I thought I'd update you with my diagnosis. So, following my upper and lower body ultrasound scans, it was decided that I have active inflammatory arthritis.
The scans found a lot of inflammation pretty much EVERYWHERE! And synovial activity too, along with many bursitis... crazy.
Anyway, I'm starting on Methotrexate today. I was thinking to start tonight before bed. What do you guys suggest? When is it best for you to take it? I heard it's better before bed for the side-effects and cos it can make you quite drowsy and fatigued. Hence I rather take it towards the weekend than when I'm at work in the week. I'm already fatigued and exhausted as it is... Not looking forward to it!
The Rheumatologist seems to think that it can work quickly for some of her patients. But then some say it takes up to a month to start working.
When did Methotrexate start working for you and made you feel 'better' and lessened your pain?
xxx
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regina79
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Actually, worst case scenario - it can take up to 12 weeks to have any effect. I think you will probably have to work out your own best time, as you will probably have so many different suggestions. I don't have any side effects, so I always take mine on a Friday morning with my breakfast and a dozen other tablets. I take my folic acid every day except
Friday. Different rheumy's have different ideas, so you may have been told different. I'm permanently drowsy and fatigued as I'm on so many drugs (including Fentanyl patches) for my many and varied conditions. I won't bore you with a list, but MTX is one of two DMARDS I take. I also take Leflunomide for RA, while MTX is for Vasculitis.
Oh wow, that is a long time but I suppose it depends on people's bodies and issues. Fair enough. Oh bless you it's so good that you have no side-effects! I wish I was like you - I get severe side-effects with everything... so I'm actually terrified. Also I have a very sensitive stomach so I'm scared after reading about the nausea.
But I'll pray that I won't get severe side-effects. I need to be able to take it! I've never felt so fatigue and unwell in my entire life. It's the worst feeling.
Rheumatologist doesn't want to give me steroids for now as she wants to see if the Methotrexate works, and if I take both she can't assess this.. So she said to wait until the drug starts working and then I can start on steroids.. but I'm in so much pain I can't go on x
Good news on diagnosis and starting a treatment plan!
MTX usually takes three months for benefits to be noticed, and could be longer.
I used to always take it with a stodgy breakfast and that helped quell nausea and diahorrea.
Stopped MTX May 2018 but was prescribed a very low dose to go with Amgevita, in the last month. It still has the same nasty effects on me as before, although this time I took it at night once a week for four weeks.
So it is probably just trial and error to find out what actually suits your body best.
Thanks so much Charisma! I hope so too... to get some relief. I'm in so much pain.
She said that if the MTX doesn't start working within two-three weeks I can start on steroids or do plasma or steroid injections on hip and shoulders as they are killing me.
So, does MTX need to be taken with food?
Wish me luck...! I'll let you know how it goes. xxx
That is quite a low dose. I used to have 20mg Metoject then reduced slowly before finally going onto another DMARD.
The dose of folic acid depends on the dose of MTX. A higher dose of the latter usually means folic acid every day except the day you take MTX. With just 2x2.5mg, I took folic acid only the day after MTX.
I only agreed to take the low dose MTX as I thought it was needed to ‘anchor’ Amgevita. Even 1x2.5mg is proving too much!
I hope you get suitable pain relief eg Tramadol. Before diagnosis, I was given that and steroids.
Steroids do mask disease activity but you should not be left to suffer.
Yeah, she told me to take Folic Acid the following day, the day after taking MXT. Oh I would have thought it was a moderate dose! Oh well, perhaps is best for me to start with a lower one.
What's Metoject?
I know right?! I just don't want to suffer any longer.... x
Sorry, metoject is injection pen for methotrexate. MTX is prescribed for quite a number of health conditions so the consultant will prescribe what is most suitable for each patient.
I also had hydroxychloroquine with MTX.
Just as MTX was (and still is, in very much higher doses) a cancer drug, hydroxychloroquine was a malaria drug. Both these drugs were observed to benefit those with RA symptoms so began to be prescribed as DMARDs.
I hate the pain too, feel the dread of it coming back with every day towards the end of the oral steroids taper. But we do need to know if drugs are working to reduce RD etc, and symptoms are not merely masked.
Yes, 7.5mg is the lowest dose you can be given. I'm currently on that dose for Vasculitis but when I took it for RA I was on 25mg. My Folic Acid has always been the same. The next time I see my rheumy I'm going to ask if I can have an increase as I don't feel it is controlling my Vasculitis, but it DID control my RA as does the Leflunomide (20mg daily). I also have Truxima occasionally for my Vasculitis, but she never suggests to have an infusion of that. Problem being that if my bloods are OK then she thinks I'm OK too. But my rash is creeping back and my fatigue is horrendous and as for the Sjogren's it's driving me crazy.
Hi, I was on it for 20 weeks and it was a very very slow process of it having an effect. Sadly it was stopped due to side effects but don't go into that too much now, just take it and see as you may not get any. I used to take mine after evening meal on Monday's, folic acid on Friday's (until FA was increased to 5 days a week) rheumy nurse told me "MTX Monday, FA Friday". Drink lots and lots of water! and if any nausea try ginger tea. I've just started on Hydroxychloroquine, so far good 😊
It was first used as an anti malarial drug but was also found to reduce inflammation in people with autoimmune diseases, it dampens down the immune system. It's used for Lupus as well as RA. I hope it's going to work well for me 😊
I remember when I was first diagnosed with RA. Felt a tad weepy however that was quickly dispelled by the optimistic words from my consultant and the absolute relief that someone actually knew what I had after so many different thoughts from others in the medical profession. ( tendernitis, frozen shoulder, aches & pains cos I was getting on a bit )
Now there was a plan & I did achieve remission of 5 to 6 years however it has returned. Sulphasalazine that I was prescribed last time hasn’t worked at all so I have just started on methotrexate. Only taken twice ( two weeks ) & was dreading the nausea & sickness but, so far so good. 🤞🤞
Hope it works for you & without any nasty side effects.
Initially I had a steroid injections to take away the pain. Started on Sulphasalazine. One a day for a week, then two etc till I was on four a day. I think I was on that doze for four years & then gradually started reducing them till I was not taking any & was discharged however they haven’t worked this time hence now trying Methotrexate which I take after evening meal on a Wednesday. Folic acid on a Sunday. Too soon to tell if they’re going to work but as yet no side effects. I,m on 15mg.
Regina, does your Methotrexate prescription not say to be taken all together? It comes in smaller dose individual tablets in order to aid adjustments to the doses when recommended by your doctor but you should be taking the full prescribed dose all at once.
Don’t worry that you split the dose. I’ve been working up to 6 Methotrexate and was told as soon as I got to 5 to split the dose. Now I’m up to 6 I take 3 after breakfast and 3 after my evening meal. My Rheumatologist told me to do that , she also upped my folic acid to every day other than Methotrexate day. I’ve had no side effects either.
Originally diagnosed in 2004. Under consultant for ten years, on Sulphasalazine, but to be fair, I started tapering off tablets & then on no medication at all so really was ok for a great deal of that time. Then after another four years it came back. This time for some reason, Sulphasalazine hasn’t had any effect hence trying a different drug.
Regina, have you ever visited the NRAS website? nras.co.uk They have loads of information, booklets and leaflets that will be very helpful. Especially this one nras.org.uk/publications/me...
You can either download it, or send away for a copy.
Good news at least now you know for certain it is RA . It really doesn’t matter when you take it if get nauseous or tired it will happen anyway. I take mine on a Wednesday . I’m not a big drinker but if I have to go out of a weekend I would like a drop or two😁. I don’t drink the day I take it or the day before and after to stop the old liver from working so hard.
Yes you can drink but you need to be careful as methotrexate isn’t great for the liver. I wouldn’t drink when you first start, give your liver a chance to get use to it. Your regular blood tests will show how your liver and kidneys a coping . You need to look after it lots of water especially on the those Three days. I also do a liver cleansing diet the day before and after my methotrexate dose. (Also if I have a drink or two😁🍷) it’s common sense really.
I didn't drink alcohol for the first 8 weeks to see how my liver was, then gradually introduced the odd glass of wine. My ALT (liver enzyme) blipped up once... on my birthday week 🙄 but was back to normal after. It's a good idea to record all your blood results (I have online access for mine from my GP) and the hospital gave me a yellow record card for it, it actually wasn't really needed but I think it's good to keep your own records but that's just me 😂
Yes, it's a blood monitoring 'shared care' card. Not sure if every area uses them and although I like to fill mine in the hospital get my blood results through the system anyway. Just depends where about's you are I think.
Oh I see! I wonder what's the best NHS Rheumatology center in London. I need to do some research as I want to ask my GP to refer me to an NHS one as I might not be able to go private eventually, cos of private med might stop that. x
It usually takes up to 12 weeks to start working properly,I’ve been on it 3years now 20mgs and have few problems with it but everyone’s different so I would persevere a while longer xxx
It was nine weeks before I felt it was starting to work, and a while longer before things really settled down. Generally you take the tablets all at once although some people do split them over a few hours.
I take my MTX before I go to bed, and plan to have an extra hour in bed the next morning. But apart from that I have no side effects. And it worked very well for me.
Oh that's a long time but I guess it's worth the wait if it does work
Thanks, I'll take another one now and then the other one before bed. And if I'm ok this way and it's allowed by my specialist then I'll do the same next week. If not, I'll take them all at once next week xx
Hi I inject 15mg MXT every Monday evening just before my meal. I take folic acid 5mg every day other than Monday. As HH says it can take time to work - for me it took around 14 weeks (I had steroid injections every 4 weeks to get me through) to work. As to side effects most are temporary and go after a couple of weeks - if you don't cope with the tablets you can always ask for the injections which bypass the digestive system - but some people don't get any side effects at all. As others have said, I don't drink alcohol the day I take it or for a couple of days after. Some weeks I feel better than others but I think it's very much an individual experience. I've stuck with it for over 5 months now and it's really helped me though I'm not quite there yet so about to increase to 17.5mh. Good luck, hopefully it will work quickly for you with no side effects.
You are probably on a starting dose and it will be increased over the next few weeks. I started on three tablets then it increased to 4, 5, 6 over a few weeks.
I am glad you finally got your diagnosis and starting your treatment. At least now you are on a path to getting and feeling better. For me, my Rheumatologist started me on 15 mg of Steroids first few weeks then put me on Mtx-15 mg-Once a week injection which I take on Fridays. I started feeling better immediately when I started taking steroids but my inflammation markers really started going down about a month after starting Mtx, at around week 9 of Mtx, my markers were within normal range, so she asked me to taper off steroids, which I did come off of by end of the 3rd month. Now 6 months since I started Mtx and I feel almost normal, haven't needed Painkiller for last few months. I am grateful that I did not experience any side effects. I started feeling the difference in about 4 weeks. Hope it works for you as well. Good luck !
I was given a steroid injection to help when I was started on MTX, as I was told it would take 12 weeks for MTX to work.
I started on 1 folic acid a week but had a lot of mouth ulcers so this was put up to 6 a week. I started on 15mg of MTX but this was upped to 20mg after 6 months.
I take mine on a Monday normally with a banana and have no stomach side effects or tiredness.
It has made a big difference but as I still get some flares they are suggesting changing to injections to see if that helps as more drug is absorbed.
Don't be scared to ask for a steroid injection as I find they are magic with pain relief starts within hours!
Hi Regina.....Methotrexate is a very well tried & tested drug that works really well for thousands of people all over the world.
Unfortunately those who do really well on it are getting on with their lives & don’t stop to tell those who are scared & apprehensive ......how really effective it can be!
I too was diagnosed with inflammatory RA & after a few false starts with other Dmards I was prescribed Mtx.....eventually taking up to 25mg per week.....it worked really well for 7 wonderful pain free years. For me the only negative was a muzzy head...which I (almost willingly) put up with as it took away the terrible pain.
Please try to put out of your mind all the “might happens” & develop a mind set that it will work for me! Thinking it is going to have all sorts of negative effects could well be self fulfilling? My rheumatologist recommended that the pills are taken in one dose....but some people do split them....but if you can swallow them all at once...do.
You obviously have a very caring rheumatologist who is not just throwing steroids at you......but has decided Mtx over the many other Dmards ....is likely to work for you.
You can read here how difficult it is to stop taking Prednisolone......which in fact is only a short term solution. I had a few long term steroid injections which for me lasted up to 10/12 weeks & were a great relief.....ask your rheumy about Depomedrone injections.
For what it’s worth I took Mtx with lots of water on a Friday night...took 5mg FA Sat to Thursday & I had no nasty effects...except as I said a muzzy head. Do keep well hydrated,don't smoke & if the odd glass of wine upsets you.....just don’t drink.....a small price to pay to have less pain!
So please listen to your rheumy, stop worrying about negatives & tell yourself Mtx will work well for you ......it took a good 3/6 months to work 100% for me....but I didn’t read this site then.....so I didn’t read & worry about what had happened to others....I just I listened to my rheumy & continued with painkillers & the occasional steroid injection until the Mtx kicked in fully.
I really hope you are one of the thousands of lucky people for whom Mtx works....but if you are not, move on, there are many other Dmards & possibly Biologic drugs that are available now.....I do know how constant pain drags you down.....but as many will tell you.......these day there is light at the end of the tunnel.
Hi Regina. I was diagnosed 18 months ago and it’s been a slow process to get where I am today which is almost pain free. Started off on low (7.5) dose methotrexate tablets which had little effect. Chose to take it on a week night so that my weekends were not spoiled in case of side effects - but luckily no side effects other than increased hair loss (which stopped dropping out when I started to take a supplement called Biotin - fantastic).
Had my methotrexate increased over months but not enough improvement- knees and shoulders were the worst. So bad I struggled to walk and needed help to get dressed. 6 months ago started injecting 20mg methotrexate and added twice daily tablets of hydroxychloroquin which proved to be a good combination for me. I take 3 folic acid tablets a week. Additionally I had fluid removed from my knees in October and steroid injected into them - now have no knee pain at all. Went through the same procedure of steroid injections for my shoulders this week and through gentle exercise will start to build the strength back up.
When first diagnosed I was off work for 6 months and never felt so low or poorly. I work full time in an office and have struggled at times especially with fatigue but am able to work from home 1-2 days a week which really helps. Getting ready for work in a morning can be so exhausting, and that’s before I’ve done any work!
Now feeling really good and busy planning lots of holidays with my husband. Long may it last.
I also take turmeric and black pepper (curcumin) capsules to help reduce inflammation, omega 3 fish oil and vitamin D, drink ginger tea and think they all help - certain the turmeric does.
Don’t get despondent if it takes a while to feel better- baby steps. Do keep pushing you consultant or rheumatoid clinic nurses to add or change drugs if you don’t feel any noticeable improvement. Good luck.
I have it everywhere too. Methotrexate didn't work for me. So was then put on sulphursalazine and hydroxychloroquine which also didn't work. All the time I got worse and worse. Eventually put on biologics which did help. These have a very good success rate, and have helped me, though I'm still limited in what I can do physically. Biologics don't do much about the fatigue.
Having RA everywhere means you've got it bad. Many people just have it in one or a small number of joints. Prepare for potentially some bad times ahead, but with biologics there is light at the end of the tunnel.
only worked for so long had to learn how to inject myself upper legs I CAN DO IT ! online research says gets into body 70 % better than pill - took me out of flares
Hi taken Mtx for years. Caught early. I tend to split them up during the day, very naughty as I chew them😝.cant swallow pills.on very low dose. Taken cod liver oil liquid as soon as I was diagnosed and still do and other supplements.
I started on MTX November 2018 at 10mgs per week. Now I am up to 25mgs per week. I asked the pharmacy how to take it to avoid gastric issues, so, I take it as suggested every Sunday with a FULL meal (meat, potatoes, salad - like a dinner). They also suggested a Gravol tablet one half hour before the meal too. I have dropped the Gravol with no difference to effects. I have never had any gastric issues at all so still take after full meal and I drink LOTS of water.
It took about 5 or 6 months for the MTX to take effect. I think it is because I have a strong immune system that is hard to shut down. I also take sulfasalazine and prednisone which I am reducing with a slow taper - the pred. that is. I have had very few side effects with the MTX and the ones I did have disappeared after a few months. I hope this is helpful.
mine took about 5 1/2 months to work buy it is coming along. I take mine Thurs night before bed both for the fatique and slight nausea it causes. Hoping for the best for you.
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crazy.
New RA diagnosis, feeling anxious!
Well finally got my diagnosis on fri 
New & waiting for consultant diagnosis. 
