Does anyone have a bad day the day before methotr... - LUPUS UK

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Does anyone have a bad day the day before methotrexate is due??

Sara_A profile image
6 Replies

Hi just wondered if anyone has the same problem I seem to be having??

I take my methotrexate on a Wednesday and always have a rough ish day Thursday and friday with a bit of on and off nausea around mealtimes and loss of appetite therefore.

But I have now noticed that I have the worst day on a Tuesday, the day before my methotrexate is due. I feel totally useless and unable to do pretty much anything at all. I usually end up having to sleep at some point in the day as I'm just so fatigued and drained. I've been suffering with major fatigue again just lately again anyway but wondered if anyone else had this issue the dat before methotrexate day x

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Sara_A
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6 Replies
DJK99 profile image
DJK99

Hi Sara - in nutshell, yes! I take it Weds too. I feel good on the Weds. I guess the metho’s affects are running down by Tuesday? Or it’s all in our head? I don’t know, but today (Tuesday) I woke up feeling even more like I’d not slept/been poisoned/much more in pain allover, bent over for an hour or more on getting up, much worse BAD back spasms and hand and feet joints/tendons all inflamed. And the rest blah blah. Mind you, I did a little gardening on my roof terrace yesterday, sun was shining..but had my hat and (eventually) factor 50 on. Might just be that.. I think I worked too long as was kinda exhausted afterwards, but then think the deterioration is cyclical each week to a degree. Whatever, we carry on 🤷‍♀️💪🏻. Take care, keep mega hydrated, keep safe and hope you feel better again tomorrow x

Sara_A profile image
Sara_A

I managed to drag myself up the stairs to the toilet and then had to stay there told my partner (who has taken voluntary furlough was given it cos of me being high risk on full pay) thank god as our kids are 4yrs and 7yrs and I struggled the 1st month and could have curled up and died I couldn't manage with the fatigue and 2 kids alone full time.

Anyway totally gone off the point, told my partner I was gonna have to sleep I wasnt gonna make it til bedtime otherwise, had 2 hrs sleep have got up (somehow) and now on a chair and feel awful! Just in that I cant manage to do anything I feel so drained I just want to give up and cry!

All I want to do is lay on the floor and sleep and sleep and sleep x

Whippet_lady profile image
Whippet_lady

I'm about to start taking this, not looking forward to it after all the horror stories I've been told - not sure I see the point, tbh, if it's going to make me feel so bad for 3/7 of the week! What sort of life is that?

Anyway, given what you have said, would I be better off taking it on a Tuesday or Wednesday if I want to keep my weekends do-able (in the future, obvs, nothing's do-able atm!)? I was thinking of starting on Monday because of the following two days potentially being ruled out but if the day before is going to be bad as well maybe Tuesday would be better?

Thanks.

Sara_A profile image
Sara_A in reply toWhippet_lady

It's not to say that everyone is going to feel like that, it's not just the meds it's also that I'm struggling with major chronic fatigue too atm, possibly as I'm not able to get out at present and having little exercise as compared to normal.

My disease is just generally rubbish and this is the 3rd drug I've tried and seems the best so far. Believe it or not!! I'm on 10mgs of pred daily too I've been in this constant flare with joint pain and fatigue since having my last child 4 years ago so I don't think I'm an easy one to sort ha ha!

So please don't worry about starting the mtx, it would be better to take it on a day that u maybe dont have much on the following day just incase to see how u feel but u may be totally fine. Is it tablets or injections u are having? Just have to make sure ur folic acid day is a different day I take that Sunday x

Princerogers777 profile image
Princerogers777

I used to yes dont notice much anymore, i also take on wednesdays

Benne09 profile image
Benne09

Hi I had bad side effects with tablets and had really bad side effects for 3 months. Then switched to injections and had no side effects at all (take daily folic apart from methotrexate day). I will say though that I ran out and went without for week and a half and I certainly noticed a huge change in joint stiffness. So I do feel that the drug probably does only stay in our systems for a week give or take few days. That’s based on my experience. Hope you all doing ok xx

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