Methotrexate Advice

[DPJ66]

I’m due to start Methotrexate - 10mg once a week. I’ve also been given Folic Acid 5mg. The nurse quickly said take Folic acid 2 days before methotrexate. However, when I collected from hospital pharmacy he said take Folic acid 2 days after the methotrexate. I called my GP surgery and they said confirm with rheumatology, which is where I started! Can I ask what you all do please? Thank you x

[PMRpro]

You take folic acid the day AFTER the mtx and only on days you do not take mtx. No point taking it before - the mtx nixes the folic acid in the body because of the way it works, the tablets are a replacement to reduce the adverse effects like hair loss so you need it the next day. You may find 1x a week isn't enough - some rheumies increase it to as much as 6x a week for some patients so don't put up with things - ask if you can take more if you feel it might help.

If you speak to the nurse again - suggest she has a read of the NHS advice:

nhs.uk/medicines/methotrexa....

[DPJ66 in reply to PMRpro]

Thank you so much for your reply which is much appreciated x

[metha in reply to PMRpro]

I take 6 one every day but not the day I take my methotrexate, I used to take one ,then upped to 3 and now 6 , because I used to get really bad ulcers in my mouth,I'm fine now ,

[Krazykat26]

I take methotrexate..I started on 12.5mgs which has been increased to 15mgs weekly n I take folic acid 5mgs everyday that I don't take mtx ( 6 days per week) 🌈😽😽xx

[DPJ66 in reply to Krazykat26]

Thank you for your reply. Is it helping you?

[Krazykat26 in reply to DPJ66]

Oh yes!! It's been a life changer for me. I have subacute cutaneous lupus n my skin was constantly flaring affecting my mobility..well everything really!! I started mtx last December n my symptoms r much more manageable n I'm happy to say that I can now walk around at home!! 🎉🎊 I know it's not for everyone but it's definitely my wonder drug!! Now I'm trying to reduce the steroids!! 🙆

Good luck with it all 🌈😽😽xx

[DPJ66 in reply to Krazykat26]

That’s amazing news, so glad it’s helping you. I’m scared to start it so you’ve really helped. Thank you so much xx

[Krazykat26 in reply to DPJ66]

Yes I understand..I was scared to take it too but I only experienced some mild side effects..bit of a headache n I had some wierd visual stuff that went on for a short while n some tingling n the numbness in my arm n hand which wore off after about half an hour.

Some people have had gastric problems with taking it orally but I seem to have a stomach of steel!! For now anyway 😹

I decided to take mine on a Sunday morning as Sunday is a nice slow day..no appts etc!! I would suggest that u take it on a day that you're not doing much just in case u feel a bit rough.

I will also just say that the side effects that I have mentioned only happened to me for the first couple of doses n then no problems at all. 🤗🌈😽😽Xx

[DPJ66 in reply to Krazykat26]

That’s really helpful, thank you. It’s good to get the opinion of someone who has taken it. I’ve read so many negatives, it’s reassuring to read a positive one. Thank you so much xx

[Krazykat26 in reply to DPJ66]

You're very welcome 🤗

I did the same thing as u n posted on here when I first started it n I got wonderful reassuring replies so I'm VERY happy to help!! 😁🌈😽😽Xx

[Elena540 in reply to Krazykat26]

Hi there I noticed you mentioned about your skin and I have that as well so bad with flare ups lumps itching it’s the worst after 2 years on hydroxy one per day steroid creams menthol creams I’m at wits end. I also can’t walk more than 20 mins and the pain in legs awful and if I sit too long getting up and down is hard. So I’d appreciate your thoughts. I still work full time I was on gabapentin but stopped that as did nothing for me and can’t go back on steroids as have cirrhosis of liver???

[DPJ66 in reply to Elena540]

My skin isn’t that much of a problem luckily for me. One of the members who replied mentioned their skin so I’m afraid I can’t offer any advice. Do you have a rheumatology help line you could call? Alternatively speak to your GP. I hope you get some answers x

[Krazykat26 in reply to Elena540]

Hi Elena 🤗

I have just seen your profile n I remember u posting the pic of the rash on your arm 😖I did respond to that post telling u about the lotions n potions that I'm on n the meds but I didn't give any dosages..so I'll try n elaborate on them!!

I have a diagnosis of subacute cutaneous lupus (SCLE) which affects my skin..as of yet my inner organs r ok so I don't have too many problems with taking the oral meds!! I was originally on 400mgs of hydroxy daily..now I take 300mgs daily. I am taking prednisolone n have been unable to come off of them without a flare up of symptoms..now I'm on the methotrexate I have been able to reduce the steroids (currently on 7mgs per day).

Previously to being prescribed MTX I had been on an immunosuppressant called Ciclosporin which did not help at all n I found the tablets made me sick every time I took them!!

Thanks to this forum I was given a link to a site called dermnetz which is definitely worth looking at..there's all kinds of rashes on there!! So I checked out my particular diagnosis n associated rashes n yes it was spot on!! I read about the treatment for SCLE n mtx was recommended..so armed with this knowledge I asked my dermy at the next appt if I could try MTX instead of Ciclosporin n he agreed to change me onto the MTX!! 🎉

I won't go into the other stuff that I take coz u can read that if u go back to your post a month ago.

I'm sorry that you're so limited with the meds that u can take with your liver n I realise that what I'm saying might be of no use to u at all. I will say though that on hydroxy alone there was no improvements in my skin.

Who is looking after u? Have u been referred to dermatology? 🌈😽😽Xx

[Elena540 in reply to Krazykat26]

Thankyou so much I’m going to print off both your replies. I’ve emailed the derm but no reply yet I’ve upped the dose of htydroxy in the last week to 400 so will do another week and see how that goes but I will look into everything that you have sent me and I’ll let you know how I get on 🤗❤️

[Krazykat26 in reply to Elena540]

You're welcome...good luck!! 🌈😽😽Xx

[DPJ66]

Thank you. Scary reading x

[catno1]

Hi,

Since starting Methotrexate many years ago I was told, and prescribed, 5mg of Foliic acid to be taken on all days except the day I took Methotrexate. I take Methotrexate on a Monday & Tuesday to Sunday Folic acid.

I started on 15mg of Methotrexate which was increased to 20mg within weeks as I appeared to have no side effects. 20mg became hard work due to nausea. I've been taking a lower dose of 17.5mg since.

Although early days it may be wise if after sorting out this do also have a read about how to conquer side effects such as nausea. I do this by taking 10mg in the morning and the remainder, 7.5mg at bedtime. My dose is prescribed in 2.5mg tablets which is easy to split. There are many ways to help but hope you don't mind me sharing mine with you. Methotrexate comes in 2.5mg and 10mg tablets.

I hope above makes sense. Ridiculous that you've been left to sort the confusion on Folic acid out. Speak to your pharmacist who may push your GP to sort this out for you.

Take care,x

[DPJ66 in reply to catno1]

Thank you so much I appreciate your reply. I have 4 x 2.5mg to take once a week and they’ve given me 5mg Folic Acid to take once a week only. I may start Saturday and see how I get on.

Thanks again for your reply x

[catno1 in reply to DPJ66]

Good stuff! Not everyone has side effects but have a read with regard to the need for Folic acid and what's best.

I hope the Methotrexate helps, your dose is good to start on.x

[DPJ66]

I was given azathioprine first but had to come off it as my liver couldn’t tolerate it. Very difficult decisions to be made indeed. Take care x

[catno1]

Just noticed your like on my post. Please don't get too worried, after fifteen years of SLE it makes me angry to read how new drug takers are left to fend for themselves and make sense of confusions caused that shouldn't have been left with them.

5mg Folic acid tablets can be purchased over the counter.

Take care please, it's not a huge problem but I remember too well being left to sort similar over the years so not happy to see you have this.xx

[DPJ66 in reply to catno1]

Thank you, I do feel rather left to find out myself. I was diagnosed in 2004 and have been ok until recently. Azathioprine didn’t work unfortunately and now Methotrexate is my next option. Thank you again for taking the time to share your experience. Take care x

[catno1 in reply to DPJ66]

I was ignored for so many years with regard to rheumatoid arthritis that mine became both advanced osteoarthritis and advanced osteoporosis. Diagnosed in 2005. It took my Rheumo until 2016 to listen. I have a feeling you may understand my frustration with the way care/medication is dished out.

Sorry if I sound harsh, cannot stand reading how others get ignored now as though we are making a fuss.

Keep strong, x

[DPJ66 in reply to catno1]

I agree with you. You don’t sound harsh, unfortunately it’s a reality x

[miccika1]

Interesting. My rheumatoid jist has me on 1mg of folic acid each day. He never mentioned not taking it the day i take methotrexate

[Sekka]

Hi there! I take Methotrexate on Monday evening. I don't take Folic on that day or the day after. I take one every other day of the week. My rheumatologist said "Methotrexate Monday and no folic the day OF or the day AFTER...."

I hope this helps you.

Take care 😊

[HazelW]

I take folic acid every day except the day that I take the metho - as per my rheumatologist's instructions.

[HighMaintenance]

Definitely take folic acid the day(s) following methotrexate. I was really concerned about starting methotrexate but have been pleasantly surprised. The side effects are fairly minimal and eased after a few weeks. They do reappear with dose increases for a couple of weeks but it seems to settle. Good luck! Some people do react adversely but for many it is a tolerable and life changing drug 😊 x

[DPJ66 in reply to HighMaintenance]

Thank you, that’s so reassuring xx

[leeniebeanie726]

I had to take folic acid every day. For taking Methotrexate once a week. Make sure you Rheumatologist tests your blood at least every 3 months. Methotrexate can cause high liver enzymes. I’m going through it right now. My Rheumatologist took me off Methotrexate six months ago, because of high liver enzymes. It’s also effecting my pancreas. My Rheumatologist advised my to see my Gastroenterologist about the liver enzymes being so high . But it can also be a fatty liver. Needless to say my Gastroenterologist prescribed this horrible medication called Creon . It helps my liver, and pancreas produce digestive enzymes. It’s 8 capsules per day 2 at a time with food, yogurt, or applesauce, because it can irritate the stomach 😏. I hate taking it , because of how it makes me feel, but I don’t want problems with my liver or pancreas. Ever since my Rheumatologist took me off Methotrexate. I feel the difference as far as pain goes with my Lupus. Unfortunately though, he can’t put me back on it .

[DPJ66 in reply to leeniebeanie726]

Thank you for sharing your experience. Hope you feel better soon xx

[leeniebeanie726]

You as well . Like I said be sure your Dr does blood work every 3 months to monitor your liver

[DPJ66 in reply to leeniebeanie726]

Thank you, he’s given me the blood forms already. Fingers crossed it works xx

[mainlyconfused]

I take it every day except the day I take the methotrexate.

[Nasturtion]

I haven't got lupus,I take methotrexate for psoriatic arthritis and psoriasis,15mg by self injection as I couldnt tolerate the nausea that the tablets gave me. I was told to take the meth on a monday,m for mondays methotrexate,f for folic acid on a friday. However my mouth was getting really sore and blood test said I was low on folic acid so I now take folic acid every day but monday. Mouth is so much better . It's a brilliant drug.

[DPJ66]

Thank you for sharing your experience - much appreciated x

[tdbsnoball]

Ive taken folic acid nd i h8 it cuz it made me have a metal taste in my mouth so i quit taking it nd it also didnt help me at all! I take sentraline for my anxiety medication. But im good on thyroid rite now. I hve lupus also.

[Barbara17]

Hello. I’m a bit late to the party but just wanted to say my experience is similar to others in that it took time to reach where I am now. I too have SCLE, diagnosed in 2015 after several years of odd things going on and then a huge flare which left me covered in lesions from head to toe. At first it was controlled by hydroxychloroquine only but for the last two years I’ve have to add other medication into the mix. I started on oral methotrexate in February this year but had to stop it after a few months due to adverse side effects of nausea and generally feeling ill. Once things had settled down I started on methotrexate by injection, currently on 15mgs but about to be increased to 20mgs as all my blood results are good. In addition I take folic acid six days a week and 10mg of prednisolone daily. My medication ( and scle) is very similar to Krazycat and , like her, I’m trying to reduce prednisolone. It’s really just a balancing act trying to find out what works for you and what you can tolerate. I will say my skin is much, much better now. Unfortunately my face was affected and that was hard to live with but things are greatly improved and now it’s not so noticeable.

So, to sum up, give methotrexate a try and see if it works for you.

And keep in touch on this site which is a wonderful help and support and full of the most lovely people.

Good luck 😃🤞

[DPJ66 in reply to Barbara17]

Thank you so much for sharing your experience. I’m glad it’s helped you. I’m going to take my first dose tomorrow and hopefully it will settle things for me too xx

[Princerogers777]

I take and have been for 15 yrs 20 mg weekly and 1mg of folic acid a day it goes with the metho cuz metho could deplete folic acid

[TEDDYM]

I take folic acid, every day except on the day I take the methotrexate. x

[Carolmac]

You take folic acid every day apart from on the day you are taking your methotrexate.

[LSurtees]

Hi there, I take folic acid every day apart from the day I have my methotrexate injection

[kyliexc]

I take 20mg MTX once a week, and 10mg folic acid once a week. Started in 2017 without any problems. My doctors advised Methotrexate Mondays and Folic acid Fridays to make it easier to remember. 😅

Tried reducing to 15mg MTX last year and my bloods started getting worse despite no physical symptoms so they put me back on my 20mg.

[DPJ66 in reply to kyliexc]

Thank you for sharing. I took my first dose of methotrexate yesterday and was going to take the folic acid tomorrow. You are on exactly double mine

[1sam]

Hi. I would start with rheumatology advice on the dosage, anyway it can be changed based on how you respond to it.

I started with lower dosage, now I’m taking 4mg daily, non stop, and 12.5mg of methotrexate weekly (2 days).

The days I take MTX, folic acid helps with the nausea, but that is my personal experience, we are all different.

Wishing you well!

Samantha

[Mariposa_65]

Hi,

I used to take methotrexate and always taken folic acid 2 days after.