lead a very active life and find Pilates really helps me. 😊
Awesome! Thanks!
Another fan (so far !) Of MTX. I was diagnosed last November in a sobbing heap in the consultants office, could barely walk, couldn't drive, couldn't dress myself, had bought myself a wheelchair and all manner of wrist and knee supports and jar openers. Within 12 weeks and an up of my dose to 17.5mg I'm relatively pain free, the odd ouchy moment but no more than anyone my age I don't think. At the beginning I had a few months of nausea and stomach upsets the day or 2 after taking. I upped the folic acid to 6 days which made me constipated so now I take it roughly 3 days a week (when I remember!) I occasionally get the bone weary fatigue but that's usually when Ive overdone it at some point. So, so far, I'm really happy with my mtx journey 😀
Linseeds/Flax seeds and/or Chia seeds may help you with constipation. If you don't like the whole seeds choose a milled variety.
A GP recommended using them - sprinkle on cereal, yogurt etc. Most supermarkets sell them now, although some are too expensive. I buy from Grape Tree when I buy a batch of nuts and dried fruits - lots of online offers.
I,put two teaspoons of Chia seeds in a small yoghurt in the fridge overnight …..works a treat…when I remember to put it on my Granola for breakfast.
... so simple and yet no other GP has ever mentioned it. GP also told me long term laxative use is not a good idea, can upset gut etc.
Yes long term laxatives strip the gut of good as well as bad,& as soon as you stop taking them…you are back where you started.
In fact I saw a gastroenterologist…& HE asked ME how much Chia seed I take! He said exactly what you say…….as usual the medical profession don’t want to know unless thousands has been spent on research….even though these seeds have been taken in the East for years.
You can even buy them from Amazon!
.
That’s what I’m going through now. I’m headed for Mayo Clinic for the second time in two weeks. Flying from NY to FL is not fun in my condition. By this Friday I should be on a treatment plan🙏🏼
Fingers crossed it works for you, but if it doesn't there will be something else that does 🥰
I've recently started and was very worried, but it has helped enormously and wish I'd started it sooner. I'm still taking daily steroids but my crp and esr wasn't decreasing so rheumatology suggested starting merh. After 12 wks on 10mg increased to 15mg and now I can feel the difference; less pain and swelling. I've had slight side effects of nausea and upset stomach but increased taking folic acid 3 days a week has helped and there I always the option of moving to the injection. I've listened to the advice and understand everyone reacts differently so you have a bit of trial and error to find what works for you. There's a lot of horror stories but also many who take it without any problems.
Thank you for sharing your experience 😊
I've been on mtx for 14 yrs and the only problem arose when tablets started to contain lactose. Went onto the Ipen and have had no problems with mtx since. We are guilty for not posting and letting people know how good it is. Good luck and take folic acid as well on the days you don't take mtx.
Thanks and I will heed your advice!
I have been on Methotrexate for 1 and you have to be patient and with the help of your RA department 5 yrs now that is my constant medication l had tablets first they helped and about 10 yrs ago it was changed to self injections l also have Rituximab infusions now and my 20mgm of methotrexate weekly has been reduced to by 2 steps to 10mgm weekly injections always self administered . This works well for me but every one is different l hope you will soon settle on a good regime for your self .
Sounds like a lot but I’m glad it keeps your RA controlled!
I’m on methotrexate injections. I had to have a biologic added as on its own it wasn’t enough and the effect from both is fantastic for me. The first few weeks of taking methotrexate orally I had side effects the day after (nausea, headache) but I always take around teatime now, drink plenty of fluids, folic acid 3 times a week and as long as I do that I don’t have side effects. But everyone is different - I didn’t tolerate other DMARDS whereas other people do.
Glad it’s working for you along with biologics… thanks!!
Hi I was on Methotrexate for 15 years. It worked well for me. In the beginning I had dreadful nausea usually that day or the day after. After about 3-4 months my body gradually got used to it & it worked well.
Awesome!
Hi, I've only been on Mtx for 2 months, fairly newly diagnosed like yourself. I'm on 15mg tablets once a week with folic acid 3 days later. I'm also on Hydroxychloroquine (1 tablet twice a day, Mon to Fri).I'm pleasantly surprised by the lack of side effects I've been getting. The main ones have been poor sleep and fatigue - which go hand in hand! 😂
My rheumy nurse dismissed my poor sleep being down to my meds a couple of weeks ago, but I've just missed out my last dose of mtx last week because of a nasty cold.... Even with my bunged up nose and cough, my sleep was much improved - so I'm safely saying the mtx (for me) causes poor sleep.
I found all these lovely people on here so supportive when I was first diagnosed, pre-treatment plan, I was quite down about everything.
My rheumy nurse gave me 3 weeks of prednisone at the start which worked wonders, got everything under control, and I feel really good (tiredness aside).
Taking one day at a time, but I'm walking my dogs every day, not quite as long a walk as I'm used to, but I'm coping 😁
Take care of yourself and good luck with your meds! X
Thanks for sharing! Glad you’re able to walk your dogs and I bet they are happy too!
G’day,
Been on MTX for 11 years first tabs now 25 mg injections ( I was on 12.5 but gradually increased over past 3 years). Only negative was feeling tired six hours after injection but that’s gone now. Blood tests every three months. Folic acid 6 days a week. No great problems with reduced immunity. Never had covid. I won’t say miracle drug but I remember how bad it was until the MTX kicked in. Definitely worth the few negatives for me. Good luck with it.
Terrific! Glad you’re having much better days on it!
How long did it take to kick in for you?
From memory I was on steroids and other stuff to alleviate symptoms but rheumatologist said 12 weeks. Can’t remember sequence but it’s worked ever since. No steroids now.
I was started on oral MTX in Oct 2019. Dose ramped up to 20mg once a week and maintained at that level since. It has, so far, stopped my RA in its tracks, and I'm in remission ( most recent review was less than a month ago). Fingers crossed that this continues!
Initially I had MTX 'hangover' days, where I felt nauseous and had brain fog for a day or two after taking the pills, but this passed, gradually subsiding over a few months.
I am also prescribed 5mg folic acid on the 6 days of the week I don't take methotrexate.
I am on 3 monthly blood tests, booked at my GP surgery, to ensure everything is on track, without which the MTX prescription wouldn't get renewed.
I hope this continues!
Yes, me too! Thanks for your post!
I started on the lowest dose available for injections and by three months it had started working. I felt I could walk again, I was no longer walking through treacle! But then at the 6 month mark I started getting severe abdominal cramps four days after injection, and it was getting progressively worse. When I stopped the MTX for the covid jab all abdominal cramps disappeared so I refused to go back on it again. I would have loved to have stayed on it because it didn't only make my PsA feel better, it kick started my thyroid working better too! Sadly being kept away all night due to abdominal cramps wasn't worth the continuation for me.
I have been on mtx since 2017, first the tablets and then the injections. Also take sulphasalazine and of course folic acid. My nurse says it has me in remission, and it has helped me to get my life back so I cannot complain . I do still have 24hours of brain fog and nausea after the jab , but I find I can carry on with most things as long as I have regular sit downs, snacks and a tin of sweets to suck lol. I see it as a small price to pay for being pain free and mobile. Good luck and best wishes on your journey 😊
It keeps the RA away, a very good thing, but I have a lot of nausea and stomach churning, which has always come and gone. Been on it over five years, injections of 20 mg and six folic acid days a week. I’m thinking of asking for some more help with the nausea. I’ve heard there’s some anti sickness meds they can prescribe.
Good luck with it.
Hi, Both hubby and I take Methotrexate. I have RA and he has been diagnosed with Psoriatic arthritis. I also take Hydroxychloroquine and folic acid on the 6 days when not taking the Methotrexate. The Hydroxychloroquine wasn't sufficient to take down the swelling in my fingers and inflammation levels however adding in the Methotrexate was successful and has been now for 2.5 years. No discernable side effects to date and it continues to work well at the moment. The only downside is blood checks every 3 months. Last winter (and this seems a regular thing for me) my immunity took a dip, I suspect having Covid didn't help! My white cells took a real dip and I needed blood tests every 2 weeks. However by the skin of my teeth, I managed to remain on it and once the count improved, blood tests eventually became quarterly again. Husband's arthritis unfortunately does seem more severe than mine but he is doing well on Methotrexate and tolerates it too. He too doesn't have any sickness either. I know another person on it who does however and they inject Methotrexate and this method works for them.
You don't say what you need the Methotrexate to treat. If it is RA and you have swelling in your fingers and hands and don't feel the prescription meds get you to where you want to be, I'll let you know what worked for me. In RA the synovial membrane fluid levels diminish. I read around this subject and came across Hyaluronic supplementation as this replenishes the levels of synovial lubrication. It takes about 12 weeks to become effective, 11 for me and I then noticed a real improvement.
Good luck with the journey, be patient and may you find what works for you ! x
Thank you!
What is the hyaluronic supplement that you take? Is it in capsule form?
Hi yes it is and I buy mine from Weightworld which is a good strength and quality.
I've been on MTX for 14 years. Tablets first and then injections. 6 days of folic acid. It worked very well for me without major side effects. Many people already mentioned it, for the vast majority of people it work well but we don't hear about that 😕. Hip hip hurrah for MTX😄. All the best and hopefully all the positive messages give you hope as well.
Love it! Hope it works for me! Thx
I am another of the lucky ones. I had a very mild headache for 24 hours after my first two doses. No known side effects since (I've been on 8 tablets ,20mg total, per week for 4 years. I don't get more colds than before, but when I do get one it seems to last a little longer. I had some positive results within a couple of months, but wasn't completely convinced the mtx was that great. But after about 11 months it suddenly really, really kicked in. Not only did my joints improve, but I suddenly had loads more energy - so much so that my husband commented on how fast I walked up our hill. I still have the odd day when either my joints or my tendons are a bit painful, and I am still a little bit stiff first thing in the morning. But generally I am really very well at the moment. The only thing is that I have to be careful not to overdo things - my joints are already a bit damaged. I have psoriatic arthritis, which tends to behave slightly differently to RA, but is very similar in many respects. Good luck!
Thank you for posting!
I have been on Methotrexate (20mg weekly, Folic Acid twice weekly) for at least 15 years, & can honestly say that I have never had a problem. I have regular blood monitoring every 3 months, and I remain symptom free on the whole. Occasionally, there have been minor flares, but nothing like I had before I started it. Think positively, and I hope it works as well for you as it has done for me.
Thanks I hope so too!
No stinking thinkin! Thx!
Methotrexate has been good for my wife that has T-cell LGL Leukemia. My wife was diagnosed with T-cell LGLL in December of 2021. Udenyca injections bring up my wife's WBC and ANC values (white blood cell count and neutrophils abs count) into the normal range values. The MTX helps her platelets count increase into the normal range. It also seems that the MTX helps her RBC value. So, for her it is MTX (15mg) every Friday, folic acid (1mg) every day except the MTX dosage day, and Udenyca injection once every two months if needed. This is per her Hem & On doctor in concert with Dr. Loughran of UVA. She is doing pretty well for now and has blood work checks once per month. Hope this is helpful to you all and would like to ask you to share your treatment(s) that seem to be successful for this issue. Hope this is helpful information from "across the pond" ☺️
Thank you for posting. She’s going through a lot. I’m glad she has you to help her through it. I’m sure it scary and hard. Many blessings to you both. 🙏🏼
I haven't had a any real problems with methotrexate I take 12.5 mgs once a week. I split them into two doses and take two in the morning and three twelve hours later.
Interesting to know you can split it up like that. Thanks!
I started MTX about 10 years ago. It took a little while to kick in but when it did it worked very well for four years or so. Then I began to have symptoms which were manageable. I was very reluctant to move on to biologics but since doing so last February I have been completely pain free ( as I was initially with MTX). I was /am fortunate in that I never had any side effects from MTX - I know that’s not true for everyone. As has been said only one way to find out if MTX is for you! Good luck
Thx! So glad you had such good success with your meds
What do you mean by "biologics" when you moved on from MTX?
It’s been great for me.
At the moment I’m off it for a month as my liver tests have gone high, but I’m still taking Sulfasalazine. Once my ALT returns to normal my Consultant will start me back on it, see how it goes. This has happened a few times over the years, but overall Mthx, plus Sulfasalazine has been amazing for me. I’ve had no real side effects either, such as nausea, get a bit of brain fog the day after, but largely it’s been okay. 👍
I have been on MTX (10mg) successfully for 14 years (with hydroxychloroquine & folic acid) but have had to pause MTX for the past year when my ALT and AST went through the roof. Advice, please.
Hi - I’ve no real advice to be honest, I was the same, liver tests have been fine for about 3 years, although when I started taking Mthx they were very high. My GP lowered my dose of PPI (Omeprazol) which ‘can’ sometimes increase the toxicity of Mthx. Anyway that worked for me and my ALT, has been very low for years until now. I eat well and have been teetotal for 18 years, so it isn’t even alcohol that’s affecting it.
The only thing that’s changed for me is I had an iron infusion in April as I was anaemic, I have read since that this can affect the liver tests as my latest since ferritin blood test was 670 which is very high.
Or maybe it is just one of those things. My GP sent me for an abdominal ultrasound, but everything was normal.
My rheumatologist doesn’t seem that worried, I am going to start Mthx again tomorrow at a lower dose of 12.5 to begin with, then have a blood test in a few weeks.
I hope your liver tests go back to normal soon, fingers crossed 😊👍
l have been taking mx for more than 20 years . I have flare ups , take steroids injections but l manage farely well. Toes distorted take podiatry treatment, change shoes but life goes on. Hydrochloride is withdrawn
Thank you for posting.
Hello there, I was just wondering whether you had started your methotrexate and how you’ve been with it? I started my injection on Thursday, felt ok that day, Friday had a niggly headache all day and by mid pm felt a bit blah but overall ok. Feel brighter this morning .
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