Methotrexate : Hi all Hope you are all well? I am... - LUPUS UK

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Methotrexate

LSurtees profile image
12 Replies

Hi all

Hope you are all well?

I am due to start Methotrexate in the morning and wondered when you all take it to reduce the side effects?

Any advice is greatly appreciated.

Thank you in advance.

Linds x

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LSurtees profile image
LSurtees
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12 Replies
AnnNY profile image
AnnNY

I took it before I went to bed. That way you can sleep through the side effects. You may wake up feeling queasy. Having good ginger ale, ginger candies, ginger tea or ginger capsules can be helpful, as is getting some toast or something like that into your stomach ASAP.

Also, a lot of people take it on Friday night, so they recover over the weekend and be ready for work on Monday. Of course, if you are busier on the weekend, you can take it on Sunday night. That's what I used to do.

It does take some weeks to work. Don't be too alarmed if you don't feel a whole lot better for a while. Also, the side effects tend to get better.

Hope it works for you.

LSurtees profile image
LSurtees in reply to AnnNY

Thank you AnnNY

I have extreme insomnia and don't want to lose the sleep I actually do get feeling sick.

I am thinking about taking it in a morn after a good breakfast?

It was my prof who told me to take it on a Mon.

AnnNY profile image
AnnNY in reply to LSurtees

I used what other people said in forums. My rheumatologist really didn't give me directions. If your prof who told you to take it on Monday morning, go ahead. But if it doesn't work out for you, perhaps you can try another way.

By the way, the reason why I quit taking it was because of the fatigue I had with it. I don't remember if it helped my sleep, but I was really dragging on it.

I did just find out I had a genetic problem, which isn't uncommon, that I don't process folic acid well. I guess methotrexate reduces folic acid, which is why we often take folic acid with it. I think I may have gotten way out of whack because of this genetic problem.

1sam profile image
1sam

Folic acid helps... but not the very same day, ask your Dr/prof. Taking the pills before bed helps too.

Your body gets used to it, the first 5 months I took it were rough but now (1.5yrs) I only get mild nausea or feel dizzy if I'm not sleeping enough. Good luck! :)

misty14 profile image
misty14

Good luck lsurtees for starting methotrexate. Hope it helps you. Keep us posted. X

farmerfeste profile image
farmerfeste

Methotrexate is taken to suppress immune system to help slowdown lupus attacking the

Body's cells it is taken once a week with folic acid taken on the days you don't take methotrexate regular blood tests should be done to monitor well being.

JenniferW profile image
JenniferW

Hi Linds

I started out taking it with (small) breakfast and found it often caused quite painful wind. I changed to having it in the evening with my main meal of the day and that improved matters.

Recently I started taking Acidophilus, which is various forms of lactobacillus available from Holland and Barrett (and no doubt other health food shops). I had been having problems with my stomach for several months following six weeks of naproxen during a bad flare up and then a course of antibiotics. I actually found that my stomach felt better than it had done since I started taking methotrexate three years ago. My stomach no longer feels rough in the morning. I tried this on the recommendation of a lady who wrote a book about living with rheumatoid arthritis, unfortunately I can't remember her name.

I asked the rheumatology consultant at Addenbrookes about it and she had no problem with me taking it

I was told to take it Monday so that if you have side effects there is a fully staffed rheumatology department to help you.

Regards

Jenny

LSurtees profile image
LSurtees in reply to JenniferW

Hi Jenny

That is really helpful thank you.

I have decided to take tonight after my main meal so fingers crossed.

Yes that makes sense why he told me to take it today.

Thank you

Bacardibabe76 profile image
Bacardibabe76

Hi

I take it on a Friday evening. I used to take my folic acid on the Saturday but I still found I was feeling a little crappy. So I changed it to taking the folic acid on the Thursday instead. That makes all the difference and if I have the odd occasion and I'm still feeling crappy on the Saturday I take another.

Good luck

L x

Phyll profile image
Phyll

Please be careful with methotrexate. Get your lungs checked. The rheumatology people didn't check mine, it turned out I had RA related pulmonary fibrosis which is exacerbated by methotrexate. I'd been taking it for 5 years. Big mistake.

LSurtees profile image
LSurtees in reply to Phyll

Thank you. It does worry me that I have being diagnosed with fluid on my lungs and still suffering with shortness of breath and tightness in my chest but they don't seem concerned about this.

Phyll profile image
Phyll in reply to LSurtees

I know it's difficult, but maybe you should keep on at them until they listen to your worries and act on them.

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