Hi all you lovely helpful people on here, I'm hoping that you may be able to offer some help with this?
I recently posted after being diagnosed with RA at the end of February and was about to start Methotrexate tablets but had concerns with the side affects as I have a sensitive stomach which once upset can cause me real problems for weeks if not months before it settles again.
In the end the lovely nurse at the hospital arranged for me to start with the injections together with taking Folic Acid for 6 days to offset any side affects. Most of the first week all was fine, no side affects to speak of apart from maybe a little tiredness. But on the Sunday before the second dose, I started getting gastric issues which have lasted all week and I have felt really out of sorts and at times quite rough, tired, upset stomach, not felt like eating etc and not really able to work much. I have had my first blood test today and they also asked for a urine sample which was negative.
It has eased a little but now but still not completely and I am due to take the 3rd dose later today. I have spoken to one of the nurses at the hospital and he has asked me to try again if possible this week to see how I get on but I am reticent as I really do not want to suffer again all week and over Easter, so am considering missing it this week to see if it settles. I was feeling quite well before I started taking the meds!
I would appreciate it if anyone has any thoughts or suggestions with this.
Many thanks
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JanieJ
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Is it the MTX or could you have picked up a bug ? I’ve been very off this last week lots of fatigue and gastric issues. Just a thought. It can take a number of weeks to settle. Not much help when your suffering but RA meds are notoriously slow at settling.x
Hi, thank you so much for your reply, I really appreciate it. I'm pretty sure it's not a bug as it's similar to very old issues I used to have before I was able to stabilise my digestive issues. I have heard that it can take a few weeks to settle but unfortunately, as this is my weakness if my digestion is upset then I really struggle to cope and really wouldn't be able to cope with weeks of this. At the moment I am considering missing this week so that hopefully it will settle down and I can catch up and then try again next week? x
It sounds like it could be something else if it happened so long after the injection. Do you want to stick to a particular day? I do it on Saturday so that I can rest up on Sunday but if that's not an issue for you maybe you could do it as soon as Easter is over?
Thank you for your suggestion, I work from home so fortunately, any day is as good as another really. I didn't end up taking it last night as I fell asleep beforehand ( as well as this I have an old dog with arthritis and dementia who keeps me awake at night, so not getting the best sleep atm! Not ideal but not her fault). I am considering taking it today as I understand you can do so a day later? If not I will take it again next Monday when hopefully anything else that might have caused this will have worn off and see how I get on. Thanks again 😊
Hallo JanieJ. Sorry you’re having a less than good time on Methotrexate which is notorious for making you feel vile if it doesn’t suit you. Give it a go for a month or three and if it’s still making you feel horrible each week come off it. I absolutely loathed it and after six months of feeling really grim with foggy brain, sickness and gastric upsets I refused to have anything more to do with it and was never persuaded to have it again. There are plenty of drugs that can be used without methotrexate ( though it seems to be one of the drugs of first choice of some rheumatologists as they’ve used it for years) but that doesn’t mean that you have to continue with something that makes you feel worse than the original problem you started with! I obviously am speaking from a less than satisfactory experience with a drug that some people find perfectly acceptable and you may find that you settle down on it but if you don’t it’s not compulsory! Very good luck in the next few weeks and hope you feel better soon.
I am in total admiration that you lasted that long, I'm afraid if I have another week of it I won't be able to continue on it, as I am unable to function properly as I need to be able to. Unfortunately, it is a weakness I have suffered with all my life and only been under control again for the past 3-4 years or so and not keen to go back to that.
Thank you for your good wishes and for taking the time to reply. Take care.
Unfortunately, covid can also cause all the symptoms you mention, including fatigue, feeling rough, gastric symptoms and nausea as confirmed by the ZOE list, which reflects the responses of people reporting daily on how they're suffering. Omicron rarely causes a raised temperature or loss of taste/smell so don't expect those. If you haven't done an LFT test recently that would be a good idea.
It's odd your reaction to Methotrexate by injection didn't happen sooner so I do wonder if it is something else.
Thank you for your reply and your suggestion. I must admit that it hadn't occured to me as I work from home and haven't been out for some days. I don't feel sick just have very troublesome digestive issues and feeling very much out of sorts, so that I have been unable to work so am way behind.
I also had though that if I were to get a reaction it would be sooner but again I have been known to react some days later after an event so thought it was a possibility.
I agree with the others it could be completely unrelated to the mtx especially as it happened nearly a week after the dose. Injections bypass the stomach too so less chance of an upset. People commonly get side effects the day or two after. If you have a sensitive stomach anyway it’s likely to be something else that’s upset it or were you getting anxious about taking your second dose? The only way you will find out is to carry on taking it as prescribed and go from there, don’t think about side effects as that in itself can cause problems. 🤞🏻 For you.
Thank you Kitty. I remebered you saying before about not thinking about side affects and I did think of that and .started the injections feeling positive, especially as I was feeling quite well anyway so was a bit surprised when this started on the Sunday. You could be right that maybe I was feeling a bit anxious without realising it about taking it the following day but that would not normally result in affecting me to this extent and lasting all week.
I aso have an underactive thyroid so am on medictation for that which has resulted in raised liver enzymes. Thyroid issues in themselves can cause many problems so was concerned that the Methotrexate might be inpacting on that but will know more when I get the first blood tests back to see if the levels are raised or not.
I will continue with it for at least another week to see if this continues and will hope that this is just a blip in the journey. Thanks again 😊
Both my daughter and I had gastric issues when on methotrexate injections (I felt very nauseous for several days each week and my daughter threw up constantly for a couple of days each time). However, for both of us the symptoms started just a few hours after the injection. I would be very surprised if it took several days to start.
Thank you for that. I do have a complicated digestive system! Sometimes, it can take a few days for things to affect it. It can come on and when I wonder why but I can usually go back to something that could have been the culprit some days previously. I will try again and see if it happens again and keep fingers crossed that it was a one of!
I agree with others that it seems strange it’s happened a week after injecting. You would normally expect side effects fairly quickly. Is it possibly a combination of a bug of some sort, along with the anxiety of doing the next injection. As Sunday would be getting close to injecting again. Personally I wouldn’t omit the dose, as it will impact your blood results, and your rheumatologist may even consider increasing your dose if your bloods were looking good, and showing you were tolerating the drug. Because I presume they wouldn’t know you’ve omitted a dose. If your working, would it maybe worth considering moving to the Friday evening or the Saturday, to allow you some rest over the weekend, making it easier to cope on Monday with work again. It’s amazing how you may not feel stressed, but subconsciously you are, which given your history of gastric issues would be understandable. Hope things settle soon for you 🤗
I was feeling a little anxious about administering it myself but asked myself why as it wasn't difficult, so thought I was not unduly worried and not enough for this sort of reaction.
Unfortunately, I also have an elderly dog with dementia who frequently disturbs me in the night which is disturbing my sleep doesn't help matters and I fell asleep last night before taking it.
I am planning on taking it this eve as I understand that it is possible to take it a day later and will hope that all will be well as I am keen to get this under control asap.
Thanks again for taking the time to reply, it is much appreciated 😊
Hi, I had a lot of trouble with mtx tablets, I have been on mtx injections 💉 for about 3 or 4 years took a while to settle down. I have folic acid 6 out of 7 days but I also the omeprazone it started twice a day now I have it once a day. If I do feel a bit sick after my injection I usually have a few ginger biscuits not very often though. Good luck hope it all turns out OK for you. I have missed up to 4 weeks because of jabs and infections and was OK when I stated up again just a bit tired.
Thank you for this and I will try the omeprazole as well if the stomach issues come back. I was given these when taking the naproxen for the inflammation so could well help.
I was very tired last week is this usual with Mtx?
Dear JanieJSaw your post this morning and have to respond.
I had a hellish time with methotrexate right from the start
When newly diagnosed (2019) I explained to the consultant that I reacted badly to pharmaceuticals so had always tried to avoid any drugs unless absolutely necessary.
He pointed out that drug treatment was necessary with RA as early as possible to hold up the progression of the disease.
So I accepted that and promised him I would try it for 6 months at least to allow it to work, regardless of side effects. I didn’t have a history of gastric issues - just sensitivity issues.
I kept to my promise, hoping that, as time went by, it would all settle down …….. it didn’t.
Over the 8 months that I persisted,
I was at my local hospital 3 times ( all unusual for me) with gastric trouble…. Having a scan, prescribed buscopan for constant discomfort….all of which was worse than any of the RA symptoms .
Finally, I could take this no more.
The tablets were switched to injections but this brought no relief.
In fact it was worse because I was then dizzy all the time and had continuous brain fog.
This was all before I found the forum, I stopped taking the methotrexate immediately.
Within days I began to feel better.
I arranged a review of treatment only to find that my rheumatologist had moved to another job and the 2 locums that I have seen since got it completely wrong for me again with sufazalazine and hydroxychloroquine both of which have also had horrendous side effects.
The latter left me with tinnitus which everyone excuses by saying “it is a very rare side effect “
Thanks very much !!
(By the way, I read that many covid patients who were given hydroxychloroquine in hospital have also been left with tinnitus)
This was the view of not only the three rheumatologists that I have subsequently seen but also the ENT specialist that I saw yesterday.
I have now run out of rheumatologists ! But , thankfully,
The last one I saw ( this appointment was made by the r nurse after I had finally been so distraught by the situation on a phone appointment that I completely broke down and swore at her out of absolute desperation.
People who know me wouldn’t have believed this because I never swear….
Oh dear…… this is a very long post….sorry….BUT , yesterday I had my third injection of Benepali.
The reaction to this is completely opposite to the DMRDS so far……. No side effects and immediate improvement in all RA problems.
After such struggles, I can’t believe that I have no pain, more flexibility in my movement, no brain fog and a palpable return of energy flowing through my body……life given back to me.
The nurse who did the home visit for the first injection was of the view that I shouldn’t have had to go through those years BUT , of course
This is the NICE guideline and down to the cost of bio similar treatment.
I understand that the guidelines have recently changed in order to make biological/bio similar treatments available sooner to the newly diagnosed.
Do ask Janie.
If I were you , I would not take any more methotrexate ….. my gastric s have still not recovered from it
And I have the bonus of constant tinnitus from the hydroxychloroquine.
Sensitive bodies do not respond well to sledgehammer drugs.
A targeted biological/bio similar may eventually be the solution for you too.
Hoping that you have a consultant who understands…….
Thank you so much for you message, it is very much appreciated.
After the RA being triggered by my first flu and booster vaccines just before Christmas which I was never keen to take but did for seemingly good reasons, I must admit I am not keen to try the mtx again and asked several times if any of the side affects could be lasting and not be reversed and was told they would all go once I had stopped taking it, but your tinnitus suggest different?
I feel better today and much more like myself and after a 'challenging 8 days' I'm not keen to repeat the experience but feel I should perhaps give it another go in case something else was the cause.
Most people here seem to suggest this as usually symptoms present themselves in the first day or so. Can I ask if your symptoms came on quickly or days later as in my case?
So far the rheumatology department have been very helpful and the nurse I spoke to yesterday did ask if I could to give it another go but that if I did suffer again then maybe this wasn't the drug for me.
I find this particularly difficult as I try not to take any medication apart from the one for my under active thyroid which can also be problematic. I try to use natural treatments whenever possible, so for me to take a drug like this for me is challenging.
My mother had RA and died far too young due to steroid damage and remember well the pain and deformities in her hands mostly. So am keen to get on top of this the best way I can.
Thank you for taking the time to reply, it has been very insightful and I hope you have finally found the right treatment for you and continue to feel the improvement and stay well.
Complain, complain, complain. Nicely, of course. Yes it's worth trying again in a week or so, but if it happens again....you have shown a cause and effect.
I spent too long putting up with the intestinal effects of methotrexate - large ulcers, intestinal hurry and losing my breakfast every morning. Feeling terrible and feeling stupid (my d-i-l thought I had early dementia). I'm much better now!
Thank you for this, it's much appreciated. So far the rheumatology department have been very helpful and have already said that maybe this isn't the drug for me but I will give it another go and hope that I don't have a repeat of the last week!
I'm afraid that having spend years suffering with intestinal issues and been in a good place for the past 3-4 years, if it happens again I will stop taking the methotrexate as no way I want to go back to that again. Here's hoping 🤞
It's probably no comfort, but I started on MTX very recently too, and have taken two doses orally so far.
The side effects are exactly as you describe for me too, fatigue, brain fog, and stomach upset.
I took my last dose on Thursday and still have stomach ache today (Tuesday).
To be honest, having read about the side effects and people's experiences of MTX I was dreading it. But despite it making me feel a bit rough it's not as bad for me, as I feared. And in theory (in theory...) It gets easier as the body adapts. I feel very fortunate not to be as unwell on it as some.
You've done exactly the right thing in speaking to the nurse. My only worry about taking a break from it this early is that when you re-start you might be back to square one in terms of side effects.
But we know our own bodies better than anyone else and you must do what is best for you.
Hopefully knowing you are not alone in experiencing such effects may give you some comfort and support.
Hi Seb, thank you for you message and your good wishes.
I was interested to read that yours was also triggered after receiving the vaccine. Mine was triggered in December after my first ever flu jab, followed by the booster (Moderna) less than a week later. It took off with a vengeance the day after. Not that it helps but can't help wondering if I never would have got it if I hadn't been persuaded to have the flu jab and the booster.
I had intended to have the third dose last night but unfortunately fell asleep beforehand but considering taking it today if I can. If not then I will try again next week and see how I get on again. Fortunately, the nurse is aware of this.
After being triggered by the vaccines, I too was very concerned by the side affects for this very reason, especially the nausea and stomach upset and although initially prescribed tablets, in the end my consultant was happy for me to go straight to the injection which by passes the stomach, so do try asking for the same. Apparently, the tablets are the cheaper option which is why they try them first!
I have to say, I feel much better today and after a difficult week, it is so tempting not to take the MTX, especially as I had been feeling well before I started it. I had been taking Naproxen for the inflammation which had been working quite well but still another drug.
I guess it is all trial and error with the hope that we can be stabilised quickly, with the minimum of disruption to our lives on this new journey.
I do hope that you manage to resolve your side effects quickly and that you are fortunate in having as understanding a team with this as I have experienced so far at my RA department.
Thanks Janie. It's amazing to hear your symptoms triggered after a flu Jab and Covid booster.
I've put myself through the mill debating what might have been had I not had the vaccine. I'll never know for certain, but a very strong coincidence at least.
It was good to hear that you're feeling somewhat better at the moment. I know it's a tough decision to take something that may make you feel rough again.
I didn't feel quite so ill after the second dose, apart from stomach ache. I'm hoping that pattern will continue.
I’m 8 weeks into methotrexate. For the first few weeks I def had gastro issues but taking buscopan for a couple days definitely helped and the guts are fine now. I’m def more tired and brain fogged. And it’s not working. I’m back on a reducing dose prednisone and away to add in sulphasalazine to the mix. If no improvement then biologics next. Not sure wot to suggest but you ain’t alone. Hugs.
Thanks for your input. Unfortunately, stomach/gastro issues are my weakness and I don't function at all well when they're playing up, so would not be able to tolerate this for very long. I'm definitely feeling more tired which again I can't put up with for long with my work schedule etc. Although tiredness and brain fog I get anyway as I also have an underactive thyroid and that can be one of the issues as again a balancing act with correct meds and dosage. It's hard when you're usually a clear thinking human being and people start looking at you strangely when you mind goes blank during conversations!
I hope you manage to get yours under control soon and take care 🤗
Morning JanieJ, I've had no problems with methotrexate, is something else going on with you, as others have suggested a bug or fatigue? Get well soon. I wish you well.🐕🐕
Afternoon Rita, not that I'm aware of. The issues I was having I have experienced before but not for some years as I have managed to get my 'sensitive stomach' under control so I wasn't expecting this particular problem. Nausea, bloating, indigestion, yes, but not this. I am feeling back to normal today and considering taking the Mtx today as I feel asleep last night before taking it, if not then I will try again next week, as I do want to give it another go. Thank you for your kind well wishes 😊
Hiya Janie. I'm so pleased your nurse was understanding of your concerns & started you on injections & max dose folic acid. I'd do as you have been asked & inject this week, that way they can't say you've not been compliant! I'm afraid I’m also wondering if it's unconnected as you didn’t have the quantity of symptoms with your first dose but I guess all you can do is sit it out & see if it is a bug, see how you are by your next dose. The time of year & with the weather being up & down it isn't unusual for quite a few to be doing the rounds.
What concerns me is your sensitive tum & the meds we take. All have the potential to to upset it, you probably realise MTX is the only DMARD available in injections which bypass the tum, all the others are tablets. That is until you come to the next step up of anti-TNF's/biologics, unfortunately JAK inhibitors are also tablets.
I think a good talk with your helpful nurse would be the way to go if you are unfortunate & it is that you're reacting to the injections. Discuss your options, see if there any prophylactics she can offer if she wishes you to continue & be sure it's not MTX or whichever other DMARD is recommended next. You'll find something I’m sure if it's not for you. 😊
I would like to mention folic acid. I was on Methotrexate for 2yrs . Started with a low dose and gradually built up to 15mg. As I got up to the higher dose I was told to up the folic acid to counteract the stomach problems I was having. My stomach problems got much worse. Dreadful bloating, wind and bowel problems. Changed the folic acid to a liquid one but that didn’t help. I was told to stop both . I ended up on a gluten free diet and dairy free which eventually calmed my stomach down. I agree with others, give it another try as it does seem strange it took a few days before you had any side effects. I mentioned the folic acid as that is taken a few days after Methotrexate.
I have been told to take Folic Acid for 6 days, omitting the Mtx day, which I had been doing. I don't have diary and am mostly gluten free not because I am intolerant but because it helps when I have digestive flare ups.
My problem is that I don't like to take any medication, unless I have to. I already am hypothyroid and on medication for life with that. With this being triggered by the Flu and Moderna vaccine making me more apprehensive with what I am putting into my body.
I was tempted to see how I got on and if I could help myself but was persuaded that the earlier it is treated the better. I will give it another try and see how it goes and hope that this was a one of.
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