Other people : Hello my lifeline xxx So this week... - NRAS

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Gottaloveastaffy profile image
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Hello my lifeline xxx

So this week methotrexate completely

Wiped me out 🙄 and tonight my mum bless her asks me well why and how does it make you feel x and know what ?? I can’t answer that other than I feel awful x. And sadly I have the same conversation every single week x

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Gottaloveastaffy profile image
Gottaloveastaffy
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quatjen profile image
quatjen

Oh I’m so sorry I can’t help with the after affects of methotrexate, I do hope it gets easier for you, I haven’t taken it yet I’ve opted for leflunomide 🤞so far so good.

My mum has RA so understands, she was not good on methotrexate love her and just said if I can take something else try it.

Gentle hugs Jen 🤗

Lolabridge profile image
Lolabridge

It’s so hard to get the message across isn’t it?

You could say it’s like the very worst dose of flu (not man flu obviously !) and the fatigue is so draining it’s like doing ten rounds and being knocked out by (insert name of a boxer she will know!).

Sorry you’re suffering but we all understand. X

Methotrexate hangovers can be bad . 5 years in and things are much better. I take mine at 11 am then by the evening if I’m tired I sleet it off . Lots of water the day before and the day of MTX. I don’t suffer it as much now just now and again to keep me on my toes.

Dad always says you take too many tablets they are poisoning you . Can’t get it I couldn’t function with out them.

Mmrr profile image
Mmrr

Ditto.Over 4 years on and my mum still asks me when I will be better or why I'm fatigued. I just say mum I've got rheumatoid disease and leave it at that.

Kerensa21 profile image
Kerensa21

I don’t know how long you’ve been on it but it sounds like it’s really affecting your quality of life. I’d definitely let them know this at rheumatology, don’t play it down, there are other drugs x

Wobbies profile image
Wobbies

Oddly, both my sister and I are on MTX weekly by injection. She has no ill effects at all but I get awful gastric trouble and feel as if I have the flu. Still, it only lasts 36 hours so better the devil you know ... for me. Think it is generally a problem with RD, people can't understand how awful it can make you feel apart from the pain. Still, there are worse things, I suppose.

CFergie profile image
CFergie

This medication I felt almost killed me I was in bed couldn’t get up felt awful didn’t help one but I called my own GP who told me to stop the methotrexate immediately I had takes a reaction please get some advice from your own GP who knows yourself so much better that specialists they barley see you to know you. Hope you feel better soon xx

Egpa profile image
Egpa

If you are taking tablets ask your Dr or consultant to change you to metopen, I used to get loads of side affects with tablets. Now with injections I get the odd day feeling a bit sick but it passes very quick. Other times nothing. I take omeprazone to ease my tum. So much better not going in to my tum.

Judyloo profile image
Judyloo

Oh such a shame Gottaloveastaffy. I was put of salazopyrine to start with many years ago and it really made me feel queasy and rubbish. I have beenlucky on methotrexate. What dosage are you on? It maybe worth talking to your RA nurse because when my dosage was increased a couple of years ago she suggested I tried the methoject pens. That way the dosage bypasses your stomach and goes directly into your blood stream. You can also take a reduced dose as it is in liquid rather than tablet form, hope that makes sense. Pens are not scary at all either.

Sorry that you are feeling like that, I think it is hard too for families at first to understand.

Lorrayne profile image
Lorrayne

Hi, it's impossible to explain to someone who doesn't have RA just how "poorly" we feel and for them to be able to understand it, as they don't feel it, and therefore have no idea the effect our immune system is having on our bodies running amok inside us causing damage and yes best explanation is really bad flu like symptoms, temperature, fatigue & weakness, nausea and headache, not to mention painful joints that have no strength to perform even the most simple of tasks. The problem is no one can see it like you can a broken wrist or ankle for example. The medications including Methotrexate, because they act on the immune system, cause the same effects but the nausea and fatigue can be worse. I've been taking Methotrexate since 2002, for the first few years tablets, which made me feel really nauseous, then injection since. My RA suggested I take the folic acid six days week but not the day of the injection, this has reduced the nausea considerably. I used to use a Metoject pen, but for me I found that it shoots into your leg like a dart and hurts, I now use Methofill which is a little dumpy thing that sits nicely in your hand and which you can push down gently to administer, so much better, if you change from tabs in the future. Even though I have taken MTX since 2002, I still get the side effects, usually just that evening, which is temperature and nausea mainly (can still wake me up tho) and the following day, fatigue, weakness generally feeling rough, someone has referred to it as MTX hangover, brilliant description, but the remainder of the week ok, until the next week ! I hope you get on ok, talk to your Rheumatologist about how you feel and don t feel worried about asking people on this site for their experiences, I've had this for 31 years and others alike, sadly we have to live with this, no cure only control of the symptoms and to slow down disease progression x

kaypiercy profile image
kaypiercy

Hi sorry I have no clear answers for you I have been on methotrexate for 10 years initially on 20 mg but this has recently have been reduced to 15mg. In that time I have experienced at different times most the side effects described here, but have stuck with it as IMO taking it is better than the pain of my RA. I think everyone experiences the side effects differently , we are after all thankfully all different,I would suggest you discuss your concerns with your rheumatologist and work out a treatment plan that suites you, unfortunately there are always side effects to such strong medication and sometimes the cure is worst than than the disease. Probably not what you want to hear but RA is not a nice disease to have,I wish you well and hope your body can begin to tolerate the methotrexate or you can come up with a different treatment plan with your rheumatologist, never give up! As new treatments are being discovered as research continues..All the best

Kay

Gottaloveastaffy profile image
Gottaloveastaffy

Thank u all for your comments x I have my next appt Thursday so will mention this for sure x xx I’m glad you are all so supportive it means a lot xx

Skezza profile image
Skezza

Hi Gottaloveastaffy, I can only say that after many years on methotrexate it has controlled my arthritis and improved my skin issues. During the early days of this damn pandemic I stopped taking my meds and suffered flare ups and my psoriasis got very much worse. When I started taking the methotrexate again both improved and I now feel fine. I can’t remember if I had any issues with the drug in the early days, far too long ago😊, but obviously I persevered and have benefited from doing so. I take 15mg a week followed by folic acid the day after. Hope it works out for you but if you have really bad issues I would consult your specialist and maybe try an alternative. All the best, Skezza

Sallysuk profile image
Sallysuk

I take 20mgm of methotrexate and always not long before I go to bed with a large glass of water as advised by rheumatologist. If I am late going to bed I feel ' a bit strange' but not sure if I am imagining this effect as it has only started since I started reading everyone's experiences on this forum. I do feel a bit tired the following day but otherwise I have been very lucky and my RA symptoms are under control. I would speak to your rheumatologist as it is not good to have RA symptoms and unpleasant methotrexate side effects as well.

Gottaloveastaffy profile image
Gottaloveastaffy in reply to Sallysuk

Exactly x I have appt tomorrow unless they cancel x will let u all know how it goes xx

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