So on my meeting with the rhematology nurse when I first started methotrexate she explained that my immune system was overactive and the mtx aim is to bring it back into line, so to be "normal". So not have an underactive immune system but to have a balance .
I am on week 4 of mtx, going to take my 4th injection tomorrow, everything was going mega well but from Monday until today I've had a migraine, proper stonker; I've also had nausea +++ and diarrhea (sorry tmi).
I take 5mg folic acid 6 days per week.
I've got really big mouth ulcers and I think I'm starting to get shingles (always get them in certain part when I'm run down).
I'm new to all of this so have contacted nurses and they say if it doesn't calm down will have to come off it (forgot to mention shingles to them as that just started today).
Now what I'm asking is any DMARD is going to lower my immune system isn't it, I its probably going to take a while to get the balance right in my body if too much or not enough etc. Plus my body has to get use to all these things , the nausea and migraines are the things I'm finding the most difficult, will all DMARDS cause these side effects? Gut cell turnover like the mouth cells are quick hence I get thats why I'm feeling crap but I've slept about a handful of hours of the last 5 days and feel shocking. I thought being 4 weeks into taking it I would have moved past the feeling bad and that was only for the day after taking it not the whole week.
I really don't want to stop taking the MTX, ive already tried sulfasalazine and didn't get on with it. I need to get ontop of the joint situation, how long did you ride out the side effects?
Did anyone take an anti emetic ? I'm not chucking up just nausea all the time.
Be gentle with me, im not bashing MTX 😁
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Marionfromhappydays
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I'm sorry to say that you sound just like me when I went on methotrexate. Horrible isn't it!
And yes, the aim of DMARDs is to return your overactive immune system to a more normal level rather than supress it.
Some people do find that they have fewer side effects with the injection, but you may need to lower the dose.
And they do sometimes settle down but I wouldn't give it long - it's too miserable with nausea, mouth ulcers and diarrhoea. And shingles too - you might need an anti-viral course? Check with your medical team.
If the side effects don't fade rapidly then you will have to change to another DMARD - have a look at the NRAS website treatment page for the alternatives.
Thanks for replying, I'm trying to do things to take my mind off feeling sick but yeah it's horrible. I am hoping it's a blip, just emailed the nurses about the shingle thing, see what they advise.
Did you manage to hang on in there and continue on with the MTX ? Hoping I can.
I love reading your posts, I find your knowledge & experience really informative, thank you Oldtimer you have a really good way of explaining it all to us (I’m 10 yrs in) and still learning, thank you again
Mention the Shingles straight away if you do have them you need to be taking anti-viral medication as soon as possible. I managed to get the antivirals within 24 hours of noticing the rash and although it was very unpleasant I was only really poorly for three weeks but if you don’t get the antivirals you can have Shingles for a long time ....as you will read many people on here have mentioned.
I wonder if you really do get Shingles frequently are you sure it is not some other sort of rash?
Different Dmards Act on different parts of the immune system, and so although I usually bang on about people hanging on in there with methotrexate ....having the nasty sort of reaction you are I would definitely have another word with your nurse ...ask if you should miss your next injection...that might calm things down?
And definitely get something done about finding out if you really do have ShinglesNOW.
A Dr i worked with diagnosed it as shingles but its never gone on my record so he could have got it wrong (he was a renal Dr so 🤷♀️). Incredibly painful and makes me feel like I have the flu, neck lymph node swollen too , I've been getting it since I was a child and happens about twice a year when I get run down. Silly of me really not to get it looked at properly, totally.might not be shingles, I have emailed the nurses back to inform them so will wait to hear back.
I'm hoping this is a blip, thanks for your reply apprecaite it
Hope you get sorted soon....tbh doesn’t sound like Shingles...if you had had it that often I think you would have been much more poorly much sooner..but do get it sorted out.
Poor you. I'd check with the rheumy nurse about the shingles if I were you, you may need to miss a dose of Methotrexate.
Try not to worry about whether it's the right medication for you, there are plenty of alternatives; it's good that you're trying to give it some time but it's not worth suffering for too long.
Thank you, so frustrating. I feel like I'm burning through medications ! Really hope this one is the one for me , I have no idea if this is quite common as I know mtx makes people feel bit rubbish but thought it was just days after taking it .
Your immune system isn’t just a thing like a cooker with a dial to turn it from out of control, through overactive and down to normal then underactive. It’s a big complicated arrangement of different cells and chemical reactions, circulating through your blood as well as taking in your lymph system, spleen and bone marrow.
Each drug does something slightly different to sort out a malfunction, or block a process. So just because you are struggling with MTX doesn’t mean something else wouldn’t work like a dream.
And yes these drugs do compromise your system, but as long as your white blood cells remain in normal range then you do have some protection - otherwise we would all be living in plastic bubbles (as opposed to social bubbles....)
Methotrexate really does help many people but it took over three months to be effective for me, often lowered my white blood cells (had to stop occasionally but also was on Hydroxychloroquine which really helped too) and made me more susceptible to infections so I’d have to stop again for a while.
I had the same unwanted effects as you apart from shingles but got a pin point rash and sore patches on my skin that would go scabby... hair loss... what joys, eh? But it did work for me for a while till it was decided to try another alternative.
Others have said do tell nurse/GP about the rash/shingles straight away, best advice. Hope you can endure till something is done or side effects lessen; they often do. x
I had chronic chest problems on MTX which is why I had to come off it only 2% of people get it! Yes felt sick and horrid migraines on it too. I spoke to my consultant yesterday about my risk factors with Covid, (I only take one biologic Humiri) therefore she said that only gives me one point and deemed me not at high risk, in fact she said being on a biologic can actually give me some protection she explained why but i don t want to try and fill in the gaps of her explanation for fear of it not being completly accurate but it made sence. Anyway I'm just to take the same same precautions as everyone else. Steroids and being on several medications can suppress your immune system more and other health problems.
Who knows how long covid is going to be here for though, I personally think you're better off on a DMARD and getting the inflammation down; Could end up with permanent joint deformity if it's left untreated.
Yeah migraines suck but hoping its a temporary thing 😕
I don't think that you're meant to skip a Methotrexate dose when having the flu jab because it's a risk but because there's a school of thought that says that the jab might be more effective if you do so.
I've recently had both the flu and pneumonia jabs and haven't stopped my Methotrexate; I had a break when changing over from tablets to injections and the result was NOT good!
Just to say I was one of the people who posted a question recently about whether to temporarily discontinue taking mtx before or after the flu jab.
From the numerous helpful responses given, the majority seemed to have been advised to carry on as normal, although it had been suggested to a few that skipping a week of mtx after the jab might help to increase the effectiveness of the vaccination (and it does seem there is some research that backs up this theory).
Either way, as Boxerlady has said, and as far as I am aware, it is not a question of risk, simply that the mtx *might* reduce the immune response and therefore the level of antibodies produced by the vaccination.
Personally I decided to follow the advice of my rheumy and GP, and continue the mtx as usual after having the flu vaccination last week (and did the same when I had the pneumonia jab earlier this year) but that's not to suggest that would necessarily the right course for everyone
For the past 4 years I've been told not to miss any medication when getting the flu jab. The flu vaccine is not a live vaccine, therefore no need to miss medication.
Ask your consultant about it. They should have a good reason if they want you to go against this finding, but in the end you should take their advice as they know your case. The main thing is that they should not be handing out one-size-fits-all rules. Honest discussion is not discourteous to them.
I’m wondering why you need to skip your MTX, due to having the flu vaccine?
It’s perfectly safe to continue taking your MTX when you have the vaccine?
I take biologic, leflunomide and MTX and had my vaccine on Monday.
Because I was taking both the biologic and MTX on the same day as the vaccine ( as opposed to the day before/after), I thought it be May too much for my system, taking them all together on that day, and checked but was reassured that all perfectly safe.
I have just restarted MTX, having had to come off it due to multiple surgeries but was on it for years before the more recent surgeries, and always had the flu vaccine, without any detrimental effect x
BTW I'm sorry you have had a migraine. It really is sh**. I'm having my first pain free, clear head day today since last Thursday, a week ago: a WEEK!!! I have taken so much medication for head that I can't bring myslef to swallow the mtx pills. They seem so unnecessary.
If you have had Shingles before you should probably like me be on anti virals.It's vital to get it sorted as probably know when its coming because it hurts before the rash appears. I spent a few days in hospital last year with Shingles and months on a Pregabalin for pain wearing off slowly.
It was the first time I've ever had a single room in an NHS hospital and barrier nursing. It was so painful I thought I'd broken my hip ! and because it was from my lower back down the groin and around top of knee and back up it was "interesting' as only place on the body the doctors can see a nerve pathway on the skin so I was photographed and the medical students came to see it. Hilarious; " did it hurt" one said, bloody hell it did !
Hopefully your antivirals will work and you won't have a recurrence of this. If you thought you had a broken hip it must have been bad; What I have isn't that painful so I'm thinking I've been misdiagnosed. Bit reluctant to go to GP to be honest, see how I feel tomorrow
Marion, I’m so sorry that you are going through this. My first MTX injection is tomorrow and I am now so worried! As I had to take a break for flu jab (a week before and a week after, and then an extra week for getting ready for injections! ). The tablets were wrecking my white blood cell count so the swap to sub cut injection is to save me. I never had too bad side effects apart from the WBC being wiped out, but Was on 6 folic acid a week. I am feeling a wreck atm and my shoulder kills and my fingers are so sore and my feet. I will cry if I get to hospital tomorrow and they don’t give it me, but our hospital is still struggling to do blood tests and yiu need regular tests when You are on MTX at the start.....😫
I had shingles once about thirty years ago and I was off work for 8 weeks, and it was hell! All round my right eye, looked like I’d been battered in a boxing ring!!! On all the documentation for MTX you are supposed to get emergency treatment if you get shingles. Do take care and I hope you get on track again soon 🥰
I really hope it goes well for you today, it's mentally tough as well as physical isn't it . We don't really know what these drugs do until we take them do we so we've got to give them a good go, shame about the wbc problem hopefully the injections might help with this (injections I find really easy so thats a bonus) .
Its strange times everywhere with covid etc really doesn't help does it but if we can do this we can do anything 😆
I'm not sure if it is shingles to be honest i might contact my GP today but they are so busy and compared to what people here have said I don't think it is, although if it is then I might be in trouble ! I find the hospital kind of ping pong me between the GP and themselves and the GP don't ever know whats going on.
I expect in 2 weeks when you need your next test the labs will be back to normal x
Sorry to hear you are feeling so rubbish with the methotrexate. I’ve been on 20mg for just over two years now. I did experience nausea and headaches when first starting which lasted for about the first three months then seemed to settle. They didn’t last the full week though like you are describing, maybe 2 or 3 days each week so your side effects sound worse than mine. I didn’t take an anti-emetic but I think many do, at least on a temporary basis so might be worth mentioning to your GP. Has your Rheum got you working up the dosage gradually or just put you straight on full dose, as if the latter then I would expect the side effects to hit hard.
In terms of the effect of DMARDs on the immune system my Rheum nurse once explained it to me on the basis that with RD our immune system is ‘chaotic’, going after the wrong things i.e. healthy tissue etc and the role of DMARDs is to make it less chaotic so it just goes after the right things. I think this is why active RD is considered a higher risk with COVID than being on the DMARDs.
Thanks for your reply, sounds like alot of people have mtx induced side effects that go with time so I'm going to take my next dose and see how I go.
I've been put on a 15mg dose which nurse said is the standard one people start on, I was fine for the first 3 weeks just now its just kicked off. Hope its a blip.
Think my immune system is in a right chaotic state at the moment 🙃 hopefully will get put back into place.
I think 15mg is quite high to start on to be honest, I did 10 for four weeks, then 15 for four weeks before finally building up to 20. Might be one of the reasons why your body is reacting so much. X
No idea about shingles but MTX tablets gave me nausea and diarrhoea, I took folic acid 6 times a week but no help so have changed to injection which is easier on my stomach, unfortunately I do still get a few headaches but not full migraine. It all seems like a balancing exercise.
Marion, MTX gave me prolonged dull headaches with nausea and I had diarrhoea too. I initially had tablets and then metojet, which did not make much difference. I hope things settle for you soon.
Your symptoms sound very familiar, sorry to hear you had this as well; I'm going to press on taking it in the hope it was just a blip this week but not feeling great, it's like being in between a rock and a hard place !
Hi like you I had awful nausea & initially vomited the following day for first few months. The nausea lasted for probably 6 months but only a few days a week Not every day. I lost an awful lot of weight too & was the thinnest I have ever been in my life. I also had terrible mouth ulcers often 20 or more at the same time & was referred to dental hospital for treatment.
But Methotrexate worked well for me so I stuck with it & was on it for 15 years. I did get swapped onto injections when they became available which helped with the nausea a lot. Eventually my body got used to it. I was on other DMARDS but took these as well as Methotrexate not instead of.
I don’t know about migraine or shingles but like everyone says you need to check it out with your Rheumy team.
I don’t think there were as many options years ago so felt I didn’t have a lot of choice but it worked so yes I did stick with it but definitely the injections were better for reducing side effects as they bypass the stomach x
I don't have anything very insightful to add to the conversation, but I've always wondered if it was the case that the immunosuppressants dampened our immune systems down to 'normal' levels. Nobody ever really explained it to me when I was diagnosed, or since!
I'm so sorry you are having all these problems. RA . . . not a fun disease at all! I'm still trying to figure this all out too. I'm on MTX and Hydroxychloroquin and now whenever I have a bad flare up they also give me Prednisone.
So sorry to hear this, as you were so positive in taking Methotrexate in the first instance. My daughter started taking MTX tablets weekly 10mg and was stable for a few months, but still needed to take a higher dose to get rid of pain in hands and her ankle. Increased to 12.5mg weekly, after two weeks pain and swelling gone from hands and now need to move a little higher (15mg) to see if ankle will improve. But again will do this very slowly to avoid side effects. Therefore it could be the dose may be too strong and it may need to be lowered and increased very slowly. I think drinking plenty of water helps too. She has given up alcohol for now too (but not happy about that one). She also takes folic acid 5mg 5 days a week, leaving two days free before MTX. Good luck hope it settles for you.
Hope your daughter finds the right dose for her, good sign that is it helping. I know how your daughter feels about giving up the booze but when she gets use to the medicine she can have the odd one cant she , well that's what I tell myself x
I am hoping this is just a blip, ive taken my dose tonight so fingers crossed 🤞
I was really disappointed but realistically I've got to expect some teething problems so perseverance is key I think. Felt better today 😌
I am so sorry to hear you are having side effects from mtx. I have been on it for more then 15 yrs. I can get mouth sores if I eat arctic foods. nothing that I can't deal with. I can't believe no one has suggested a shingle vaccine. My husband had a mild case of shingles and Doc suggested he get the vaccine too.
I hope I can continue with it but will see what the nurses say.
I'm not sure if the shingles vaccine is a live on and we aren't allowed those I think if on a DMARD ? Would be lovely not to get this again though so its worth me asking x
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