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Due to start Methotrexate tomorrow - so nervous

16 replies

RumHam · 01/05/2022 16:24

I was due to start last Monday but I came down with a bug after my weekend away. Thankfully not Covid again but I had to put off starting it until tomorrow. I had been feeling ok-ish about it until today and now the nerves are fully kicking in for tomorrow.

I am starting on 7.5mg tablets as well as 5mg folic acid every day except Mondays. I have been taking the folic acid for about 2 weeks now.

One minute I am ok about it and know I need them as I don't want my PsA to get any worse especially as I am only 29 then the next minute I am in denial about even having PsA and don't feel 'ill' enough to need MTX despite the pain and swelling I have. My mind is just all over the place. Sounds silly but I am mostly scared of the vomiting/nausea. I have a lifelong phobia of that. Also worried about hair loss and all the mega scary side effects like liver troubles.

Just looking for a hug or probably what is more needed - a kick up the bum to make sure I don't chicken out from taking the tablets 😂

OP posts:
Lightuptheroom · 01/05/2022 16:27

My mum takes them, not sure of the dose but hers is several tablets once a week. She's much better on them. Yes, they monitor your liver function but the lack o pain and decrease in swelling is well worth it.

MrsPelligrinoPetrichor · 01/05/2022 16:29

If the nausea is unbearable there is a jab version which can help cut down on it.

My dad took it and it was awful and had to find an alternative but a good family friend feels much better on it so you can't tell really untill you try it, the same as any drug.

Good luck 🤞💐

makingmyway10 · 01/05/2022 16:30

Hello. I have been taking it for 12 weeks now. I felt exactly the same as you! I was Pretty sick the first dose like a bad hangover actually the first three times but it gradually got better and now I just feel very tired the next day. I have had no hair loss and am really glad I stuck with it as my Arthritis has improved greatly. I found that taking it before I went to bed helps with the sickness. Hope that helps.

mynameiscalypso · 01/05/2022 16:32

It didn't work for me particularly but my dad has taken it for years without any issue. The annoying thing about PsA treatment is that you have to try the cheap treatments to get onto the good ones. It may work for you - brilliant! - it may not and that's okay because there are lots of other options. For what it's worth, I was on it for about 3 months and never felt sick or had any hair loss (I came off because one of the routine blood tests should some funky liver results - went back to normal almost immediately)

Noimaginationforaun · 01/05/2022 16:33

I was on the injections for years and they changed my life! Please take them! You will hopefully see such a big difference which will make the anxiety worth it!

chillied · 01/05/2022 16:37

I'm on methotrexate, no side effects.

You have to take it for about 3 months before it has full effect so don't expect fireworks

tiggergoesbounce · 01/05/2022 16:52

I take lefunomide for my PsA, i completely understand that feeling of not being ill enough to take it, but then every once on a while, i come off it and the inflamation and discomfort reminds me why i need them.

It is scary especially when you know it is going to be such a long time (as we started so young taking them) but if you hold out hope something may come along that doesn't require regular blood tests to monitor internal organ function then thats the hope.

I was scared but you need what you need, i did/do get a bit of nausea and headaches with mine, but nowhere near the pain when im off them.

Not everyone gets side effects so fingers crossed one of those is you x

OneBigToDoList · 01/05/2022 17:08

Hello, I was 29 when I started taking it too, for RA. I was also worried, it's a lot to take in! Luckily I got on really well with it for 3 years with only one flare-up. The only side effects I experienced were tiredness and a sort of car sick feeling, but I never vomited (I used to take it in the evenings so that the side effects didn't interfere with work and that helped a lot). I also noticed a lot of hair on my hairbrush after brushing so the consultant increased my folic acid slightly until things settled. I'm on different medication now as I'm pregnant, and it's not working anywhere as well as the methotrexate did, so would also echo what a pp said about not feeling 'ill enough' to take it. Good luck with it all, and remember if it's not working for you there are alternatives you can try xx

Noimaginationforaun · 07/05/2022 08:43

Hope the Methotrexate is going well for you!

Sleepeatrepeat · 07/05/2022 08:54

My dd is on 7.5mg of methotrexate weekly and 5mg folic acid weekly. She is only 8 but has been on it for 3 years and has never had any significant side effects.

She has had a couple of incidents of jaundis when she has been poorly but nothing the hospital has ever been concerned about.

It has been game changing.

I get you are frightened and it is a huge step. But honestly, take the risk. If it doesn't help you then you haven't lost anything. But if it helps your situation then you could change your life!

Arglwydd · 24/05/2022 20:59

Hello, just chiming in as i have PsA also. I could have written the same words 10 months ago, mine came on so quickly. It was a very scary time but i wanted to give you some hope… I started on tablets of Metho (18mg then up to 20mg) and now have one 20mg injection Mon eve. Also, i take Leflunomide 10mg daily as the CRP inflammation numbers were not being controlled (this was 20 mg but now lowered as i had jippy bowels) .With all that i have no real side effects other than tiredness and more pain leading up to and straight after the jab, with the hot flushes jab night…joy!

It has been a game changer! At my worst i couldn’t get out of a bath,up stairs or put socks on, never mind picking up two cups of tea! Now my work colleagues are astonished by the change. Yes, it took time but it is possible to lead a relatively normal life and feel better.

I too was all over the place emotionally, as you start to feel better this will improve, i hope you have someone you can talk to and support you.

It is possible in the future to reduce medication once they have your pain/ inflammation under control, this was not conveyed to me at the start. I even re-sized my wedding ring but now the bloody thing falls off as fingers are back!

Anyhow, best of luck, any questions feel free to fire away💐

Bluebellbike · 24/05/2022 21:06

I have been on Methotrexate for around 20 years. Initially on tablets but now on the Metoject pens. I had just Psoriatic Arthritis initially but now have Osteoarthritis in places. I would say it has helped me immensely. .y psoriasis is lots better as well. I have quarterly full blood count and liver profile tests and everything has always been fine. I had a complete knee replacement two weeks ago. Just starting to feel normal again now.

NK346f2849X127d8bca260 · 24/05/2022 21:18

My mother takes 10mg once a week for her RA and has been on them 14 years, never had a problem so far as i am aware.

RumHam · 03/06/2022 14:24

Hi everyone, thanks so much for all your replies. After a few muck ups with my appointments and prescriptions, I finally started my MTX injections 2 days ago under nurse supervision. The jab itself was absolutely painless! All I felt was the suction cup against my skin, I didn't feel the needle at all. My nurse and husband had to tell me the jab was over because I didn't even feel it start!

I wasn't worried about the injection but more so the side effects. 48+ hours on, I haven't really had any side effects other than a bad migraine yesterday but I did feel a bit of a headache coming the day I got the jab so I don't know if it was just bad luck and a normal migraine or the jab made it worse. I will know next week if that is one of the side effects of MTX for me. I haven't had any nausea, diarrhea, dizziness etc that I was worried about.

Its very early days on MTX but so far I am very impressed. I am on 7.5mg for another week and then up to 10mg for a couple of weeks and then 12.5mg for a couple more and 15mg will be my stable dose if all goes well

OP posts:
Frolicinameadow · 05/06/2022 16:53

Hi OP, was searching for methotrexate users and found your post.
mum on MTX about 5 months now. Initially had some nausea but it past very quickly.
I find I get no symptoms when I drink as much water as possible on the day I take my meds. I try take it in the evening so any tiredness doesn’t affect my day.
The medication has done wonders for me, I’m so happy with it. I wish you well x

Notfatundertall · 05/06/2022 17:49

RumHam · 03/06/2022 14:24

Hi everyone, thanks so much for all your replies. After a few muck ups with my appointments and prescriptions, I finally started my MTX injections 2 days ago under nurse supervision. The jab itself was absolutely painless! All I felt was the suction cup against my skin, I didn't feel the needle at all. My nurse and husband had to tell me the jab was over because I didn't even feel it start!

I wasn't worried about the injection but more so the side effects. 48+ hours on, I haven't really had any side effects other than a bad migraine yesterday but I did feel a bit of a headache coming the day I got the jab so I don't know if it was just bad luck and a normal migraine or the jab made it worse. I will know next week if that is one of the side effects of MTX for me. I haven't had any nausea, diarrhea, dizziness etc that I was worried about.

Its very early days on MTX but so far I am very impressed. I am on 7.5mg for another week and then up to 10mg for a couple of weeks and then 12.5mg for a couple more and 15mg will be my stable dose if all goes well

Awww glad it has gone OK so far!

My dd takes tablets and has been fine. The first few weeks she complained of a bit of a headache as I think back but after 3 years she is thriving.

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