Methotrexate - hints and tips please

[girli1111]

So... finally given in and agreed to try methotrexate. I'd appreciate any hints and tips, particularly regarding the timings of taking this and the associated folic acid to minimise side effects. I've been told I'll need fortnightly blood tests initially. Also, I'm currently on hydroxychloroquine sulphate (plaquenil), forgot to ask rheumatologist.. is it usual to continue with this alongside the methotrexate? I work a mon-fri full time week in a physical job which might influence which day I should take mess? Thanks

[nomoreheels]

MTX was my second DMARD. I started on 15mg & my Consultant recommended I split the dose to ease possible side effects & to take them with meals so I took 2 tablets with breakfast, lunch & evening meal. This worked for me as I had none of note except a little hair loss which eased the longer I took it. It is a common side effect, particularly if we're not replenishing enough folic acid, this is because of the way it works, MTX is a folate antagonist so this can affect the replenishment of healthy cells so we need to replace what is lost. I was prescribed folic acid the day after but that was increased to the day before as well when I reported the hair loss. As folic acid is prescribed off-license for use with MTX there are no guidelines so it's very much your Rheumy's preference though I would hope he/she will adjust your dose according to need. My current Rheumy prefers to prescribe 6 x 5mg weekly, just not MTX day, whatever the need.

I was on double therapy just into the second year of diagnosis (HCQ & MTX) but currently MTX & LEF. It's quite normal to do this or even triple therapy when trying to get the disease controlled but I would check with your Rheumy if this is the case for you & if you should continue your HCQ.

When I start a new DMARD I'm always asked to have fortnightly drug monitoring bloods, this is quite normal, it's just so your Rheumy can see how you're responding to it. Usually once it's seen your levels are acceptable you can then go on to monthly bloods, generally for me it's after 6 weeks but you'll be advised how you're doing & the frequency you'll have to have them.

I do hope you get on well with MTX &, more importantly, you start to see improvements. It can take 12 weeks or so but often you can notice subtle differences beforehand. I've been on it 8 years, now 17.5mg injections but have gone up to 20mg.

[JEM95]

It has been a huge bonus in my life - it's horrible and scary if you read about it, and I have suffered numerous side effects, but it has given me my life back 😀

It takes several months to start showing benefits, and I felt so yukky on it - but it only rarely makes me feel yukky now (nearly 4 years).

I am on 22.5mg injections, which I do on a Sunday evening before bed. I take Frolic acid 6 days a week too (not on MXT day) and hydroxychloroquine too (plus various anti inflammatories and pain meds).

I feel marvellous! (Well compared to how I felt when diagnosed). I know life will never be the same again and I will never be pain or symptom free, but I am in a good, manageable situation.

I have bloods every 6 weeks now, but my liver is a bit squiffy so needs regular monitoring.

Good luck - keep an open mind, ask lots of questions and don't expect instant results x

[Ali_H]

Hi Girli,

I'm on 20mg of MTX a week and 1 dose of 5mg of folic acid three days after the MTX. When I started the med I took it with porridge with fresh ginger cut into it. I also split my dose (1/2 in the morning and 1/2 in the afternoon). I've had no problems with it and last week when my B12, ferritin and folic levels were tested they were all at good levels - the folic acid was 0.1 out side of the 'normal' range on the 'too high' side! I now drop my tablets into a pot of natural yoghurt and take them that way with no nausea etc.

I do drink loads of water all week as this helps to prevent headaches and to flush out the toxins. I take a vidD supplement in the winter as my levels are the lower end of normal in the summer. I take a magnesium supplement - more for my blepharospasm as is the flaxseed I also take.

I started on fortnightly bloods and now am on 6-8 weeks bloods (supposed to be every 8 weeks but as I teach I fit them into 1/2 term so I don't need time out for bloods - my employer has always been very supportive and never objects to appointments etc which can be at awkward times in the day particularly the clinic appointments for my RA and for the eye clinic so I try and keep those appointments that I can have some more say in out of work time).

I hope the med works for you.

All the best

Ali

[DaniBeeLcLa]

I second everything the others have said and would only add one more thing-ginger ale on the day of and the day after if nausea is a problem. Watch for "brain fog" on the day or second day after your dosage...that's the biggest side effect for me.

I've been on MTX for a 16 months now in combo with plaquenil and a muscle relaxant for back spasms. I had been on sulfasalazine until the combo of it and an anti-inflammatory sent me to the emergency room with micro hemorrhages. Sorry if some of this doesn't make sense-its my MTX day. I don't plan to do things that involve major thinking for dosage day or the day after due to "brain fog" and spacey ness. That being said, MTX works great! I no longer need opiods for pain except on rare occasions(like taking care of my 11 month old niece for the day).

Hope it works well for you! Take care.

[Sophie_dog_lover]

I just stopped with mtx last month. I took it after dinner so i had a full stomach and then slept through the worst of it. I often took a long nap the next day too. For me, sometimes I felt pretty good the next day and could run one simple errand or meet a friend for lunch, but then I'd be exhausted. Other times I would be napping on and off all day feeling rotten (I never had much nausea, just exhaustion). It seems to affect some more than others. I was also on plaquenil and sulfasalazine at the same time. I am not just on Enbrel so we will see how it goes. Best of luck to you and I hope you respond really well to it! It works for lots of people and some are on it for years without an issue. Sending you positive and hopeful thoughts!

[RMarie86]

Hi! I was initially on methotrexate and took 20mg (although I believe I initially started on less than this) on a Friday night. I wrote the day and time I take it every evening on the bottle which I found helps particularly if you have other medication to take as well. I too had folic acid tablets and took one tablet each day, six days a week (not on the same day as the methotrexate though!)

Hope this helps. I know it's frustrating when you have to 'give it a go' to see if it works. You will initially start with blood tests every week or fortnight and once they are happy you will only go every month or so. My local hospital are very good and one of the rheumatology nurses will call me to tell me if my CRP level is high.

Fingers crossed it works for you.

Rachael

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