Have been in misery (bathroom issues) since starting methotrexate.
I took it for 15 weeks--have been off it for 3. Rheum. Told me 3 weeks ago to stop it for a week and take MiraLax. I'm taking the MiraLax but very afraid to start back with MTX.
Have appt. with Rheum. Nurse Practitioner in Thursday. A few of you here have mentioned taking shots of MTX -- how does that work?
Has anyone had to do that because MTX messed up their intestines. ( have IBS but have not had flare of it this bad in years and years. It is extremely painful.
And I'm so nervous if being thrown over by doctor because I'm so much trouble.
Please, any ideas?
pen727
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pen727
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Hi Pen, I inject once a week and it is much better as I no longer suffer from the tummy problems the tablets were giving me. Once you get your head around injecting yourself it's fine. Like yourself I also suffer from ibs and since using the injections I haven't had the problem. Hope that helps mandy
Mandy, thank you. For some reason I fear they will not prescribe it that way --maybe that's just my own anxiety about injecting myself--I think they could do this at the pharmacy.
Is it helping you with the lupus? You sound to be doing very well.
It helped me a lot at first but the side effects are impossible to live with.
Hi Jen, I would love to say yes but I'd be lying I'm having a rubbish time right now, on 17.5mg a week now of methotrexate up from 15mg and after a steroid jab on daily steroids too as well as hydrochloride . Just feel like nothing seems to be helping with aches, pains and fatigue even though no joints are swollen I feel awful. Been signed off work until September as it is suspected it's the weather which is causing the problems.
I am sure they will prescribe injections, my hospital have a contract with bupa who deliver etc. I was taught how to inject by a nurse at the hospital, it's very simple once the fear factor is over. I do unfortunately question all of the medication especially when it doesn't seem to make you feel better!! Horrible horrible illness
Hi Mandy, Yes, it is horrible ... (we are taking the same meds and I know what you mean about taking them.)
It does seem like things have become much worse in the summertime, and for some reason this summer has been the worst ever. It seems like I can't get out of flaring mode. I don't like the prednisone , but if I don't take it I'm practically comatose on the couch (and that is not much of an exaggeration ... It's scary.)
I hope you have some good support and help ?
Jen
PS. How long have you been taking the MTX-- because from what I understand it can take 3 to 6 mos. to have effect...
Since last September although increased only 3 weeks ago. I am going through the sofa hogging stage at the mo, each day I wake up thinking today will be better but within half an hour of sorting kids and having a shower I've had it!!!! Can I ask Jen do you feel like your skin around joints is on fire, this has been a constant and gets worse when I feel hot.... Can't bear clothes on joints etc???
The shower is like a heavy -duty exercise class, and what's worse is the force of the falling water hitting bruises, rashes, joints.
No wonder you're so exhausted after. Kudos to you managing to take on everyday--I just can't.
Yes, I've described it that way too--on fire -- and the skin around all inflamed ( wish I could send you a photo). The strange thing is, when it happens (and I'm sorry and concerned you've been having it constant---what do the doctors say, if I may ask). It happens-a lot in my feet, it seems, but if you touched them they would be ice cold.
Hopefully the increase will help-- has the MTX let you be able to decrease the prednisone at all?
I have MTX by injection after taking it orally for a year. Like you I suddenly developed bathroom issues with a very upset tummy which meant none of my other meds were being absorbed. I had a 5 week break then started it by injection, The only side effect I get is feeling a bit sick, but if you eat before the injection you have no sick feeling and I do feel tired for 24-48 hours then back to normal. Bathroom issues no problem as MTX by passes the gut. I only wish I had been started off with the injections a year ago, as I swear by them. It did take my local dr's surgery a few weeks to get the supply in but no real problems. Keep up with the folic acid, and good luck if you decide to go ahead with the injections. Best wishes Lou-lou
not very sharp on the uptake these days (and my eyesights not that good either--I got your name wrong :(. -- do you take plaquinil?); but that's a good point to consider: meds not being absorbed due to tummy issues. Maybe that why I can't seem to get a break from these flares.
I'm sorry to hear about the health problems you're having to deal with...i have depr. and fibro. I guess you're getting regular blood tests to check that the MTX is not causing liver problems?
I don't know if this is helpful but had a terrible bout of nausea when I took MTX this morning--(it's still going on). But just then I remembered I had forgotten to take the Folic Acid.
Thanks so much for the tip about the Sea bands-- very, very timely and will definitely check into those before next weeks dose. (Probably tomorrow morning.)
Thanks for your reply. I have blood tests every 2 weeks to check liver function etc. Always remember your folic acid! As I am on so much medication I get the chemist to make up medication in medidose boxes for me so I know where I am! (a mixture of forgetfulness and fibro fog!)
I am sorry to hear you also have fibro, it's a horrid illness. When I feel damn right ill I get the comment from certain people about yuppy illness and laziness. If only they understood.
I hope the sea bands work for you, either that or travel sickness tablets. It works for those on chemo (which is what MTX drug is).
Hope to speak to you soon, my next jab is in the morning
Take care and gentle hugs x
Yes Pen I too have taken both forms of Methotrexate for the past two and a half years. I'm also off it - week three - and I have unfortunately had the same problems with the injectable form (Metoject) as the tablets. However if I had to go back on it I would only be willing to take it by injection and many people find they have less GI problems with Mejoject than the pills. It really isn't as scary as it sounds I promise and is well worth a try. Twitchy x
I finally made it to the doctor and we're going to try the injections.
I'm sorry to hear it didn't work for you--have you found something that does?
I'll have to wait until next week to start; the doctor is a ways a way, and I couldn't get there today--had to take the pills and the nausea has been awful today.
Sorry it takes so long for me to reply. I really appreciate the info and if you get a chance post back.
pen xxx
No problem Pen. I went back onto the injections for three months but same thing happened. It's just me - I've got a very allergic disposition! I see the rheumy on Friday. I'm really not sure what's next. I don't want to try anymore drugs now but I guess he will persuade me to try another one. Good luck with the injections if you can catch the doctor! Twitchy x
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mandy
I'm having a rubbish time right now, on 17.5mg a week now of methotrexate up from 15mg and after a steroid jab on daily steroids too as well as hydrochloride . Just feel like nothing seems to be helping with aches, pains and fatigue even though no joints are swollen I feel awful. Been signed off work until September as it is suspected it's the weather which is causing the problems.
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