I’m a newbie

[Reflexer]

hi all, literally just joined the group. Was diagnosed last month RA just had second injection of methotrexate feeling quite unwell with waves of nausea, dizziness, trembling and headaches mostly every day, so much that I have to lie down, was wondering if any of you had this and that it’s common or maybe I’m suffering with something else? Any comments would be appreciated

[welsh12]

Hi welcome it takes a while for your body to adjust it took mine at least 6 weeks unfortunately

[Reflexer in reply to welsh12]

Thanks Welsh 12. Doesn't help that I am going abroad end of June and don't particularly want to go feeling like this!

[welsh12 in reply to Reflexer]

Hi it can be different for each of us hopefully it will ease quickly fatigue and mild nausea were my side effects but great when they ease best wishes

[Gottarelax]

Hi Reflexer.,.sorry that you're having such nasty symptoms...they can be associated with the methotrexate but at the same time, it is worth getting them checked out. What dose are you starting on and are you also taking folic acid (dose and how often?). And welcome to the club no one wants to join!

[Reflexer in reply to Gottarelax]

Thanks for your reply Gottarelax, I've started on 15mg of methotrexate and the same with folic acid the day after. I was also wondering if i'm like this because it's new to my body and that this will get better or is this it

Maybe someone out there may have experienced this?

[Gottarelax in reply to Reflexer]

Two things could be at play. Firstly, it's a fairly high dose to start on. When injected, the dose acts like a higher dose than if you take the tablets. I started on 12.5 mg orally and then went up to 25 mg orally before switching to 25 mg injection. There is definitely a period of your body getting used to it. Secondly, I have been given 5mg folic acid to take every day other than the injection day and I think that really helps. I also take at night so that if there are side effects, I sleep through them.

[Reflexer in reply to Gottarelax]

I've left a msg with RA nurse to call me back, I will discuss dosage options when they call. I've only taken the injection twice, last week on a Tuesday and felt unwell later in the week and on Saturday and I took it yesterday midday and feeling unwell today there seems to be no pattern at the moment, thank you for all your suggestions and support, I'll update when I know more.

[welsh12 in reply to Reflexer]

Hi side effects often worse day after to 48 hours as others said dose in evening

[Reflexer in reply to welsh12]

Thank you for this suggestion

[Gottarelax in reply to Reflexer]

Good luck. There is an option of 7.5 mg injection and definitely ask about having 6 day supply of folic acid.

[Reflexer in reply to Gottarelax]

Will do, thank you

[Cat-E]

I was put on 15mg oral mtx and had horrible diarrhoea for 2 or 3 days after taking it. Upping my folic acid to 3 times a week sorted it, (initially upped it to 6x a week but this made me constipated!) and I have recently increased my mtx dose to 17.5mg with no adverse effects. Hope you can get sorted, especially before your holiday

[Reflexer in reply to Cat-E]

Thank you for your input, will discuss with the medical team to get it sorted. Glad to hear that you stabilised

[Sebastian247]

Hi there. So sorry to hear you're feeling unwell.

I had the same experience when I started MTX (15mg orally, increased to 20mg because it wasn't working ). Things improved after I increased the folic acid to 6 days a week which stopped the nausea, so definetly ask about that,

I paused taking MTX recently for a month because I have been feeling really unwell and wanted to 'test' if it was the MTX or something else. I started taking it again on Monday and am experiencing similar side effects to you, it is pretty unpleasant at the moment.

Hopefully things will improve as your body adjusts, and hopefully it works on controlling your RA symptoms.

Very best wishes.

[Reflexer in reply to Sebastian247]

Thank you for your comments and sharing your journey. I’m thinking of stoping it for two weeks go on holiday end of June as I don’t want to feel like this there. So if I do this I’ll have to start again, wondering if ill be just as unwell when I start again or not as it’s only a short break ??? How long did it take you for the nausea to stop and for you to feel ok after you stopped? I’ll speak to medical team too

[Sebastian247 in reply to Reflexer]

It probably took a couple of weeks, at least, to start feeling better, but I have been on it for two years.I'm not sure how this would work for you, given you've not long started taking it. The side effects may stop quickly, but you might find your RA gets worse. Definitely speak to your rheumatologist or nurse.

I'd be hopeful that the worst of the side effects will pass fairly quickly. Especially if your taking folic acid 6 days a week. But of course we can all react differently to medication.

Hope it works out so you can enjoy your holiday. Seb.

[Reflexer in reply to Sebastian247]

Thank you. I only take 15mg folic acid once a week, the day after I take the injection !!!

[Sebastian247 in reply to Reflexer]

I'm on folic 5mg a day, apart from the day I take the MTX, 30mg a week.

[Reflexer in reply to Sebastian247]

I’ll look into it thanks

[Otto11]

Hi Methotrexate can cause these symptoms until our bodies get used to it. We are all different & some suffer with side effects more than others. I remember when I started Methotrexate I had dreadful nausea & vomiting for at least 6 weeks but it started slowly improving. It did improve & I was fine & stayed on it for 15 years. Please ask your Rheumy Nurse or GP for their help & advice.

[Reflexer in reply to Otto11]

Thank you, hopefully speaking to medical team today. Just wrong time to start when I’m going on hols in a few weeks !!!

[Otto11 in reply to Reflexer]

Oh bless you. Did they not mention that? They may suggest you have a break from it & restart after your hols. You can always ask them.

[Reflexer in reply to Otto11]

No they didn’t. Still waiting for a call probably next week now

[Otto11 in reply to Reflexer]

🤞x

[Flowersaregreat]

Welcome to the world of RA xx

[Reflexer in reply to Flowersaregreat]

Thank you, I feel better knowing there are others out there and so grateful for their shared experiences

[Retirednhs]

My advice would be that you contact your RA helpline as that' could mean it's not the right drug for or the dose is too high, so sorry you are having a bad reaction. But all drugs affect people differently .Good luck with getting itcsorted and take care

[Reflexer in reply to Retirednhs]

So grateful for everybody’s input I’m on it now making enquiries with the medical team, thank you

[Happy5]

Welcome to the world of RA and MTX which none of us asked for.

MTX is a strong medication and it takes your system a while (about 3 months ) to adjust to. A lot of us take our meds in the evening to sleep through the worse of our symptoms. Also discuss with the RA specialist nurse about your struggles. I was prescribed meds to offset the nausea for days round my injection day. Also we're advised to drink lots of water to help the body deal with the effect of the meds.

I was wiped out and felt dreadful in my early days of taking it, but now have a reasonable status quo.

All the best.

[Reflexer in reply to Happy5]

Thank you for your comments. I seem to feel unwell the days after I have taken it not immediately when I take it. I drink lots of water. I just can’t eat as don’t want food and can’t even think of it. Waiting to speak to RA nurse

[Happy5 in reply to Reflexer]

Yes I get spells of feeling like this so know how you feel.

[012703060610]

Late to the party, but all the comments are in line with what you are experiencing. I started on oral and could not function. I looked 9 months pregnant. Huge GI distress. We went to injections and I needed 25 mgs pretty quickly. I gave MTX about 2 years. I was almost willing to go off of it because it was so disruptive to my life. I am on Humira now. It is a miracle drug. Way easy injections, twice a month. I do feel 1-2 days of blah but I can't explain it more than that. I think I just feel more sluggish with brain fog. so to all the folks out there, Humira is an option. You have to fight for it with insurance. I have other autoimmune conditions and Humira is treating them all. I had to show insurance that MTX was damaging my liver, which it was, to get it approved. Supposedly it will get taken away later this year and I'll be put on something similar. If it does't work or has horrible side effects, insurance has to reconsider. The folic acid also helped me from losing my hair on MTX.

[Reflexer in reply to 012703060610]

Thank you for your comments. I’m stopping the injections for a few weeks as going on hols I was out on mtx pretty quickly with no other options discussed so need to do research and I have learned a lot from all the lovely people in this group that I am now better informed.

[Angels54]

Hi , I started on tablets felt sick and ill I as taking 8 tablets , they were cut down to four which was better, not on them now , got that J couldn’t tolerate them , hope you get sorted 👍

[Reflexer in reply to Angels54]

Thank you for you reply. Speaking to RA team

[Tealblue2]

hi. I’m sorry to hear you feel like this. I had the same and it took weeks to settle. But then that didn’t last long and it continued to make me feel unwell most weeks, getting increasingly worse by the end of 6 months. I have now been taken off it as it wasn’t working and i collapsed and ended up in hospital.

Just wanted to say be careful with the sun on your holiday. When I went aboard last summer, I had only been on the tablets for about a month (I got moved to injections at Christmas) and the sun affected me badly. I ended up with a rash vest, cap and sitting in the shade. Just wanted to warn you to be prepared

[Reflexer in reply to Tealblue2]

Thank you for this. I’m actually stopping the medication so won’t be taking the next dose on Tuesday. I’m away from 29 June so hopefully it will be out of my system by then (only took 2 doses) I will pick this up with medical team on my return and look at all options, my body was going into trauma and that’s not right.