Methatrexate

[Den73]

Good morning.....feel the need for some advice this morning please.I saw my rheumatologist yesterday, always feel so rushed when I see him, seems to soeak over me not to me😔

In March he prescribed 20mg of Methatrexate and it affected me so I only took the one dose as according to the pharmacist and doctor I suffered from Methatrexate toxicity.

So yesterday I duscussed with him a lower dose as he insisted thsts what I should be on so he has told me to take 15 mg he is cinvinced its the steroids that made me unwell,nothing to do with the Methatrexate, so the question is why am I not unwell now, still reducing the Pred down to 27.5mg, he says you have to get off them, yes I am trying I am reducing by 2.5mg every week cant do it faster than that????? And thats what he agreed to in his last letter to me.

So my question is ....is 15mg still too high a dose to start Methatrexate...i have read that a start dose is between 7mg and 10mg......I just dont want to go down that road of unwell again.

I realise I have to be on a treatment for PMR and Sjorgens abd apparently the Methatrexate will help both. Xx

[MrsNails]

Hi, it’s usual to start on a half dose ie 10mg as 20mg is the usual starting dose of MTX

What symptoms did you have for the Dr & Pharmacist to say you had MTX Toxicity? Did you drink plenty of water when you took them?

I’ve successfully taken MTX in the past, with breaks because of Surgery & later Fatty Liver Disease. There is a lot of information in FAQ’s

MrsN

[Den73 in reply to MrsNails]

Hi Mrs Nails thanks for your reply.I took the MTX at night with my dinner and yes I did drink plenty of water. As mentioned I am still taking Pred which I took in the morning, at that stage it was like 40mg.

I felt very disorientated, dizzy, clammy and extremely nauseated and a sore thriat,initially I thought I was getting the flu.

Glad you mention 10mg, think thats what i am going to start with and see what happens, thank you. Xx

[MrsNails in reply to Den73]

Bless You that wasn’t a very good start - l remember having them in a little pot & swirling them around but at that point l was on 18mg Pred & suffering a lot of side effects from the Pred.

I know l felt awful but knew l didn’t have a choice & l sat it out, l took mine after my lunch drank a couple of glasses of water, then took my Folic Acid (5mg) for the other six days.

There are people who can’t take MTX but it did what l needed at the time. I’m now on 5mg Pred but that’s for the long term for me but it could be worse.

Good Luck 🍀 l hope it works for you…..

MrsN

[Den73 in reply to MrsNails]

Thank you for the advice re the folic acid he told me to just take it the one day, think that may have been the problem too so I will take it the day after the MTX for 6 days, yes I think I will just have to sit it out and also stay on 5mg Pred although he wants me to stop altogether, not too keen on that as I am already feeling the pains of PMR. Appreciate your input xx

[PMRpro Ambassador in reply to Den73]

Aye well - your adrenal function will have some input on totally stopping the pred!!! Neither MTX nor folic acid will influence that!

[PMRpro Ambassador]

"abd apparently the Methatrexate will help both. Xx"

Maybe, Maybe not. There are a lot of PMR patients for whom it DOESN'T work - just makes them ill or plain doesn't work. If it were reliable they would use it and not pred - they don't.

If he is going to be that intransigent, I think you need to discuss that fact with your GP and see if it is possible to see someone else.

[Den73 in reply to PMRpro]

Thank you PMRpro, I am willing to give it one more try, I have already spoken to my GP about changing to someone else I just feel this rheuamy is not taking me seriously enough. Doesnt seem to support me in any way when I suggest something else, I sort of at least expect him to discuss any other options. Thank you for advice. Xx

[PMRrunner]

I have taken methotrexate for nearly three years. I started on 10mg and folic acid one day a week. When I increased the methotrexate to 15mg I was exhausted for 2-3 days afterwards and had some nausea. I upped the folic acid to 6 days a week which helped and the side effects were tolerable but not when the methotrexate dose was upped to 20mg. I'm now back to 10mg methotrexate, folic acid 6 days a week. Tiredness/exhaustion are still there but manageable.

[Den73 in reply to PMRrunner]

Thank you for that information PMRrunner, I am going to give it a try, mainly for the Sjorgens as I ammled to believe that it can turn to complications if not treated was fuagnosed in August last year and omly been taking Pred, so worth a try, will stick to 10mg and take the folic acid 6 days a week. Xxx

[Rynn33]

Hi. I’m on MTX and take 5mg folic acid 1 day per week. If you’re going to take the folic acid 6 days per week I’d suggest you check with GP first as the 1 day tablet might be too strong for daily use.

[Den73 in reply to Rynn33]

Thank you Rynn33 thats good advice re the fic acid, I will try the 1 a day and see how it works as I didnt take it all last time, miss communication !

[PMRpro Ambassador in reply to Rynn33]

No, it is 5mg tablets they use and the idea is that 1x weekly is the minimum, 6x a week the maximum.

[Den73 in reply to PMRpro]

Hi PMRpro I notice on the dosage of folic acid it directs me to take 1 x tablet once a week on a Friday, I am going to start the MTX on monday should I start the folic acid today (being Friday)?

[PMRpro Ambassador in reply to Den73]

There isn't much point taking folic acid in advance of the MTX, it stops the production of folic acid in the body so it is far more sensible to take the folic acid in the day or two after taking the MTX as it is a replacement therapy, the side effects are due to lack of folic acid. I can't see any advantage to taking the folic acid so long after the MTX, the damage that causes the side effects will have 4 days to happen. I have never come across such a delay before.

This is the NHS direction - take it the day after the MTX.

nhs.uk/medicines/methotrexa....

[Den73 in reply to PMRpro]

Thank you, that was my thought, far more sensible. I will take it 2 days after.

[Blackcat1M]

Sorry to hear your having problems with mtx.

When I started I was first on 5mg and then worked my way up to 20mg .

I had blood test every two weeks, then every month and now my bloods are done every three months.

My only problem was bruising but nothing to worry about.

I hope you get sorted soon 🌼

[Den73 in reply to Blackcat1M]

Thank you Blackcat1M for your advice, I do think its all yo do with the dose, 20mg was definitely too high as a first dose, so I am really hoping ot goes ok this time round. Xx

[krillemy in reply to Den73]

When I started MTX, I was also first on 5 mg and then gradually increased to 20 mg, with a 2.5 mg increase every 2 weeks. I take 5 mg of folic acid (which helps with side effects) twice a week. I do feel a little tired the day after taking MTX. I tried increasing to 25 mg, but then I felt very tired and experienced nausea. MTX is not a miracle drug. I cannot reduce the dose below 11.25 mg prednisolone, but it makes me feel less ill, reduces brain fog, and I am less stiff.

[Den73 in reply to krillemy]

Thank you krillemy that is very helpful, especially the increasing of dosage of mtx

[Knitwits]

good morning I have been on 15mg of methotrexate for over a year now. I started with tablets and they made me feel really ill, so I was changed to the metoject which is an injection you give yourself into your muscle. And I have been much better. How are you taking yours.

[Den73 in reply to Knitwits]

Hi Knitwits in tablet form, I did see one can have injections, interesting

[Knitwits in reply to Den73]

The injections are better as they go into your muscle where as the tablets go into your stomach, which then causes all sorts of problems. I also take folic acid 6 days the day a don’t is the day of the injection. I also take my injection at night as I find it doesn’t big make me feel as nauseous.

[PMRCanada]

I started MTX 2 years ago, injected which I understand may result in less side effects than oral medication. I take my injection at night and ensure I drink plenty of water the next day. I also take 5mg of folic acid the other 6 days of the week. I’ve had no side effects.

As far as MTX dosage goes, surprisingly I was started at 25mg (which I questioned). It was ok until the first winter when I got sick for 4 months with all the viruses circulating. My rheumy and I decided to cut down my dose to 15mg. Much better. No illness this winter but still able to lower pred dose.

It may be that MTX doesn’t agree with you, regardless of dose, folic acid, and form of consumption. I know of folks who felt ill with side effects of fatigue and nausea regardless.

Did you experience any negative side effects from taking pred alone? If not, then your doctor’s assertion that it is the pred making you feel ill, is not accurate. It does take a few months for the MTX to kick in, but some patients never make it that far along on it.

[Den73 in reply to PMRCanada]

Hi PMRCCanada thank you for your reply.I have never had MTX before so will only know if it doesnt agree with me after a 2nd try.

No I have never experience that awful feeling whilst on Pred steroids, my eyes are sore and fatigue which I would say could be the only side effects but then sore eyes and fatigue is part of Sjorgens as well, but I disagreed with him strongly that it is the steroids, because now I am taking the steroids and nothing else and I am fine.

But willing to try again on Monday and use with folic acid and only 10mg to start and work up to 15mg over 2 weeks and see what happens.

Thank you again for your experience. Xx

[PMRCanada in reply to Den73]

You are quite right….you will not know until you try. Even though we have a shared condition (PMR), we can experience medication differently.

All the best in your efforts.

[Den73 in reply to PMRCanada]

Thank you I appreciate your encouragement xxxx

[Musiclady18]

I have been on Methotrexate for at least 3 years now and only take the Folic acid the day after taking Methotrexate. I take the Methotrexate Saturday evening with my dinner and on Sunday I take the folic acid with dinner and all seems to be working fine. Could it be the folic acid that you are taking every day after the Methotrexate? Not sure about that dose, maybe that's the issue?

[Den73 in reply to Musiclady18]

Because of miscommunication I never took the folic acid at all, so I will take your advice i will take it the folic acid the day after.He just prescribed folic acid didnt tell me what it was for🤔

So I am quite eagre to see what happens.....will post results 🙂 xx

Thank you for your advice.

[Gaz227]

I have been on pred for nearly 9 years now can’t get below 4.5mg , 2 years ago I started on MTX 7.5mg injection for both my rheumatic issues and as a steroid reducer , it didn’t work , he wanted me to go straight up to 15mg MTX I said no I wanted to see how it affected my body , I am now on 12.5mg injections once a week with 5mg folic acid the day after injection , seems to be helping my Rheumatics but doing nothing for pred reduction , I actually believe it’s the pred that is controlling my pain not the MTX but the MTX is needed to stop my joints from deteriorating . If your on MTX tablets ask for the injections so easy and Less side affects in my opinion . Good luck getting off the pred , i haven’t got an answer for that I was told if my adrenals don’t fully switch back on I will be on a small dose for life , even a drop of 0.25 of a mg knocks me off my feet . 🤞 for you .

[Den73]

Thank you a Gaz227 thank you for your comments on pred reduction, it is certainly a battle I am diwn to 27.5mg but increased it slightly to 30 over the weekend because iut of nowhere I had a polymyalgia flare, was in such pain my temples were sore again from GCA still very tender this morning and tonight I start MTX Only going to start on 10mg. And increase to 15mg

I suppose trial and error to get to where we want to be🤷

Thank you for the info on the injection because thats my biggest problem my digestive system is very sensitive to various drugs, i most certainly will request if I cant tolerate this 2 week MTX because it makes a whole lit of sense for me. Xx