I have been given the go ahead to commence methotrexate 6 tabs once per week, folic acid next day.
Not sure if it’s because I’ve had too much time to think, (there was a delay in commencing them) but I’m feeling anxious around it all. I’ve had blood test and chest X-ray prior to commencement, results back and ok to start.
two weekly blood tests booked to check all going ok.
I’ve never been like this before around meds but it feels like a big deal. I guess I worry about side effects as I live alone, I’m surprised at how anxious I feel.
I discussed some concerns with rheumy nurse on phone yesterday, felt ok when got on the phone ..but the anxiety has started again …
Anyone else felt worried about starting meds
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Adorable1
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hi , i was really worried too. I was steroid resistant- so i was also worried they wouldnt work, worried about side effects etc. im now 12 weeks in - Rheumatologist has just increased me to 10 tabs ( from 6). They are starting to work. Each day - a tiny improvement. There are few side effects - bit dizzy first few weeks - that went - now ok. My food seems more important ie im more sensitive to taste i think. Basically - dont worry, it takes time. Im reducing reliance on pain killers. For me sleep is a problem and fatigue , but not sure Thats methotrexate or just long term condition stuff. Keep in touch with your nurse teams - and i also started having a therapist which helped. All the best, jess
Yes they said I can do , but pharmacist mentioned if I wanted I could spread out the dose on the day I take them ,just wondered what others did.. jess thanks for your replies ….going to start them today. X
I think it’s only natural to feel concerned about starting a new medication - they usually all can have horrendous side affects. I know we’re all individuals in the way our bodies react to things, but I’ve been on mtx for over 10 years. I started on 20mg a week plus 1 folic acid. This caused me liver issues, and my hair started thinning, so my dose was reduced to 15mg and 6 folic acid tablets and I haven’t had any side affects since then. My hair is now better than it was before RA got me.
Try looking at it another way, if it works and it probably will then RA is just a few pills and forget it. If you overthink this then you may well get issues but stress or side effects caused by MTX is a different matter. Remember side effects are subjective and often go away as the body gets used to the drug.I’d suggest you try taking at night as I do with a new medication as if I don’t wake up sick etc then it is encouraging to continue to take. MTX doesn’t work quickly so you need patience but please don’t look for issues as the blood tests will show up things plus MTX is one drug everyone has to take before any other medication is considered and although cheap it is gold standard as it works for so many people.
Hello adorable1. Welcome to this super family where you can ask away and there’s always a reply from someone. Firstly, you’re not alone. I started methotrexate on 17 Oct and before I started my anxiety was through the roof. I had read stories where people were in a heck of a state and thought is this how my life is going to be. Methotrexate works well for so many people , I was tolerating it well on 15 mg, then it was upped to 20mg and all good. Alas my increase to 25mg has knocked me around so I’ve called my rheumy team. It’s all the unknown for you at the moment . My advice would be try not to overthink it on the day when you take your tablets . Keep busy pottering or meeting friends etc as it all helps you to forget. Big tip I got from the lovely people here was to drink plenty of water. So it’s 2 litres every day and it really does help. There are also the injection versions of methotrexate which I am on which bypass your stomach . Hang in there, use NRAS helpline and ask for a “volunteer mentor” if you feel it would be good to talk to someone on a one to one basis to share any concerns. I can recommend it. All the best.
Methotrexate is a big deal….because it really helps the majority of people who are prescribed it. So put all those doubts out of your mind and get on with looking forward to feeling a lot better.
Do make sure you stay well hydrated …..a lot of people find taking the tablets after dinner helps…so if you should experience some little side-effects, you will sleep through them.
Just don’t panic if you don’t feel better immediately…like all good things it will be well worth waiting for.
Hi, I originally started Methotrexate (6 tablets once a week after breakfast) 25 years ago followed by 1 Folic Acid next day. Unfortunately after 13 years there wasn't enough getting into my system so was put on 1 x 40 mg Methotrexate injection (Metro Pen) once a week which worked fine. Have never had any side effects of Methotrexate in 25 years so try not to worry. X
Hi Adorable 1 i have been on MTX for 20 years now although taking them orally was causing stomach upsets. I then asked the RA team if there was an alternative as i was on 25mg weekly and still the RA was very active and it wasn't worth the side effects if it wasn't working. Their answer was for me to inject the MTX which bypasses the digestive system. not only that they could lower the dose as when you take orally it only gives you about 75% of the dose but with injecting you get 100% of the dose as for folic acid i was told to take them all on 1 day 3 days after MTX the Folic acid does help with your hair loss and other side effects like mouth ulcers and slow healing etc. It may be worth considering if you find the oral form unsuitable. remember the side effect differ from one individual to the next some people get very little symptoms. and if the MTX alleviates your symptoms then embrace it. there are many remedies out there and i am sure they will find one for you Good luck
It's OK to feel worried. I'm sure that a lot of us do. I am aware that I do as I'm lactose intolerant. I had never realised how many tablets contain lactose. Try to take it easy, and I find it helps to drink a lot of water. I used to go walking a lot and notice the surroundings as I walked. Good luck with your journey.
Initially I found I had a lot of side effects, but folic acid more frequently helped. I am now injecting with a pen - higher dose, which is a lot better side effect wise. The side effects have waned dramatically now I have been on it 4 months. 👍Rheumy consultant says I am now in remission. Very pleased. Unfortunately for me a lot of damage was done to my knees initially before it was started and had time to work. If it works for you, it is actually one of the safest, most tested drugs in the RA war ammunition chest. Good luck.
Hey we have all been where you are now, the gnawing, feeling sick, recognition that this is your life. BUT.... if the meds work for you, your life will turn around. How you feel now isn't how you will feel. We have bad days but that isn't every day. FEAR is a natural response. Look at it with open eyes.
I was the same very anxious at first , I told them I wanted the injection pen rather than the tablets as I already had stomach issues , been on it 2 years now , all ok , touch wood , pens are very easy to use . Good luck 👍
Hi, I have been on Methotrexate for 11 years the only side effect was nausea, it was very bad at the start but does ease off I was told to take Folic acid 6 days a week to help, my doeas is going to increase sood but my lovley consultant has prescribed injections if the nausea returns .
Try to relax, I know thats easy for me to say but i am sure other people giving there experience will help you x
I did. I used to not even take paracetamol so all the meds were a big deal for me. Before I took my first methotrexate dose I even rang my daughter to ask if she could ring me in an hour to check that I hadn’t had a fatal reaction 😂
A year later I am not anxious but still remember the feeling.
Hi, I take methotrexate and so does my husband. It takes time to work so give it plenty of weeks to really kick in. Prior to taking it I was only on Hydroxchloroquine and it was insufficient. My finger joints were swollen and tbh it got me down looking at my fingers and wondering what a state they would get into. Try not to over-read stuff on the internet, there are some real horror stories out there and it doesn't help in the long run. I feel so sorry for the people who struggle to find the right meds (and recognise sometimes people take meds for years and they become ineffective) and I feel for their journey. However lots of people do well on methotrexate, so far both my husband and I have found this to be the case. Side effects for some people are often temporary so stick in there! Work with your rhemy team. I tend to take the meds and try and forget about them and the condition. I don't drink alot of alcohol but never on methotrexate day as I found even one glass of wine can make me feel awful if I've taken it. Guess the body is dealing with the methotrexate and doesn't need anything further to deal with ! This is just my journey, yours maybe different, but I found the hyroxy and methotrexate got me a long way but found further improvement with hyaluronic supplement which positively affected the level of lubrication in my finger joints (the synovial membrane). They took 11 weeks to work too. You'll find what works for you and my advice is don't stop trying and try not to overthink. The latter really is the enemy. Sending you a big hug and hope the worry clouds disperse and the sun comes out again real soon. x
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I guess I worry about side effects as I live alone, I’m surprised at how anxious I feel.
really appreciate the replies, it sure helps ! X
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