Newly diagnosed : Hello all, I have very recently been... - NRAS

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Newly diagnosed

Pink75928 profile image
Pink75928

Hello all, I have very recently been diagnosed after my first appointment with my consultant over a year ago on the phone. I only got to see him face to face two weeks ago and he has started me on Methotrexate this week. I took it on Monday and my goodness I’ve never felt so poorly. I slept most of the day yesterday, have had an upset stomach and today have a headache and what I can only describe as brain fog. So glad I don’t have to drive anywhere today. Please tell me this will get better. Currently sitting at my desk at home trying to work abs can’t focus at all. My work are being very supportive but I’m worried that if this is on going I may have to rethink what hours I can give. Sorry for rambling, this is so new and I’m so worried x

29 Replies

Hi Pink, welcome to the forum, you will find this a very welcoming and super helpful place to seek answers or to just vent once in a while like we all need to from time to time.

I was diagnosed in 2018 and Methotrexate was my first medicine. I am taking 15 mg once a week by Injection. It worked very well for me for 2 years and I did not have any side effects. I was almost completely painfree for these 2 yrs, forgot I even had RA. I do remember the Brain fog in early days but it went away after few days. I heard that sometimes your body just needs some time to adjust to the new medicine and the side effects eventually settle down.

The tips I got from my Dr and also from this forum are- Drink plenty of water, take your medicine at night before bed , so you can sleep through some of the immediate side effects. Also take your Folic acid supplements, they are usually prescribed along with Mtx anyway, but if the side effects persist you can ask for increased dose of Folic acid as well.

Hope Mtx works really well for you as it did for me. Take care & Good luck!

Knip profile image
Knip in reply to ketiv74

Don't take Folic Acid on the same day as your MTX though. At one point with a previous flare I had to go up to six a week. With my current flare, caught early, I'm just having it once a week. Hope things settle down for you...it's a really effective drug.

I get a bit of tiredness and brain fog the day after my Methotrexate (starts several hours after each dose) so I choose my day carefully - I try to have a free day or at least a lighter work-load the day after. I've also experimented with the time of day and currently inject about 4 pm so that it starts as I'm going to bed. Keeping well-hydrated definitely helps too 😊

I found that the tummy issues settled after a while although I get some nausia occasionally; peppermint and ginger help with that as well as eating regular small amounts, preferably before I actually feel hungry.

The early days of diagnosis and medication are challenging but it does get better. You'll find lots of useful advice and support here so keep posting. Lots of good information on the NRAS website too 😉

When I was on it I tended to be bad for at least 2 days so I had to change my work pattern. I also had terrible brain fog and fatigue. If you can try to change your work hours for say 2 months whilst you adjust to the meds it might help you as I know I was bad. If after 6 weeks it does not get better talk to your RA clinic nurse but if super bad call the anyway. It does take time to adjust to it but everyone is so different on these drugs so it is what you can tolerate.Good luck and make sure you let us know how you are doing.

Thank you for the quick replies. This is really helpful, I don’t know why but I just seemed to think that this was it and this is how the meds would always make me feel. I just had a catch up on zoom with my boss and she insisted I stop working. I think they’re worried I’m going to make a big mistake haha. So I’m on the sofa again sipping water and trying to not worry. This is pretty daunting isn’t it

It is. Honestly? I didn’t get on with metho (or leflunomide, or sulpha or hydroxy). Tearful, brain fog, struggling. None had any effect either. It’s ok if they don’t suit. Don’t suffer in silence. Let your nurse know how you are and that you can’t work. I worked my way through them all and ended up on the marvellous and effective if expensive baricitinib.

madme1 profile image
madme1 in reply to Pink75928

Yes but on here you are never far away from friendly, helpful advice and support from people who understand, and like I always say, "You're stronger than you think."

I found I adjusted to it over the first few months. I now plan an extra hour in bed the morning after, and that’s it. No other side effects.

I was on tablets before and I did get the odd methotrexate hangover but with advice from people on here lots of water the day before and the day of dose. If it doesn’t settle maybe you could ask fir the injections which most find better . Hope it settles . Sorry you’ve had to join us but it’s the best place for advice x

I took 1 dose of methotrexate via tablets and next day couldn't get off the toilet, throwing up and everything else. It took me 5 days to get over it (not saying this to scare, everyone is different) told the nurses there is no way I would ever take tablet again after that so I changed to injections and all the gut issues were gone.

I did get a headache day after and felt a bit feeble but this got better with each week. If you are suffering from upset tummy etc I would ask for injections, main reason they give you tablets is because they are cheaper 😉

Dont suffer for ages if it's really bad x

I found no gut issues whatsoever Once I changed to injectable Mtx. My joints were so much better too. x

hello Pink, I had tablets 17.5 initially and after 2 to 3 years felt very sick although my auto immune disease was controlled and I dropped gradually in dose but about 22 months ago now I was put on injections which suit better and don't feel so bad, ginger biscuits, plenty of water and inject just before bed on a Friday night so I have the weekend to recover if need be. I feel this works for me but don't struggle on please say to your consultant exactly how you feel x

It will get better. Promise. x 💗

Thank you xx

It’s very early days and I hope your employer realises you need to adjust to how you feel. I used to do Mtx on a Friday night so I didn’t feel tired on a weekday as I was studying. I did feel tired at first but that went after a couple of months. Be kind to you and if you need to rest more/sleep note then do it. xx

I was on MTX for 11months, firstly tablets , then injections. The brain fog and fatigue (MTX hangover) were a bit mediated by drinking plenty water and eating lots of carbohydrates the day after injecting, but the brain fog never left me in all that time. I had lots of gut issues with it too. Some people seem to do ok with it, so it probably is worth sticking with for a few weeks and see how things go.

My rheumatologist constantly persuaded me to stay on, retrospectively I should not have stayed on it for 11 months and eventually stopped it myself. I felt so much better within a few days of stopping. I'm now now advanced therapies with almost no side effects at all.

This is all so hopeful. Thank you all so much. I definitely didn’t eat even near enough yesterday, and Monday I was nervous so probably didn’t eat much either. Next week I will make sure I’m well hydrated with a full tummy. I do feel better this evening although after my boss told me to stop working I had a 4 hour nap. It’s just insane, I never sleep in the day. My work are being really good, almost too good. I’m a bit of an over thinker so my biggest worry is that they’ll just get rid of me. You all had been so kind and made me feel so much better. Thank you xx

When I was working I always took mine on a Saturday so I had all day Sunday to get over any side effects. Like others have suggested, I took it in the evening. so To be honest I started on it over 10 yrs ago so I can't really remember how I felt at the beginning. It had worked well for me. I too take folic acid 5 days a week, not on mtx day or the day after. I can understand that your anxious about work. I remember in the early days I struggled through the day because I didn't want it to look as if I couldn't do the job ( I was a teacher)I had a chat with the head and he referred me to HR who helped to sort out some adjustments for me. I don't know if things have changed but employers have a duty of care to make 'reasonable adjustments' for employees with conditions like RA . Or so I was told at the time, 14 years ago.

I hope you get over your problems and that it works well for you too.

It does get better Pink. Think all of here had the same side effects, some worse than others.Like mentioned above give it a few months to get your body use to the change.

I felt terrible couldnt do anything, couldnt sleep just awful for months. Sometimes it was that bad i thought i cannot carry on like this.

I moved from the oral MTX to the metroject 20mg at the end of last year and the change is unbelievable. Am almost back to being the good old me. Working without any major issues and running an training again.

It will get better. If you find the Mtx isnt for you for what ever reason there are lots of other treatments and drugs out there. But give it a chance it will get better.

Goodluck hey.

And remember your not alone the gang on here are great, lots advice and support.

If you could manage to take a week or two off from the pressures of trying to work whilst you on settle on Mtx you would be giving yourself the best chance.If your symptoms don’t settle after the first week….speak to your rheumy nurse & take her advice.

I found taking Mtx after my evening meal ,keeping well hydrated & taking the folic acid 6 days a week enabled me to settle quite quickly & I took it very successfully for years.

But don’t worry about it…..starting to take any Dmard is often difficult, but most people who manage to stick with it do really well….I hope you do too.

Welcome Pink. I’ve been on methotrexate for about 3 years now, side effects were definitely at their worst for the first few weeks of taking but then settled a great deal. As others have mentioned if you work full time you might want to switch to taking on a Friday so you can get through the worst of it over the weekend. For me side effects are definitely far worse if I am dehydrated so drink, drink, drink!! Good luck xx

hi Pink x

i don't come on here very often, but i see the emails so wanted to reply.

I've been on MTX for 14 yrs now (with a break to have children). I've never had side affects, and coupled with Cimzia (anti-TNF), I can live a normalish life.

But even with that, the medication doesn't deal with how you feel about RA. it is an an emotional journey as well. All i can say, is take one day at a time, and don't expect too much of yourself.

here if you need someone to talk to

x

Welcome Pink75928 this must be a very scary time for you. Yes metho can upset you tummy and make you feel crap, but we are all different and you have to give your body time to adjust. Do you take Omaperazole, if not it might be advisable to ask your rheumatology team about this as it can go some way to protecting your stomach from the affects of the metho, though there can some side effects from them as well. Most of the effects should begin to settle down soon, just take things as easy as you can and be kind to yourself, your body is adjusting to a lot.

I only lasted on the injections of methotrexate for three weeks. My stomach cramps got progressively worse each week. I am now on leflunimide and it is working a lot better and I don’t have near the stomach problems. Hopefully you will settle into the methotrexate but if not there will be something else that will be better for you. Take care.

Hi it’s an anxious time isn’t it? I remember it so well even though it’s over 20 years ago when I started. I used to be very nauseous & often physically sick the following day & felt generally yuk tbh. Back then there were on Methotrexate injections no Biologics either so little choice. I stuck with it & it did settle & it worked well for me & I was on it for 15 years. For me it did take a few months for nausea to settle but as others have said we are all different. It’s great your employers are being understanding at this difficult time. It will get better. X

Awww welcome to the understanding helpful "home" .

Most have already given the tried and tested tips we use, mine is to

say the first year is a bit of a roller coaster as your body accustomises itself.

Don't be afraid either to use your team especialy the specialist nurse, I did (and do)

which helped me get through the early days.

Yup some days are brain foggy, but survivable.

Virtual hug :)

Methotrexate is generally considered a very reliable treatment for RD. It is often the first DMARD to be tried. Don't give up too soon - your body needs time to adjust to any medicine. You will also be feeling more than a bit concerned about the diagnosis itself. That is something I escaped at the time I was diagnosed! Nothing much was known about the disease - and there was nobody to talk to about it. No wide discussion group, no organisations like the NRAS which keep us informed of new drugs and new research.

In some ways, our ignorance was our protection! Of course, ignorance is never advantageous, but when knowledge about a disease is limited even to those who have your interests at heart, the situation is far worse. I bumbled along without much besides aspirin and "gold" salts for 20 years until my first effective DMARD in the 1980s. I had almost no connection with any other sufferer except at clinical appointments, and only once met someone during those 20 years , who lived fairly close to me, with whom I could share my experiences. On the whole, it wasn't something to talk about.

You have been diagnosed in more enlightened times and although the disease remains incurable, there are many drugs now that can help you if one fails. This forum exists in order that we can share experiences and give encouragement to each other, and know that we are not alone.

I do hope you find the methotrexate helpful - give it a chance; but don't despair if it doesn't work for you. There will be other drugs.

I wish you the best of luck, and a long active life with this disease - that is the experience of many of us.

bienassis x

Hello Pink, for the vast majority of people the side effects of MTX lessen after a few weeks. I found that after changing to the injections rather than tablets, most side effects disappeared quickly. I don't know if you know about NRAS and Ampersand Health (and versus Arthritis).NRAS has an extensive library about every aspect of RA. From medication to fatigue and self management. They also have a very good help line. If you haven't done so already I would highly recommend that you do. The more you know(not from Dr.Google though) the better you can live with RA. I wish you all the very best.

I think methotrexate is notorious for being one of the worst drugs as far as side-effects are concerned. I personally am anti- methotrexate due to the side effects I’ve e peri ended however other people fare really well on it so it’s personal preference. It is known to be heavy duty on the liver and that’s why there are mixed feelings about whether or not you should drink alcohol whilst taking it. The best bit of advice I could give would be to not put up with any medication that makes you feel unwell and to always be communicative with your consultant/support nurses if you think the drug isn’t fair you. There are so many drugs out there to treat this condition and it probably will be trial and error for quite some time until you stabilise. I was diagnosed 12 years ago and have been on probably a dozen or more different drugs, half of which include biologics and anti -TNFs. Good luck with everything. Amanda

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