Newly diagnosed, wanted to say hi: Hi everyone, I'm... - NRAS

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Newly diagnosed, wanted to say hi

Abycat
Abycat
35 Replies

Hi everyone, I'm new here. Newly diagnosed with RA. Started Methotrexate last night and feeling nauseous today. Any tips/advice would be very welcome as feeling very down, probably feeling sorry for myself! I did tell myself I would be positive but its easier said than done.

Thanks

35 Replies
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helixhelix

First off, you’re allowed to feel sorry for yourself. But only for a little bit.....

Being diagnosed with RA is not nice news, and you need to give yourself time to adjust.

I find drinking lots of water, and not eating too much, the day I take MTX helps with the nausea. Ginger tea is also soothing. But generally the worst of the nausea wears off over time - I only feel queasy for an hour or so.

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Abycat
Abycat
in reply to helixhelix

Thank you helixhelix for your kind reply. I think I will try ginger tea. I have been drinking as much as I can throughout the day and managed a little home made soup. Now I am so tired I just want to go to bed!

I am hoping that I won't suffer from nausea for too long, I think its stepping into the unknown which is scary.

Hope you are having a good day.

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poemsgalore1
poemsgalore1
in reply to Abycat

I'm assuming you take Folic Acid. Some people only take one or two either the days after MTX day but others (me included) take one every day except for MTX day. Some feel that taking them in the evening means they can sleep through the nasty stuff. As suggested, you might feel better on injections.

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Abycat
Abycat
in reply to poemsgalore1

Hi poemsgalore1. Yes I'm taking folic acid once per week. I will ask if it can be increased. And yes will definitely enquire re injections. I did take the MTX before bed but I woke up in the early hours feeling nauseous. It's early days yet and I will stick with it! Thank you for your support.

Best wishes

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Deeb2908

I have it bad but many have said work through it or ask if it gets bad to get injections. I am now moving to injections after trying different ways of taking the pills working with the nurse. Don't give up on MTX I am only week 14 so still waiting for things to settle but just be open and honest with the nurse and call them if really bad for advice etc.

And yes we all have days feeling emotional I had a good cry yesterday but ok today even with the MTX hangover!

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Abycat
Abycat
in reply to Deeb2908

Hi, thank you for your reply and encouragement, yes MTX hangover! I got that! I will stick with it, its early days.

I do hope the injections work for, fingers crossed. I too will ask about them if this nausea gets too much to bear.

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Deeb2908
Deeb2908
in reply to Abycat

Just keeping asking questions and write things down as brain fog makes you forget a lot of stuff, if you get this too! Also helps at appointments that you dont sound like a ranting hurricane trying to get all your words out of everything you have going on if you have it bad! Keeps you calm and steady.

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Abycat
Abycat
in reply to Deeb2908

Hi again, good advice re list of questions, thank you for that.

I'm thinking of starting a new post to find out if there is anyone without a spleen and how they are finding things. I had mine removed many years ago and take penicillin daily. The pharmacist told me I should not be taking MTX alongside penicillin! My consultant is aware and stated they would need to keep a closer eye on me as my immune system is already compromised.

All the best to you.

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J1707

Hello Abycat and welcome. Sorry you have had to join us. You will get so much help and understanding on here. Feeling sorry for yourself is aloud and staying positive is good but this BLOODY disease likes to throw a curveball. I was diagnosed over 3 years ago did ok until last year when things went haywire and staying positive doesn’t always work and then I get stubborn and start laughing at myself and I’m back on track . There will be a lot of ups and downs. Don’t hesitate to ask any questions. Your not on your own and things will get better.

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Abycat
Abycat
in reply to J1707

Thank you J1707 for replying. So pleased to hear you are back on track. It's a horrible disease, and I am just at the start of a long journey and hopefully I will get there!

I so appreciate the kind words and support, at least I am not alone.

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Ali_H

Hi,

One thing I’ve found helps is splitting my MTX into two doses in the set day so I take half at breakfast and half at tea time - be aware that it MUST be taken within the same day. Ginger helps me and plain yoghurt.

Drinking loads of water the day before and on MTX day. An early night on MTX day helps me as well.

All the best

Ali

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Abycat
Abycat
in reply to Ali_H

Hi Ali, thank you for your reply, my rheumy nurse told me not to split the dose as I did ask that question. I am going to get ginger tea to try and I did drink as much as I could, but didn't think of drinking lots the day before, so will try that. Interesting that yoghurt helps you, something for me to try!

It's much appreciated that that you shared your tips,. I hope all is well with you.

Thanks

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Floralqueens

Hi. Sorry to hear that you’re feeling nauseous. I am on Methotrexate injections, with Folic acid on 5 days, I too suffer with nauseous, the last two weeks have been particularly tough. Every morning I have a little fresh ginger (finely chopped) on my fruit for breakfast, I drink Ginger Beer too, as needed!! The ginger does help but it’s not a magic cure. You’ll find your own way of working through the nausea. Stick with the MTX, as being able to manage my RA and to get on with my life as best I can is worth the odd little hiccup now and again. Good Luck 😉

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Abycat
Abycat
in reply to Floralqueens

Hi Floralqueens, sorry to hear you have had a tough time just lately. I love ginger beer and didn't think of that! Wonderful idea, thank you. I also will try fresh ginger, I do have some.

I hope I find my own way of coping with the nausea. I'm currently only taking folic acid once a week, I suppose I could ask to increase it if I suffer too much. I will stick with MTX, for a while at least! I've got to give it a chance and its early days yet.

All the best to you.

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Floralqueens
Floralqueens
in reply to Abycat

💖🤗

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jellyp

I know you might not think so now but it will get easier got RA when I was 17 I am now 48 so you do learn to cope.

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Abycat
Abycat
in reply to jellyp

Hi jelly. So sorry to hear you have had RA for a long time. I'm sure things will get easier for me, I'm just at the beginning of this journey. I so appreciate all the replies and kind words.

Thanks

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Zip1

Hi, I have discovered that some makes of MTX make me feel more nauseous than others, unfortunately it is proving hard to get the make that is suiting me but maybe worth talking to your pharmacist about. The folic acid is very important, if I forget I know about it! To deal with the nausea at the time I find sucking a mint helps. Also I agree with everyone else's comments . Good luck I hope you find the symptoms ease off soon.

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Reving

Hello Abycat I have not managed to settle on MTX tablets and started the injections last week. I go today to do the first on myself. I am hopeful as I seemed to be better last week than the tablets. Hold on in there.

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Abycat
Abycat
in reply to Reving

Hi Reving. That's great you are going to try injections yourself, i can imagine you will be feeling anxious but I'm sure you will manage, especially as you are doing better with injections. Good luck and hope you will let me know how you get on. I will ask to go down that route if I just can't cope with tablets.

Best wishes

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Siri84

I have been taking methotrexate for the past 17 years- was on tablets until last March when I moved to injections.

After a lot of trial and error, the below process works for me .

1. Taking medication only on the weekend(Saturday ) and resting on Sunday

2. Eating lots of carbs (I am an Indian - so rice with veggies and yoghurt) before the tablets

3. Taking it at night so that I can sleep through it

4. Lots of water, rest and some light food on Sunday

All the above steps got me through mechanical engineering , masters abroad and help me cope with a marriage and a full time job now . You are not alone and it gets better over time , I promise.

If not the disease, atleast the way we handle it !

Siri

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AgedCrone
AgedCrone
in reply to Siri84

Great answer Siri84....agree with you 100%.

Don’t let theRA win...it’s our life ....we must be in control...not

the dratted disease!

AC

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Abycat
Abycat
in reply to Siri84

Hello Siri84, thank you for your great advice and I'm full of admiration on what you have achieved. There is a life to live even though we have this disease . I'm not going to let it get me down.

I wish you all the best.

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stbernhard

A few weeks after I was diagnosed, my consultant said "You're allowed to cry, to hurt and feel miserable, but I will never allow you feel sorry for yourself. If you are not willing to help yourself then what I can do for you is very little ". That shook me a bit, but it got me thinking and made me determined to become the boss over RA. I would not let it rule my life. So I cried, I hurt and I felt miserable, but I also began to become more positive. Taking small steps. One day at a time and soon living with RA was OK. I was able to take control. We are a lot stronger than we think. We just have to believe in our strength. I wish you all the very best and stay in touch, we are here for you and you are allowed to air all your woes without fear.

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Abycat
Abycat
in reply to stbernhard

Hello stebernhard. Thank you for sharing what your consultant said to you. Very wise words , what a wonderful consultant you have.

I must just take one day at a time and stop worrying about tomorrow. I can and will do this, if I only suffer nausea out of all the listed side effects, then I will be very lucky. I just hope the meds do the job, and it will be worth it. I know I can ask to increase the folic acid and also try injecting, so still options to overcome the difficulties!

Wishing you all the best.

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AgedCrone

As you say feeling sick & tired a few hours after taking Mtx is quite probably relief after the anxiety of anticipating taking it.

Put it out I your mind now, & do remember most of the people who have a bad experience with any drug only write here when it’s bad.....we don’t often see a post saying “Hurrah my drug is at last working for me.”

As others have said - keep well hydrated & try any of the advised nausea remedies..,,I was one of the lucky ones & popped my MTX like Smarties right from the start . The only strange thing I had was a metallic taste in my mouth .....which a mint sweet solved, Not a big price to pay.

I took the MTX after dinner ...on the very non scientific idea that if I felt nauseous I’d be asleep & wouldn’t know about it...but it worked for me.

Also...if you are not taking folic acid every day except MTX day do you ask your rheumy nurse if you can do that .....because I think most people find that is most helpful if the nausea continues. I took 6 per week from Day 1.

You do need to keep on with most Dmards a good 6/12 weeks before even thinking of throwing in the towel....I do know that is hard....& don’t do what I did.....I took SSZ as my first drug for 12 weeks “as instructed “ & was physically sick every day....that was stupid...but taught me a lesson....if you only feel slighted nauseous dig deep & keep trying..,.but more serious than that ...contact your rheumy nurse for advice.

Good Luck...if MTX works for you it us a great bonus.

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Abycat
Abycat
in reply to AgedCrone

Hello Agedcrone, interesting name and am sure it's not true! Many thanks for your support and advice, all very valuable to me.

I most definitely will speak to rheumy nurse re upping folic acid if the nausea continues. But I am now armed with lots of valuable tips and advice and hopefully I will see the light at the end of the tunnel!

I do so hope the MTX works for me, it's just a pity that it could take quite a while to find out. I am determined to keep going with it. I often wonder why consultants differ re the dose of folic acid, must be down to cost? I would have been happier with 6 days of it!

Best wishes and thank you again.

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AgedCrone
AgedCrone
in reply to Abycat

No it’s cheap as chips......it seems to be one thing they can pick a number then up/down it at will without doing any harm as they promise in the Hippocratic oath “First- do no harm........”

If they first prescribe 1/2 a day & it doesn’t work, then they push it up to 4 days a week and it works the patient is so grateful they don’t bother him anymore!

I’m joking of course...but there doesn’t seem any rhyme or reason for the differing doses prescribed.

Speak to your nurse & she will put you right....and try not to overthink it!

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Abycat
Abycat
in reply to AgedCrone

Hi again, will ask for it to be increased,

Regards

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Eden1

Hi - I am also recently diagnosed (Nov ‘19) and I too felt really down and scared for the first couple weeks. I was so down and anxious I even managed to lose over a stone in 3 weeks as I couldn’t eat properly! And I previously was at Slimming World for months to lose that much! But whilst I’m still somewhat anxious as to what is ahead of me I’m more positive now. I’m starting week 9 of methotrexate (15mg) and whilst I don’t feel sick with it I’m not sure that it is fully effective just yet as I still have problems with various joints. But consultant had said it would take at least up to 12 weeks maybe longer and that he would increase dosage or add something else if not fully effective. I’m seeing consultant next week so hopefully he will do that. I also had a hip replacement in September so mobility wasn’t great post op (or my mood🙁)for a while but I’m trying to keep active now with walking etc. Also trying as best I can to eat a good diet plus I take various supplements- not sure if they work but I will continue for now. Try to keep positive people around you and I have discovered since I was diagnosed that there are lots of people with RA and on methotrexate or other drugs and doing well. Even someone I worked with closely told me recently she has been on methotrexate for last 5 years but doesn’t necessarily tell people - but she is doing really well. So good luck!

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Abycat
Abycat
in reply to Eden1

Hi Eden1, so pleased to hear you are more positive as not long diagnosed and you are not suffering from nausea. I too was diagnosed in November but I only agreed to start MTX this week. Rheumy nurse decreased my starting dose to try and help me overcome the fear I had.

Good luck with your next appointment. I hope it goes well. Yes it can take up to 12 weeks for MTX to kick in, as i have been advised, such a shame it can take that long.

Hope all is going well with your new hip, good diet and excercise sounds like a good plan.

I too am taking a supplement, one for my hair as I am terrified of thinning hair! It's all so scary at the moment but I will get there. That is really encouraging knowing your work colleague has been on the medication and she is doing really well.

Hope you can let me know how your appointment goes.

Best wishes.

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Mmrr

Abycat, as many others have said staying well hydrated is really important, but for me carbohydrates did the trick. Toast and green tea, a plate of porridge, bolied/baked potatoe and a tiny bit butter really helped the nausea. Oh and some comfort food like a boiled egg and toast. I found keeping it simple and not letting your tummy get empty or the nausea returns.

Good luck.

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Abycat
Abycat
in reply to Mmrr

Hi Mmrr, many thanks for advising what works for you. I do keep hydrated, it does help. I'm finding that light meals seem to be best, although I don't feel like eating. I have received many suggestions which is very much appreciated.

Best wishes to you

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Agoodlife
Agoodlife
in reply to Abycat

The key I have personally found that you need to be thirsty for drinking more to be hydrated otherwise it makes no sense for your body(!) You need to look further and ask yourself why am I not thirsty if I am dehydrated?What would make me thirsty and so on THIS has shown me the right direction to feel better.

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Abycat
Abycat
in reply to Agoodlife

Hi Agoodlife. Thanks for your reply. Something to think about!

Regards

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