Advice needed please

[weathervane]

My son is taking methotrexate on a Friday and folic acid on a Sunday, i was away for the weekend and guess what , he forgot to take it 🙄. I told him to take it today and then folic acid on Tuesday , have I done the right thing??? Will he have to change his day now to Sunday or can he take it again this Friday as norma as this suits him . Im a bit panicky now that ive given him bad advice ☹️☹️

[PMRpro]

I think just one day or so late is fine - but any later and they say to wait until the next time if you really want to stick to a particular day.

I was told to take my folic acid the next day - but in fact I found I needed more than just a single dose. Not that the folic acid made any difference to my hair falling out! Is he doing fine with it?

[weathervane in reply to PMRpro]

Thanks for replying so quickly! Initially he had cold like symptoms the day after taking the medication but has settled down now and dermatology is pleased with how he is doing , he get very tired but that is probably the lupus rather than the drugs ( hes also on 400mg plaquenil ) . Thanks for advice, I will remind him next Friday to take his methotrexate , he is sooo forgetful !

[GloomyEeyore in reply to weathervane]

Can your son set up an alert on his phone? If he did this as a weekly event on a Friday for the Methotrexate and a Sunday for the Folic acid then he would get a reminder.

[weathervane in reply to GloomyEeyore]

Oooh Gloomy , i have it on my phone , yes I will get him to put it on his too . I thought about phoning him from the airport but it went out of my head . I was getting texts from my sisters, we were meeting up for a get together to celebrate my oldest sisters 70th .

[PMRpro in reply to weathervane]

Yes - I was about to say the same! I have a daily alarm for one tablet to be taken in the afternoon - without it I forget it and it matters!

[weathervane in reply to PMRpro]

I have alert set for myself and for my son , but when i was away for weekend I forgot to remind him , bad mum !!!!

[PMRpro in reply to weathervane]

Bad mum my foot! HOW old is he????????????????

[weathervane in reply to PMRpro]

Hes no child, hes 25 !! He’s still at home and he is suffering badly at the moment with fatigue and brain fog so i do have to keep remembering him of things , which he hates , but he does need to manage things himself a bit better.

[PMRpro in reply to weathervane]

Exactly! Otherwise he'll turn into the usual form of male patient...

[weathervane in reply to PMRpro]

I have 4 in my house none of them are good patients 🙄

[PMRpro in reply to weathervane]

Down to you?????? Do you run around after them? Mind you - my daughters have problems with compliance too...

[weathervane in reply to PMRpro]

They are really not that bad ! When ive been unwell they have all been great , however, when they are unwell they feel so sorry for themselves and they do love to be nursed 😷

[Loopyloo43 in reply to PMRpro]

Hi am sure it will be fine sometimes when I fall ill my methotrexate dae will change because of infection and have to give space to get better so it works efficiently my hair has been falling out a lot over a period of a couple of years and I was really worried about how much then about six months ago it just stopped I really have no idea as to why but for me I am glad. The only difference in my meds is they upped my methotrexate to 15mg and I have it in the injection which seems to work better! I hope this helps ❤️

[weathervane in reply to Loopyloo43]

Thanks Loopyloo , he is not back with dermatology until January and he hasn’t been given a rheumy nurse in rheumatology so I thought for now this was a great place to get advice as so many are on methotrexate. He has only been on this for a short while but thank goodness it is agreeing with him . He has lupus profundus and has a painful shoulder because of the tissue loss round the joints , does methotrexate also help the pain or does it just help control the condition. ?

[Gcart]

I am no expert , but please check difference between folic acid and folate .

I am thyroid patient but seaside susie is a mine

of information

Best wishes

[weathervane in reply to Gcart]

It is folic acid he has to take not folate .

[Loopyloo43]

Hi am not sure if your son takes tablet form or epi pen which I do apparently and I feel they it works more effectively than the tablets I found I didn’t absorb them very well hence being put in the pens! Tone fair I haven’t found it made much difference in the change of days as long as you get back on track so to speak 🙂🙂

[weathervane in reply to Loopyloo43]

Thanks Loopy , he takes tablets which are agreeing with him at the moment, i know from reading other post that this can change. Hes terrible about remembering to take his meds , i will get him to put an alarm on his own phone as he needs to take more control over it himself .

[SLEepyhead123]

When I was on methotrexate I took folic acid everyday apart from injection day. Next appointment I would ask if just once a week is enough for folic acid? Good luck. 🍀

[weathervane in reply to SLEepyhead123]

He was told at dermatology to take it once a week and he is feeling well he is on 10mg tablet. If there was any change in his health it could be changed . I hope you are keeping well 🌸

[SLEepyhead123]

I was injecting 20mgs so perhaps the higher the dose the more you need. Mine was prescribed for systemic lupus by my rheumatologist but I also have RA. I'm full of cold at the moment as as no immunity have GPs appointment Thursday which was originally for flu vaccine and rheumatologist on Friday so am sure I will be sorted out.

Hope your son is doing ok on his methotrexate. 💜💜💜

[weathervane]

I know the feeling unfortunately due to rituximab, i was dosed ilast week , I got zinc as apparently 75mg a day in first 24 hours of a cold can shorten it and I really think it worked . I hope you feel better soon, keep warm xx