Starting MTX - after HChlQ for 1year. Really anxious :)

[nims1]

Does everyone suffer from nausea/sickness etc as side effects of MTX for RA? I've been really reluctant to start MTX as worried about how it will affect work. I'm Sero positive for CCP (very weakly), and it seems that this might indicate a more severe disease in the long term. So hard to weigh the beefits vs risks.

[trish1957]

Hi I've been taking MTX for four years now and never had a problem. I was very apprehensive at the start after reading other people's experiences but once I started taking it I found a real difference.

Good luck

Trish.

[nims1 in reply to trish1957]

Hi Trish1957, Thank you for reply - there don't seem to be many positive experiences posted, so that is heartening to hear. I need to get hold of the prescription today, am thinking of starting it on Friday night so that I have the weekend to be at home if necessary.

I joined this forum a while ago but have only just started browsing, as have a day off today.

[trish1957 in reply to nims1]

Hi again

Because I take the maximum dose of 25 mg I split it into two days and normally take it before bed. I'm sure you will find what works best for you.

Trish

[nomoreheels]

This is how my Consultant chose to treat me, HCQ for a year then double therapy MTX. I'm also seropositive but high anti-CCP & thankfully have suffered no damage of note.

As for side effects I'm afraid it's impossible to predict but there are things you can do to ease them if you do have any of the core common ones particularly. The first will be prescribed & that's 5mg folic acid. There's no recommended dose as such so it can vary from 1 tablet per week to 6, the dose I take. I started on tablets, 15mg, & was advised to take 2 with meals so the dose was spread throughout the day & that suited me well. I went onto injections about 7 years ago when I needed an increase & started with nausea, generally they're better tolerated as the MTX doesn't go through the digestive system so if you do have disruptive side effects it doesn't necessarily mean you have failed on MTX.

I'm sure you'll receive various responses, questions about MTX do generally, it's just one of those DMARDs! Many do well on it, others not so but it's been the most widely prescribed med for RD & the majority stay on it for longer than don't. I hope you're one. 🙂

[nims1 in reply to nomoreheels]

Thank you for your reply nomoreheels. I'm starting on 10mgs +folic acid. Spreading the tablets over the days seems like a good idea, though that wasn't mentioned to me by the consultant, taking them at night was suggested. She wanted me to start 6 months ago, but I had just lost my father and did not feel I would be making an carefully considered decision. However, I went for the suggested xrays/MRI 4 months ago, so this time we had those results and I was more prepared with questions etc. She showed me tiny erosions in finger joint bones that she said were early signs of joint damage, so that persuaded me.

It is just really hard coming to terms with having a chronic condition, after having minimal contact with doctors/hospitals all my life (other than in relation to my parents appointments).

[helixhelix]

Yes it's a shock being diagnosed. And up to that point I think all I had in the bathroom cupboard was an out of date bottle of aspirin.

But MTX is my best friend drug. Overall it has been great for me and got the disease under control - I'm also anti-CCP positive. I also now take hydroxy and sulpha, but am fine. No side effects to speak of. And have been on them for 6 years + now. On forums like these you tend only to hear from people with problems, as people like me rarely post as there's nothing to say.

[medway-lady]

I so agree with helixhelix, although don't take MTX but Leflodamide which for me is great.

[Amhoarten]

I take Mtx and sulfasalazin and apart from a bit of acid reflux (for first few weeks only now settled) I have had no nausea or sickness at all.

[nims1]

Thank you Helixhelix, medway lady and Amhoarten

All your comments are really encouraging, and its absolutely true, people do tend to post about problems. I appreciate everyone taking the time to reply though. Once I find my feet I hope that I can be of some help to others too. The NRAS site has been a really useful source of information, and signposted this forum.

I couldn't get the prescription today, it will be ready late tomorrow or early Friday morning. that means I will miss my opportunity to start MTX on Friday as I've been told to take the folic acid 2 days before. I think I will try and ring the Rh nurse tomorrow, because it appears that the the folic acid dosage frequency is quite variable.

[Dianedplm in reply to nims1]

mtx was brilliant for me until I had a couple of liver spikes in my bloods and was taken off it. You cannot imagine how happy I was on Monday when my specialist said I could start again :). Aside from the side effects, I did get hair loss and the first couple of weeks I was a bit low the day after (mine is a higher dose though) Mtx works for me. I also take 2 x plaquenil daily.

Just make sure you take the folic acid.

[Izabella81]

Hello there!

Im on plaquinil and methotrexate...since they are taken after supper i just pass out come bed time. I cant say im unable to work during the day,but if i take my other daily meds without food i feel really sick. So just make sure u take ur meds as prescribed and space them out. Now i always make sure to have a small bite to eat while taking a pill (even a vitamin) so i dont get nauseous.

Hope you feel better!

[Lizzieuk1]

I took mtx for 6 years with great results, it did make me feel a bit iffy for the day after taking it but otherwise I did well, unfortunately after my first child things went a bit crazy and it stopped working for me. I'm now on rituximab as went through a fair few options after my twins were born and struggled to find a drug that was effective! I'm also sero positive and anti ccp +ve but appear to be lucky with very little damage - though I'm only 40 still so early days.

Go for it with the mtx I had no other side effects and it was great for me- wish I was on it now as the ritux has a horrid list of potential nasties to worry about!

[Dodo1943]

I'm one of the lucky ones (fingers crossed) inasmuch as I've not knowingly suffered any nausea from Mtx and, in retirement for 15 years, I accept fatigue as 'par for the course' after physical activity and sleep even when I have no intention of doing so! Apart from bone density medication, I take all my tablets during breakfast of cereal with half a pint of milk and trust in my body to cope: I'm sure a positive attitude is an advantage.

Good luck!

[Bookworm55]

I have had no problems on 17.5 mg of methotrexate so far( a year) . I also take hydroxychloroquine - and folic acid 6 days a week. Must admit I'm glad I didn't read the experiences of some others before I started taking it! Everyone is different of course!

[BoneyC]

No real problems, I've taken MTX since I was about 16, over 35 years, was one of the first to try it for RA. No internet access those days so I didn't have cause for concern. Most patients are fine on it. Hopefully you'll be ok too.

[nims1]

Thank you Izabella81, Dianedplm, LizzieUk1, Dodo1943, Bookworm55, BoneyC,

for sharing your experiences. One thing I'm trying not to think about is hair loss I have thick dark hair so loss will be very obvious. I have a feeling the HCQ has caused some as it is definitely thinner at the front from a year ago, when I started.

Might need to leave starting until next weekend. Avoided calling RA nurse today, felt a bit silly as I haven't even started yet. I have been waiting for a physio referral for a month, it turns out I was meant to self refer even though the letter from consultant was to GP asking them to refer me. Only found out as I queried when I should expect to hear yesterday at the surgery whilst dropping off prescription for MTX! Live and learn, and better late than never!

[AgedCrone]

There are lots on this site taking Mtx very happily. I had seven blissful years on it .& would try it again as I have very little joint damage.....if I weren't now on a biological.

Forget all the horror stories ......it will either suit you, or it won't , but until you try it you will never know!

Go on...bite the bullet!

[nims1 in reply to AgedCrone]

Thank you for your reply AgedCrone.

I know that's what I should do. I didn't start at weekend because the other question I need to clarify is about vaccinations for travel - we are thinking about a big holiday which may need use of a live vaccine - was told by consultant to have those before starting MTX if we we had a holiday planned this year. Have requested info from nurse - just waiting to hear what I might need and if so how long I would need to wiat before starting MTX. So many things to think about.

[nims1]

Hello everyone, Just thought would pop in and say I started the MTx 2 weeks ago (10mg), I feel a bit groggy 1-2 days after taking but its been OK and for now am only taking folic acid once a week a couple of days before the MTX, so still have the option of increasing this.

Just hope that it has some effect. I need to go to blood the first 2 week blood test on Friday.

Thank you again to everyone who posted, much appreciated.

[nomoreheels in reply to nims1]

That seems not too bad, hopefully the grogginess will lessen the longer you take it but if needed you know there's the option of increasing your folic acid. Just need good bloods now & you're on your way to positive results hopefully!

[nims1 in reply to nomoreheels]

Thanks Nomoreheels! Fingers crossed.

[nims1]

Boring Update: Have been on 10mg MTX for 4 weeks now, first blood tests after 2 weeks was normal. Still have a bad headache the days after taking, but otherwise it is going OK. I chose to take it on a Friday night so as to minimise it affecting work. Early days yet so not seen much effect. Still hoping My next consultant appointment is in two weeks. This will be the third different person I see, as the fist consultant (who was brilliant) left - I only saw him the one time when first referred

Hope everyone had a lovely Easter.