Methotrexate - first week: Hello All, so I started with... - NRAS

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Methotrexate - first week

Hello All,

so I started with Methotrexate (7.5 mg) last Friday. The following day I had to stay in bed until very late (12) as the fatigue and hangover feeling were pretty bad..

After that I started having tummy pains and went to the toilet several times until yesterday. Better today! I will perhaps be on a better and lighter diet next time I take it, to make sure my tummy doesn't get too bad.

Oh I also got tongue ulcers straightaway! and still have...

I guess it could be worse...

I wonder if they will increase my dose eventually. xxx

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Hopefully you will adjust to it 👍 sadly I had awful side effects for the 20 weeks I was on it until I couldn't stand it anymore 😟 My NHS rheumy started me on 7.5mg and it was increased to 15mg gradually over the first few weeks. Hope it gets better for you as you go along 🤞

MTX injections may also be a possibility at some point too if you can't get on with the tablets.

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Oh no :( what side-effects did you get? I hope the tummy issues don't last....

yes, I will definitely ask for the injections xx

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I was on methotrexate injections for 5 weeks had to come off as the stomach and bowel problems were so severe. I'm now on sulfasalazine first week very low dose tablets built up to full dose over 4 weeks. No problem so far but also no benefit I live in hope

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This is my third time on Sulf.

Nausea for at least half an hour after each tablet and by the time I was on five a day that was five bouts of nausea, every day, so I checked with my rheumy and gp if it would be a problem taking them all in one go, the idea being I would feel sick just once a day.

They were okay with it.

Two hrs a day for about a week, then it eased back, fairly quickly, once I started taking Omeprazole to to counteract it, along with probs caused by other meds.

What I didn't realise was the Omeprazole is dangerous to the kidneys and can prove fatal, requiring regular blood tests to monitor their condition.

Neither my GP or rheumy had thought to mention this, their concern being how the Sulf might be affecting my liver.

I only found out myself yesterday from a couple of ladies on this platform.

Another side effect of Sulf that some folk experience, myself included, is weird, sometimes very disturbing dreams.

Hope you're one of the lucky ones that has no side effects!

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Bad luck about the ulcers! Rinse your mouth regularly with salt water to help with them. I did get them after about 2 years on MTX and swapped to injections, and they went away.

But well done for starting! I know it took me a while to take those little yellow pills, and they sat on the table for quite a while before I managed.

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Will do, thank you! :)

I was thinking to ask for injections after this prescription ends in 3 months, as I think it's better on the tummy...

Thank YOU :) xxx I just wanted to start treatment quickly as I'm terrified of the progression of the disease.........

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Bummer !! It’s a shame you’ve reacted so badly on your first dose. I’m lucky I just got tiredness I still do sometimes. Mouth ulcers are so painful 😖. My husband has suffered all his life. He was swishes his mouth with bicarbonate and water difflam spray from the chemist might help.🤞🏻things will settle down

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Yeah, fatigue and hangover feeling weren't great, but that was only bad the morning after!

The bad stuff was the tummy issues.. and ulcers I guess. But I can live with those I think?! As long as I don't get severe side-effects it's ok.

I will try that thank you! :) XXX

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My consultant told me to take folic acid 6 days out of 7don’t take it same day as methotrexate

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Yes, I was told to take 5 mg of Folic Acid the day after taking Methotrexate. x

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I used to take it one day a week, but mouth ulcers were terrible so consultlent said take 6 out of 7 days

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same... :O I will tell my consultant then! x

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did they go away when you took more? x

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Yes have no bother now

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Sorry to hear you are having side effects on 7.5mg

I found it took 12wks to settle side effects but not my tummy. So after 7 mths i started to inject 15mg weekly and wish I had started earlier. I take 5mg of folic acid day after I take methotrexate and if I have mouth ulcers take 1mg of folic acid on other days but never on methotrexate day. I didn't feel well on 5mg daily of folic acid. I do suffer from fatigue and supplement vit d in winter months. Trying to find a balance that suits you is the biggest challenge. All the best and hope you feel a bit better soon

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With the injection do you still get the hangover feeling the next day?

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I still feel under par and tired but because I can enjoy my meals without stomach problems it is a lot better with injection.

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Good about the tummy but not about the fatigue. I started taking a Vitamin B12 spray thing daily to fight fatigue, but it doesn't work when it's too bad...

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I do think vitamin supplements can help and as individuals we need different strengths to make a difference. It is trial and error I am afraid to find out what will help you but your rheumy nurse should be able to help too. Re fatigue I am not really making much progress but but natural vit d in summer does help. However I haven't been able to get the same boost using vit d supplements. Same with vit b12 as I don't seem to be able to get the level right. We are all on a journey and the aim is just to feel well!!

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You are very right there Nellp! It's not an easy ride and it's definitely trial and error.

We need to keep trying. What sort of 'natural' vitamin D are you taking?

xx

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What I meant was getting out in natural sunlight.

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Oh yes of course..! 🤠

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I do--for 24-48 hours post inject.

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That's great about the injections! So are you getting NO side-effects on these? I will definitely consider injections in future if tummy doesn't settle.

Do you still feel fatigued?

Yeah, the specialist said that she might increase the Folic Acid, depending on my blood work too.

THANK YOU! xx

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I had terrible fatigue on my first week or two and had a terrible diarrhoea incident in public. Now i set aside my Methotrexate day, Monday, as a day at home. Sometimes i get tired on the Tues but it s easing . Its settling down quickly to be fair so do stick with it. Apart from some blotches.on my sides and tummy am pretty ok on it. I take my folic acid on Friday which tends to make me feel "content "in myself.

Hope it works out.

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Yeah, fatigue is very bad for me too actually, so far 2 days since I took it. And tummy was pretty bad after 2 days and again after 4 days :o :(

I have chosen to start with it at the weekend cos I can relax and rest at home if needed.. So i'm taking it on Friday night. xx

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I will stick with it, but might consider injections in future if tummy doesn't settle. x

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Is the fatigue better after weeks of getting used to it? x

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I would say yes. I found now that its diminished... i get good days eg this week, whereas last week i seemed to want to lay down alll day

.i take my Methotrexate on a monday, so yesterday felt a bit tired mid afternoon..today, weds i feel fine.

Stick with it, its true what folk say, for most people,it settles down xx

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Thanks! I will do :)

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I have been on methotrexate for a year now and experienced those side affects at first.

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Thanks for sharing! xx

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Morning Regina .... just give your body time to adjust & take it easy the day after.

I have a pen with 25 mg dose (weekly) following day is much better now but still have an easy day 😊

Good luck x

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Thanks!! I will wait and see. As long as my blood work is ok too of course. Will have to go and check next week. May I ask something about the pen? Is this pen a "fast prick" on the skin or is it a long injection as normal ones with no pen?!

Thanks!! xx

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Hi, sorry for long wait for a reply.

It’s a pre measured dose in a pen, thin needle (you can’t feel it) I find it far better than tablets & kinder on the stomach.

Good luck xx

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No worries and thanks for replying!

Sounds good!! I will definitely ask once my month worth of pills is finished..

is it a 'quick' prick with the pen?

thank you!! xx

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Yes it is a quick painless prick ... 😉 xx

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Amazing.. just what I wanted to hear.. scared of injections and needles. But if it’s like a pen and hidden and fast I can do it!

Do you find that injections work faster and better compared to the pills? Xx

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Oh yes definitely, injections are tummy or top front thigh area.

The needle is hidden away which will be great for you, I don’t even bleed.

Unlike a small bleed when you have a blood test xx

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Sounds great. I’ll definitely ask for that instead after a month on methotrexate. That is if my blood work etc is ok on it for a month.. xx

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Great....good luck 🍀 xx

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I have been on this medication for over a year now, the only side effects that I get now is the fatigue the following day, I find it unbearable, my dose is 15mg, I also take folic acid 6 day's out of 7.

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Same, but I also got fatigue on some other days (yesterday for instance was super bad!) afterwards. xx

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Hi there! Everyone on here has a very individual and personal response to the meds we are given.

I have been taking MTX 20mg morning once a week with folic acid on the other 6 days, since November 2015. I initially was on less folic acid and had a few mouth ulcers. Increasing folic acid helped and not had any since. Always took just before bed and sat upright for 30 minutes and then slept through any nausea. MTX wasn’t sufficient on its own to control RA so also take 2g sulphasalazine ( split into two doses a day. And Enbrel ( now Benepali ) was added in March 2017. This combined approach has controlled my RA which has stayed controlled over this period. If I miss the MTX I know about it but I can live a relatively active life even including a dance aerobics class, yoga and Pilates - though within my comfort zone. I am now 5.

Please persevere. You may be one of the lucky ones like me that the medical regime works for and keeps the RA at bay.

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THANK YOU! I will persevere, despite the lethargy and fatigue and bad tummy... To me these are not severe side-effects tbh. I experienced worse with other meds. :O xx

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Btw 56 not 5! Typing variable!!

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Wow I am 60 and have been on the methotrexate for about 3 months now. I do take the injections. I am much better than I was but still not good enough to hold out to do anything much. My dosage has been increased twice. I cannot take the sulfasalazine due to stomach issues. I have been on everything under the sun for this mess and nothing helps me over 6 months. Some things have lasted a year but that is rare. The meds just stop working and the sed rate and pain to through the roof. This is the second time around on the methotrexate the first time it caused my liver enzymes to go crazy. Hopefully I can get through this time without that. So adding the extra meds have helped you? My Rheumy told me that he would do that if the methotrexate alone didn’t do it. Just wondering when he will add something else. I’m so miserable feeling like this for so many years. He has been trying to get things under control for me for about 12 years now. He is a great doctor and folks come from way off to see him. I’m fortunate to have him as my doctor. Anyway have a great day, Peggy

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Hi, same happened to me. I’ve been on/off since March. They started me on 10mg and within thirty minutes I had a mouth sore and by morning I had four, plus my lymph nodes went crazy. Doc stopped MTX until lymph nodes calmed down because I coincidentally also ended up with an upper respiratory infections. Three weeks later after lots of steroids and 6 pound weight gain; they restarted me at 5mg for two weeks, then 7.5 for two weeks and now finally back on 10mg. Hope this helps!

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Thanks for sharing your experience with me. Yes, I feel you about the mouth ulcers :( it's very uncomfortable but I guess I can live with them. What Im struggling with is the LETHARGY and fatigue. :(( not great at all xx

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Hey Regina79. I still feel bad the day after I take my injection. They have increased my dosage twice now. I had the mouth ulcers bad when I first started but now not so much. The medication is helping me I am hoping after this last increase it will help even more but right now I’m having a lot of weakness all over and especially in my hips which was not unusual anyway. But having mri of hips and echo on heart done to make sure nothing else is gong on. I was put on medicine for diabetes on Friday of last week as the steroids I am on and have been on for many years is causing a problem with that now. Can’t seem to get off of those without bad flares. Hang in there those ulcers will get better and hopefully so will the day after effects for you. But I know when I take mine I will be feeling bad the next day. I just go with it. Lol. Hugs to ya

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How long have you taken it for? I felt hangover and very fatigued the day after and also yesterday felt very lethargic at work... not great! But better today. Yeah, tongue ulcers still there.... hopefully they will clear up in time.

Thank YOU and I hope you feel better too. So sorry to hear about your diabetes diagnosis too :( xx

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Regina79 thanks so much. I have been on methotrexate since April or first of May. Anyway I feel that way the day after every time. Hasn’t changed for me. I’ve heard others say that the day after they always make it an easy day. Hugs my friend.

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Oh :/ it’s not great that the fatigue hasn’t settled. I could put up with it if it’s only 1 day but I felt crap most of the week after taking it really.

Has it started working now..? Do you feel relief from pain? I hope you do xx

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Good morning. I have been on 25mgs of Methotrexate for 2 yrs. with minimal side effects apart from mid afternoon tired spell( not sure if that’s just old age). Lol. It took 3 months on the Methotrexate to notice any improvement in my RA. But I went into remission for almost a year. I’ve now had some milder attacks but nothing that Advil can’t help out. I do wish you well on your RA journey.

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Same... yesterday at work everyone mentioned how 'tired' I looked! I hate that... I just felt as I needed to lie down pretty much all day! and I took the drug last Friday.

Not only for old age people then ;)

It's amazing about remission! :O It must have been so good to get some relief from pain etc.. wow. I wish it will happen to me.

What are you taking now then?

THANK YOU! xx

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Very bad luck it is supposed to be wonder drug , I cannot take it terrible tummy trouble, big sore on my body ,keep trying for a bit your body may settle down. Good luck R/Arthritis is so awful, hope they find a cured soon x

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Yes, but I'm glad I didn't get sickness and worse side-effects.. I still have bad tongue ulcers! :( hate them. Tummy was quite bad on Sunday and yesterday. I did feel much more lethargic, apathetic and fatigued since Friday :o I definitely don't feel myself.

I wish so TOO xxx

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I didn't have any problems to speak of the first month when I was on 7.5 and then 10mg, apart from feeling tired. It was when the dose increased to 12.5 and then 15mg that my gut issues and headaches started (I rarely have headaches normally). It takes time for the drug to build up. After trying to plod on with it (5 months) I thought I just can't live like this, it was annoying because it was starting to work for my RA symptoms. I've now changed DMARD. I really hope it settles down for you.

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Yes, the fatigue is very unsettling as if you need to be at work you can't feel that way all the time.. It's extremely uncomfortable :( All I want to do is being in bed and REST. Soon it will be my 40s birthday, end of September, and I can think of many ways I would love to celebrate as a huge 90s party in a club and dancing all night, but I don't see myself and my painful joints doing any of it... sadly. x

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What is your new DMARD? And how are you getting on with it? xx

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I started hydroxychloroquine last week, so far so good 👍 but like all the DMARD's they take ages to start working 🤞

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I see. I really hope it gives you relief soon enough :) fingers crossed.

So, no side-effects?

xx

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Early days yet but no seems good! Just hope it kicks in and works 🙄

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How long has it been? x

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Only a week 😂

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Like me on Methotrexate. Well let's wait and see then! I have to say though that my hip feels 'different'.. a bit better?! :O but everything else is still bad: shoulder and arm very bad, hands not too bad, toes have started getting bad :o

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We'll get there! eventually!

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YES! we have to! |:O) x

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Bless you darling,

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I started methotrexate 2 weeks ago , I found my throat very dry and had couple ulcers on my inside lip also had to run to the loo a couple times but all in all not to bad , very tired for first couple days after I'm hoping this will improve in time .. hope things get easier for you .

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