Newbie! Scared of MTX!

Hi! I've recently been diagnosed with RA & have had severe symptoms for just over 6months. Im 31 & also have a sister with aggressive RA. Hereditary I guess. I'm about to take my first dose of MTX (pill 10mg) & I'm terrified. My sister begged me not to take it as it caused her liver problems. I've heard so many bad things about MTX but feel I need to give it a try. What doesn't work for my sister doesn't necessarily mean it won't work for me right? When is best to take MTX? And! How soon after taking do the side effects start?

TIA xxx

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  • Hi, stop panicking, I'm on 7-5 max and I know they won't bite you as THIER teeth are only tiny little things lol, so nothing to be scared of, I know there will be a lovely peep who will be able to advise you, more than I can lol.

    Best of luck .

    Philip

  • That's mtx lol not max, predictive typing lol

  • Thank you philip

  • Don't panic! I think a lot of people panic about potential symptoms and side effects due to consulting Dr Google and reading all the lists, but just because there are potential symptoms doesn't mean you're eventually going to end up with all of them. You can certainly mention there's some historical issues with MTX to your doctor, but you're right - just because she ended up with issues doesn't necessarily mean you will end up with those problems. MTX is just one medication, it's the first on the medication tree - so they will try you on that, and if it doesn't work, they will move to something else. I ended up having issues on MTX but that was ok...I then moved on to Sulfasalazine which worked really well for me for a while, and I moved up the tree so I'm now on biologics, and will need it reviewed again.

    You can only make the choice you can make for yourself, but weigh up the side-effects to what it's like having your illness uncontrolled; for me, the potential problems were a small price to pay considering the way I felt without anything at all. But that is me.

    I wish you luck!

  • My illness is severe so severe I'm completely useless at my worst. So I'm hoping the side effects are worth it. I'm currently enjoying my first steroid injection but after just one week I'm starting to feel a flare up coming on. My specialist wanted to put me straight onto combi given my sisters history & my blood results. I kindly refused on the basis that if I did suffer serious side effects we wouldn't be able to understand which medication was the problem. I agreed that I would gradually add other medications based on the results. I'm going to go for it & take the dose of MTX. Thanks for your input. Still terrified though 🙈

  • I think we all were terrified that first time, staring at the little yellow pills. But MTX is now my best friend, and keeps me in good shape. Before I started I could hardly get to the bathroom, and now I walk miles every day. It can be a lifesaver, so try to think of it that way instead.

  • I really hope this is the case with me. I'm happy it works for you. Xxx

  • Just because a drug combo didn't work for your sister does not mean it wont work for you. Standard protocol for RA is Methotrexate(MTX) and Plaquinell. Ask for some Folic Acid at least 1mg to take daily. Folic Acid helps counter MTX side effects.

    Bottom line is you have to communicate with your DR. If you don't think they are listening to you then fire them and get another. Ultimately it is your life and your disease. Do your research, make notes and ask many questions.

    Many people are appalled at the idea of firing their specialist. Think of it this way, you are paying for a service(regardless if it is insurance, medicaid or medicare) it is a service. If you feel your needs and wants are not addressed or your Dr wont communicate with you then fire them and find one who will. It is YOUR life and You choose your own destiny. The more you take charge the less frightening the entire process of managing RA will be. Take charge....own it and be the master of it, don't let it master you. Blessed Be

  • I was so scared too try MTX, but I can not deal with this pain anymore so I just swallowed the pills. Guess what? I had no side effects except being sleepy for a day and a half. I take my 6th dose tomorrow. Apparently it takes between 8 -12 weeks before you notice the positive effects.

  • I was worried sick about taking it but as Helixhelix has said it has been wonderful for me. Yes, there are side effects, but these can be controlled (frolic acid) and I found injecting MXT cut out a lot of them.

    I had 18 months of feeling so much better - the last 7 or 8 months have regressed a bit but an increase in my dosage has helped me get back to feeling pretty good again.

    I have done everything my GP and Rheumy have told me - I trust them, after all they are the experts!

    It's daunting, but give it a try, keep an open mind - the benefits have far outweighed the side effects in my case. Keep positive x

  • I loved the frolic acid! Wish it was available on prescription but I fear my ancient joints are past it.

  • Should have said I loved the idea of frolic acid (big grin) .....

  • Frolic acid ? U mean folic ?

  • You'll see that quite a lot here, love it..... predictive text!

  • My use of 'frolic' with acid was deliberate! The predictive text earlier in this thread appealed to my sense of humour!

  • I also have faith in my rheumatologist I just have so many red lights when it comes to the horror stories from my sister. I should really move on from those fears.

    I've never missed an appointment or any medication. I eat healthy & exercise. At the moment I'm feeling good, really positive. I hope I progress rapidly the idea of going back to no mobility & agonising pain is far more terrifying than any side effects.

    Thank you.

  • I took my dose & up to now have had no side affects. Although I did feel exhausted to the point I couldn't keep my eyes open but that was literally for around the 6 hour mark. Thank you for your input.

  • Don't be scared to take the pills, trying them is the only way to know if they will work for you. 10 mg is not so large a dose to start with and you will be monitored closely with regular blood tests to check how your body is coping. If you do get side effects you will probably know within the first 12 hours or so if it is simply headache, nausea or such like. It's a good plan to take the mtx before bedtime so you can sleep through most of that! Anything else upsetting your body shows up in the blood tests (such as anaemia or liver intolerance). You should have been given a record book to keep too and this has the direct call number to your hospital or rheumatologist so you can contact them if worried at any time.

    Good luck - take the pills and hopefully you can be in control of your disease rather than it controlling you. If they don't work, you can just stop (after all it is your body!) and move on to something else. I was just like you at the start and it has helped me a lot. Xx

  • Thanks for your input. I've taken the pills (before bedtime as advised) & have had no side effects apart from feeling exhausted for a little more than 6 hours. I can live with that plus I'd enjoy the extra sleep needed to combat this. ☺️

    I have my record book & have been advised to take it practically everywhere with me.

  • Well done! Fingers crossed it is onward and upward for improvement for you now. :)

  • Hi........like you I was terrified of Mtx & refused it for years hence leading to a painful time. Eventually the pain was just too much & I reckoned Mtx couldn't be any worse! I ended up with 7 years on varying doses & almost forgot I had RA.

    It did disagree with me then, but I have very little joint damage & could kick myself for not trying Mtx before I did.

    It's entirely your choice & you can stop & try something else if it doesn't suit you....but I'm sure you will have read on this site for some it's the answer & for some it's not!

    Good luck whatever choice you make!

  • Hi

    MTX takes up to 12 weeks to actually start working as long as you stick to the prescribed dose and take on the same day each week you will be fine you may feel a little sickly but this will ware off after a few hours, I have recently gone onto injections and its the best thing for me, You also need to get your blood monitored regular probably every 2 weeks to start with this will show up any obvious side affects there really isn't anything to worry about but as you mention what works for one may not for another but MTX has been a god send for me and i'm not sure were i would be without it.

    Hope this helps to re-assure you and good luck.

  • Dear Tia

    Why don't you give the NRAS helpline a call and they can organise for you to actually speak to someone over the phone who is well managed on methotrexate and actually talking it through will I'm sure help. There is a huge amount of evidence to show that mtx is a very safe and effective drug for RA take a look at the section on the NRAS website nras.org.uk/dmards. For some people if they have issues with the tablet form of mtx there is always the methotrexate injections instead. As it bypassed the gut some of the issues your sister may have experienced may be avoided. The key thing to remember is your disease profile may be entirely different to your sisters and your clinicians will be doing the very best for YOU.

    Regarding the best time to take your methotrexate many people suggest before going to bed as if you do feel a little nausea or fatigued until your body adjusts to the meds you can sleep through the side effects (if any). Also taking folic acid has no doubt been discussed with you and that is very important to take as prescribed. Good luck and do give us a call on 0800 3987650 (Mon - Fri 9.30 to 4.30)- We're here to help you every step of the way.

  • I was diagnosed at the end of June and prescr. MTX (15mg) and folic acid. It took me a week to pluck up courage to take them, and what happened? Next to nothing. Just slight tiredness a few hours after taking them, so now I take them before going to bed.

    I know we're all different with meds, but I hope it suits you and help you. If not, Drs will have others to try but give the MTX a chance. It might help you so much. xx

  • I've taken MTX for over 35 years. It's been the best drug for me. Any problems should be picked up quickly with regular blood tests by your GP.

  • I was scared too. It took a couple of months to really work but it gave me my life back. I am 64 and am active again. People have taken it for years with no problem. A little sucky feeling every week but your Doc can help with that. Hang in there!

    Alice

  • Hi Tia. You don't say whether or not your rheumatologist knows about your sisters problems with mxt. I think that is important. If he/she does know and they have still prescribed mxt then you can feel assured that they are happy that the same problem won't necessarily occur know. If they don't, then they need to be informed. Methotrexate is the gold standard drug for RA and is very successful for many thousands of people including myself. I have taken it for 14 years now without any significant problems. I wish you well. x

  • Hi

    My Rheumy is aware of my sisters medical history. He decided to start me on MTX 10mg & have my blood tested weekly for 4 weeks. He's then going to up my dose to 20mg & have my bloods done every 2 weeks for the next 3 months. I'm happy with this & glad he has taken my worries into account.

    So pleased it is working for you. Reading all the comments has reassured me greatly. It works well for so many people.

    Thanks for your input. Take care.

  • One of the main worries when taking Mtx is how it effects the liver. Read some interesting research on antioxidants that have a protecting effect when taking Mtx. These antioxidants do not interfere with the efficacy of the med. Beta- carotene seems to be the most potent, research also on L-carnosin. Might be something to look into:)

  • I'm having the same problem my mum had a very bad reaction to mtx I still not taken it yet been scared too but I'm going to I keep saying to myself I'm not my mum I can take things she can't so I know we're your coming from thank you everyone for your advise on this it's been helpful to me too x

  • I took mine & had no side effects apart from feeling exhausted for a little over 6 hrs. I took my dose before bed but didn't feel tired until around 12-16hrs after taking my dose. I feel pretty stupid now for being so afraid. I just hop it works for me & I can relax a little knowing my Rheumy is monitoring myself closely.

    Good luck don't be afraid.

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