Hi, I've had 2 doses so far of methotrexate orally so 2 weeks in, and it seems since starting it I have had a horrendous pain that started in the side of my chest (under my right armpit) and thru my back to the point it hurt to breathe and I really winced on moving, like I'd had surgery or something!
After a few days of this I took some gaviscon tablets as thought could be my reflux playing up as I have gastritis (already on lanzoprazole twice daily).
It then spread across my chest underneath bust area and settled under left side and disappeared from the right side. So I thought this is better so must be disappearing. Took 2nd dose of methotrexate and i think it's got a bit worse again since.
It's so painful it's like I've been beaten up with a baseball bat and I feel bruised, if u touch the area it hurts and if I move I sometimes scream out.
I dont really have any breathlessness or anything it's just so painful.
Does anyone else experience this with methotrexate or did they and it disappeared?? I really dont want to have to stop it unnecessarily.
I do get really bloated and get trapped air! Polite way of putting it ha! If u know what I mean!
I rang the rheum nurse but he wasn't very helpful so need to ring gp monday morning.
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Sara_A
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Hi 😊 I did take the tablet form but they disagreed with me too (constant sickness and upset my digestive system) so I asked the Consultant to put me on the injections (I hate injections but had to get over my phobia) Best thing I ever did. It took a little while to see results, but it made me feel I had more energy, my skin looked better, my hair grew back, inflammation settled.. But it's only short term medication.. After stopping, I went back to square one. Methotrexate injections for me, were a positive thing, some people have a negative reaction.. Like all drugs, its trial and error. I wish you well on your health journey and hope you have one of those good days xxx
Hello, I get unexplained chest pains and breathlessness from methotrexate but after a year my hair started falling out in huge clumps. I suppose this is to be expected with it being chemotherapy. The blood vessels in my hands also started haemorrhaging and are very painful with this medication. It causes so much nausea and dizziness I blacked out at a tube station just before Christmas. On the bright side it helps my lupus tremendously, at least I can walk and the joint pain and rashes are somewhat under control. I think the experience is different for everyone but there are a lot of side effects as well as positives with this medication. For me the side effects outweigh the benefits so, after two years, my rheumatologist has agreed to change my medication next week. Good luck xx
I have been taking metho for about 2 months now and have posted a few times about the side effects. I’m not having too many stomach troubles with it but I do take it last think at night . But the symptoms that are worrying me are the hair loss and blurred vision which the dermatologist does not feel is metho related but active lupus. It’s so difficult to know what to do for the best as if anyone has read my past posts will know that I have retinopathy due to hydroxy. Which I think is getting worse 😪😪
Oh really, I am waiting for my 2nd appt to see if the hydroxychloroquine has given me that too as the optician found something and when I went to see the ophthalmologist he did some more tests and scans and there were a few 'patches' but he said he wanted to re check in 3 months as they may have been ' non specific!!' Funny how so many of us have such a lot of 'non specific ' things isn't it ha!!
I tried so.e rennie today as I'd just not got any gaviscon tabs in my bag as we were out had ronnie instead and I burped and the pain eased a little so I'm thinking it probably is reflux related but am going to get in to see the gp tomorrow and not gonna take my 3rd dose of methotrexate due wed until I've been checked out.
I'm sure if it was something more serious I'd have dropped dead by now! Or had more worsening of symptoms like breathlessness or cough or fever etc.
I took methotrexate for more than 10 years and never had anything like that. Please talk to your GP. I used to get terrible headaches and switched to taking in divided doses, then I could tolerate it.
Sara_A. I’ve just started methotrexate - second dose tomorrow 🤞.
I have multiple GI issues and symptoms, including reflux and Barrett’s oesophagus and have had previous ADR’s to quite a few drugs. I asked to have the methotrexate by injection (metoject pen - very easy) and first one went well (nausea, headache and extra tired for two days - but otherwise just usual bleh!). No additional gastric issues or reflux above what I normally have and there was no problem getting the injections instead (done via rheumatologist).
Sounds like your GI issues are quite horrid so well worth asking if you can have injections instead (some who can't tolerate oral can often tolerate MXT this way).
Assume that you are having bloods monitored to keep an eye on liver function etc. (liver and kidney function tests plus full blood count)? Tests are usually done every two weeks for the first eight weeks after commencement of treatment, then monthly after that if all is okay.
If there are problems with pain or severe side effects in between (or before the first lot of blood checks) it would be usual to run the blood tests to check status of everything (surprised the rheumy nurse didn’t recommend this 🤷♀️).
No way of knowing if your pain is from gastritis/reflux (and that can be bad)...if unsure or pain persists may be a good idea to ask for blood checks - even if just for your own peace of mind - though your doctors should want that to!
Certainly worth asking if you can have injections instead - especially because of your reflux and obviously painful gastric issues.
Thanks KayHimm...one part luck and one million parts determination!
SFN confirmed (no sural nerve biopsy 👏👏). Will the MXT work - 🤷♀️🤷♀️ - work in progress (treating the underlying cause - lupus never been fully controlled). Have new rheumy who's committed to getting me on a treatment plan that works for me! And NO gaslighting ⭐️👏👏. (One small sentence but everyone here will know how much it means).
Now researching SFN and other potential treatments to slow the - fairly advanced - SFN (no cure 🤷♀️). Early research indicates IVIg may be good option - but not freely available in UK - at least for Lupus induced SFN. Unless I pay...🤣🤣🤣. Not funny, is it! And further research may throw up contraindications and/or something different. Will leave proper update post when a bit further on with things x
Sara_A...apologies for intruding on your string xx
I am glad you found a good rheumatologist - and one working to help you. So important, I know. This nerve stuff is tricky, but IVIG does look promising if it of autoimmune origin. Hard to get here too.
Keep us posted on your progress. Hoping you get results!
I did tell my cons that I have gastritis and that I suffer with my stomach anyway but he said I should be fine! Sp I agreed to try the tablets first.
I'm going to ring and see gp tomorrow as I want to either start something else with my lanzoprazole like ranitadine or get onto the injections.
I've only had the 2 doses and I'm sure it's way too early to tell but i do actually already feel that my hands are feeling better already?? I've already reduced my daily zomorph dose down as i dont feel i need as much pain relief. I know its supposed to take longer to kick in but I cant think what else it can be? I've only had hip injections and the steroids in that will only really stay local to the hip.
So I really dont want to have to stop it! It would be just typical that I'd have to stop it cos of side effects and it will be a drug that works!
Well Sara_A...I get quite annoyed at doctors who imply that side effects are somehow the patients 'fault' for not trying hard enough...so please don't fall for that little wheeze if that's the route they go down😬!
Here's something that might add weight to your argument for injections (or at least it should do). The patient information leaflet in with the MXT metoject injections states that PPI's may increase the toxicity of methotrexate - so the potential for increased toxicity due to PPI's (plus the potential for an increased dose due to worse reflux), plus your pre-existing and worsening GI symptoms - should be a prime indicator for a trial on injections.
And last - here's a thought - are you also taking folic acid (I take 5mg daily excepting the day I take the MXT). Folic acid can help with the side effects - and if you're taking less than 5mg daily on non-MXT day’s, increasing the dose of folic acid to 5mg may help with side effects. Also possible to ask for a prescription for anti-emetics if you suffer nausea and vomiting as a side effect.
I suppose MXT is like all drugs...some describe it as their magic medication...and others describe it as the worst drug they've ever taken. Sincerely hoping that MXT will be the magic drug that works for you (and me too 😉).
Good luck with your doctors. Be interested to hear how you get on x
Interesting, thanku I will look into it, I have suffered from IBS in the past a quite badly but I think that's just from being a nurse! Most nurse have IBS from poor dietary behaviour and lifestyle I think?!!
MTX and I did not agree at all. My entire body dried out and even shriveled some. I aged quickly. My lungs reacted also. It became difficult to breathe deeply without coughing. I had rib pain to the point that I thought I had broken a rib. When I barely scraped my skin, it became blood red. AND...I lost a ton of hair. No, MTX was not for me. I'm happy to be done with it and will NEVER take it again. There are some who do well on it, but I have the MTHFR gene mutation, which I have learned does not combine will with MTX.
Hello, Sara...I have been on methotrexate now for six years and remember that it took a while to adjust, but now find it a true life saver. I also have gastritis and duodenitis and was on proton pump medication, but recently was advised to step up to pantoprozole . For some time, I had suffered with pain such as you describe, but reading the accompanying sheet with my new pills, I discovered that it said that pantoprozole was contra indicated with methotrexate. A visit to my GP confirmed this, and so I now take ranitidine and gaviscon and, although I still suffer gastritis and the dreaded bloating, etc., it does seem to have alleviated the pain and soreness.
It might be worth a discussion with your GP or consultant?
Good luck and here's to a hopefully happy outcome!
Er, hi Sara. I get the same! In fact, have it now as reading this by chance! On Metho for 2yrs(?) now and have this often. Kinda mentioned it to Rheumy once amongst all the other symptoms but I didn’t bang on about it enough in the 20mins session to take it further. Thing is, like all of us I guess, I have pain pretty much everywhere most days to varying degrees and just wait for it to pass or take pain meds.. or try and go to sleep with meds and hope it’s a little better in the morning. Didn’t relate it to metho though... I think you shld contact yr GP if v worried... or 111 actually. Better safe than the alternative.. and nice to feel it’s nothing to worry about if it’s not - which I sincerely hope it is! x
Just had a look on line. Kidneys? Erk. I had my first acupuncture session for a year yesterday (2hrs!) and she said my kidneys are up the spout which is really making me flare right now (plus a ton of mega stress in past year in particular). And my thyroid. When are you getting yr bloods done next? Shld be once a month til they feel your bod is taking it OK and then will lessen them to 3. Maybe get yr bloods done asap at yr GP. Keep us posted and good luck. Ps drink lotsa water all day (as we all should) to help flush toxins through x
I had my 1st bloods done this week since starting the mtx, am on 2 weekly bloods to start with.
So I've been to the gp and he examined me and ruled out PE and worsening reflux etc
And I have actually got either atorn muscle or a fractured rib!!! That's what this pain has been. I'm tender in a specific area so that indicates this is more likely.
I haven't fallen or injured myself but only thing I can think is that the dog has pulled me hard on the lead at the beach.
So now the gp has raised a significant event as hes now realised that I'm not on any bone protection and have been on steroids for 12 yrs!! And my last dexa scan was 2015! Luckily it was normal but I should really have had another 3 yrs later.
Anyway I have taken this weeks dose of mtx and so far touch wood I have been ok .
My rib however is still very sore but I guess will take a while to heal, I have had a dexa app come thru a day after seeing gp! He did put probable rib fracture on it!
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