Today is M day! Scared witless: Well the day has... - NRAS

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Today is M day! Scared witless

Someonesmother profile image
25 Replies

Well the day has finally arrived after resisting it for two years, my liver has recovered enough to take my first MTX tablet tonight. I am so not looking forward to losing every weekend to feeling like crap I gotta say.

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Someonesmother profile image
Someonesmother
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25 Replies
Jacki08 profile image
Jacki08

Hi--- I am starting MTX and HYDROX next week and although very apprehensive I am hoping that, given time, I will feel better at weekends than I have done for the past few years. ( just hope I'm not eating my words next weekend) !!!! Good luck xx

Someonesmother profile image
Someonesmother in reply to Jacki08

I have been on hydroxy for about 12 months. Only side effect IO got from that was headaches so they altered the dosage and I have been good on it since. i have multiple chemical allergies so am always very cautious when starting new meds and from all I have heard about this including my sisters experience I am thinking I will cop the lot.

Good luck next weekend and I hope you go Ok.

cathie profile image
cathie

Be brave! It made me well for nearly 10 years. Seems to have an impact on OA too. I hope you do well. And rest afterwards.

Someonesmother profile image
Someonesmother in reply to cathie

I have planned to write off the weekend. Just hope I am better by Monday for work. If it lingers I don't think I will stick with it as I cannot do my job feeling like death.

Ali_H profile image
Ali_H

Hi SOM,

It may not be ( and I sincerely hope not) as bad as you fear. I've been on MTX for 6 weeks (10mg) and no side effects... May be due to low dose or may be because I eat porridge with fresh ginger and a sprinkling of slippery elm 30-40 mins before taking my med to line and protect my stomach and then I wash it down with a double strength peppermint tea... Or it may be because I'm one of the lucky ones who get few side effects!!!

I hope it goes well

Ali

Someonesmother profile image
Someonesmother in reply to Ali_H

Thanks. I unfortunately get most side effects with drugs and usually the rare to unusual ones which is why I have been so resistant to take this. I have just had dinner so I will wait a little until all my other meds have gone down and then take the dreaded things.

Ali_H profile image
Ali_H

All my rickety joints are crossed for you.

I take it from the photo and the fact that you've just had dinner means you're DownUnder... I did a student exchange to Ballarat years ago, fab country! I hope you've got some enjoyable but 'light' activities lined up to take your mind off the negatives.

All the best

Ali

Someonesmother profile image
Someonesmother in reply to Ali_H

Thanks Ali_H I have everything crossed too. Yes I am in Oz but I have never been to Ballarat. i am just planning on trying to get over any side effects not much planned at all. Hope you have a good weekend.

cathie profile image
cathie

I was told to take it at night. Do you have folic acid to help with side effects?

Someonesmother profile image
Someonesmother in reply to cathie

Hi Cathie, yes I have just had dinner so I am waiting for my other meds to settle before I take it as I don't want to chuck them up as some are heart meds. I am to take folic acid every day except MTX day.

cathie profile image
cathie

You must be a long way away as I've just had breakfast ( in Scotland). If you can't tolerate those nasty pills could you inject? It's supposed to be easier to tolerate. Good luck

Someonesmother profile image
Someonesmother in reply to cathie

I am a long way away. I am in Oz and it is Friday night here. That option wasn't offered but I did mention to my rheumy that I already have reflux and if these make it worse I won't continue them.

nomoreheels profile image
nomoreheels

I hope you have good results on MTX, I have this last 4 years. Even better since changing to injections so if you're prone to problems with your other meds I'd ask if you can change to them you may well find it more tolerable. I took my 15mg dose as 2 tablets with each meal (breakfast, lunch & dinner) & found it worked well for me but you'll probably find what works best for you.

Good luck & hope it gives you no further cause for concern & you have a nice weekend. Love the pic!

I was reasonably lucky, had no side effects to speak of until the dose was raised to 20mg and then I only had them on the actual night I took them. Then I went on to injections and had no problems at all. I took a folic acid every day except for Methotrexate day.

Someonesmother profile image
Someonesmother in reply to

Thanks peomsgalore. I did get very tired and have had a continuous headache since the early hours of Saturday morning. Not sure I will continue if this lasts as I can't work and feel like this all the time. I take folic acid 6 days a week.

julie_warwick profile image
julie_warwick

hopefully you will be fine , mtx didn't work for me , but it didn't seem to harm me either , I just used to feel tired and a bit off colour the next day , folic acid was prescribed too and that helped. this drug is a miracle for lots of people , hopefully you will be one of them and it is worth it x

Someonesmother profile image
Someonesmother in reply to julie_warwick

Thanks Julie, yes I do feel off and it is Sunday now, I have also had a headache that won't shift since the early hours of Sat morning. Not sure I will like it or continue as I work full time and I couldn't cope in my job if I have headaches like this con tinuously

julie_warwick profile image
julie_warwick

poor you , hope it eases off. from what I understand your body can get used to it if you persevere , hope it works for you x

Someonesmother profile image
Someonesmother

Me too, the headache that won't go away is a bit debilitating. Will have to see how it pans out at work this week, but if this is the side effect I get, I get I won't be continuing.

emiliekofi profile image
emiliekofi in reply to Someonesmother

Hi there. I have been on 15 mg Mtx for 8 weeks now along with folic acid 6 days, mixed with my usual drug sulfasalazine. I started off fine just felt a little sick, but after 2/3 weeks this was replaced with terrible headaches and I have had them ever since, they seem to last all day and for the whole week. I like you work and cannot function properly with a raging headache. I am going to give it a few more weeks in the hope they wear off if they don't I will consider coming off them, which is such a shame I had such high hopes this would be the drug that helped with the pain from inflamed joints. Hope you get on ok and the weeks go on and the head pain subsides.

Someonesmother profile image
Someonesmother in reply to emiliekofi

Thanks Emilikofi I seem to have just started with the headaches which worries me for what will happen as it builds up in my body. So not looking forward to it. I told my rheumy if it impacts on my quality of life and reduces it even more I will not take it. I hope it subsides for you and that it works but as you say it is way to awful to try and work with constant headache

Juliette64 profile image
Juliette64

Sorry that you will be feeling poorly after the medication. However, I feel that we are the CEO's of our own bodies. Why not ask your doctor for something different. It will be your liver or the RA. I would try something else.

Good luck and I do hope you continue to improve.

Someonesmother profile image
Someonesmother in reply to Juliette64

So far so good with only headaches and occasional nausea. I am up to 15mg but it hasn't made any impact as yet. So far bloods are good so my liver seems to be coping. I have been on plaquenil for 12 months pr so and tried luefenomide but got peripheral nueropathy so had to quite that. So this is the next in line. I guess I will have to just see how I go with this.

Juliette64 profile image
Juliette64 in reply to Someonesmother

I have been on plaquinil for at least 10 years. I had to discontinue sulfasalazine., as it made me ill. The plaquinil is 200mg 2xper day. I cannot tell if it works or not. I'm still in pain daily . I only hope it hs slowed the progression of this RD.

I hope you will continue to feel better.

"HERE'S TO GOOD HEALTH"

Someonesmother profile image
Someonesmother in reply to Juliette64

Hi Juliette 64 I have failed the MTX and had to stop it last week, still on Plaq and prednisone along with lots of heart meds ect. hahahah I am like you and have no idea if it is working as I feel no different. I feel like death warmed up at the moment as I have developed costochrinditis ti top off a lovely adverse reaction to MTX. I hope you too can find something that works.

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