HI
thanks to mtx tablets causing oral thrush my RA consultant has suggested that I try mtx injections instead.
I will be going from weekly 15mg mtx tablets to weekly 10mg mtx injections
I wondered if anyone else has swapped to mtx injections to stop mtx oral side effects and if the swap worked ?
I am also trying the 6 days a week 5mg folic acid to see if that helps.
I would be grateful if peoples could let me know what worked for them.
many thanks
Hi lindyloo - I changed a couple of years ago to an IPen and it's so much better. Like you I was put onto 10.5 from 15mg. I used to suffer from an upset stomach after I had taken the tablets. No side effects from the IPen. Good luck and hope you have a positive outcome.
worked for me. I got mouth ulcers and tried increasing folic acid which helped a bit, but not enough. Swapped ro injections and they vanished. Plus was able ro drop a dose after a while. And that lasted around 5 years.
I swapped from tablets to injections and it has made all the difference. No more GI issues, no more nausea and no MTX hangover. I'd call that a result and hope you find it beneficial too. Do let us know how you get on
Hi, well the SC mtx helped a little but did not get rid of the mtx oral side effects entirely. taking FA for 6 days made little difference also. They have now decided that I have osteoarthritis also , it seems that some joints initially diagnosed years ago as RA are now osteoarthritis instead, gosh it's fun having both...what to do !! I don't know if the sc mtx at 10mg is enough, I was on 15mg mtx tablets before the swap..I did not realise until I wanted to change meds just how much trial and error is involved and at 1 appt every 2 to 3 months it will take ages to sort this out...
You won't get bored when you have RD. You never know what's going to happen next! 😀
I swapped from tabs to injection with no difference to my gastric upsets and mouth ulcers. MTX hangover were worse on injections even when the dose was dropped. I always took folic 6 days a week.
I have had my first injection today. I switched from tablets as I have been advised that the injections bypass the stomach. I assumed that there would be no more gastric problems .
Everyone is different and reacts differently to meds. The injections made no difference to my gut issues what so ever, and created bowel incontinence in me twice before I just had to say no to more pressure from the rheumatology dept to continue. It took well over a year for my gut to recover.There is at least one other person on this thread who experienced continued gut issues with sub cut MTX. The medication is still in your system when injecting although injecting seems to help reduce gut issues in some people. I hope you are one of them.
Sorry you had that reaction Mmrr, it must have been awful. I definitely hadn’t heard of the possibility of it happening because I think I would have erred on the side of caution. Did you go back to tablets?
No, I qualified for biologics and was fast tracked to them after complaining about my care and the unrelenting and unreasonable pressure to continue with MTX despite severe side effects. I received a letter from the rheumatologist stating that my care had been ' less than optimal '.I was still pressurised into taking oral MTX 5mgs along with the biologic (benepali). One dose started the bowel issues within hrs of taking it. I rang rheumatology and said no more, I will never take MTX ever again and will not discuss it any further.
I was started on a half dose leflunomide alongside benepali and have not experienced any side effects from it. I challenge everything now and accept nothing without discussion and provide written updates at every appointment which I ask to be scanned into my notes. I checked with the rheumatology secretary on one random occasion that my written update was in fact in my notes. It was, so I've left it at that.
I'm very polite, but I now challenge everyone and every suggestion made. I lead my consultation and direct the conversation into what is important to me, not the consultant. I am not interested in speaking about self management with a consultant rheumatologist. I'm highly skilled at managing myself and will not waste precious medical time speaking about ....whatever....I have NRAS and this forum for that. I take advice, I listen but the decisions made about my health are mine. I will not hand this back to a consultant ever again.
Having had side effects to previous biologics, I was offered a different biologic at my last F2F appointment. I said no, I would prefer another JAK inhibitor, I've historically done better on them than biologics. He offered me a choice of two, but recommended one over the other. I took his advice and have had a reasonable success with it. I understand that I may need to try another biologic if this JAK fails, but OK so far, not brilliant but ok.
The MTX experience will never happen again.
Wow, you have certainly learned from experience. I hope with time and by reading accounts like yours we will all be able to take control of our own care, or at least feel more able to challenge the professionals. The term Expert patient comes to mind.
What I have had reinforced to me over the past 6 years of living with RA, things that I've always known...I was a nurse and I was married to a GP....is that Drs don't know as much as they would have you believe. Rheumatologist are experts, whatever that means, in rheumatological diseases and medicines.
They know very little worth writing about in terms of the patient experience. They do not know which medication will work for any individual person, how could they?
We are the experts in day to day living, what works, what doesn't with our medicines. We as taxpayers have also paid for Drs medical training through our taxes, and continue to pay their very large salaries. They are essentially public servants.
I would not accept substandard work or to be spoken down too by a tradesman I employed, why would I accept being treated like this from a Dr that I also as a tax paying citizen employ ?
Well said Mmrr, points noted and will use in future .
Hi, I am a novice in this field, please explain the difference between biologics anf jak inhitbitors. my ra dept say they do not use humira any more but a synthesized 'humira', probably cost related...
thanks
A biologic medication is one that is made from biological material, animal parts, maybe mice ovaries as an example. When pharmaceutical companies develop a medication they obtain a patent on it which prevents anyone copying their product. When the patent runs out other companies can copy it, hence the term biosimiliar, and yes they are cheaper. Biologics need to be injected. Examples of Biologics and their biosimiliar are Humira and Adalimumab.
JAK inhibitors are very new to the market. They are synthetic, made from chemicals and can be taken in tablet form. Examples of JAKs are Baricitinib, Toficitinib, Upadacitinib and Filgotinib.
I haven’t but pineapple juice and yoghurt in the short term might help till you get something sorted.
pineapple juice ? is that magical ? thanks
I’ve never tried it (never had it) but when my mum was taken to a hospice, they diagnosed oral thrush and immediately popped off for pineapple juice. Might be worth a try.
Hi I changed from tablets to the metojet pen due to digestive problems. It works for me on that front and I’ve also stopped getting mouth ulcers. It’s much easier and I tolerate it much better. I am on a 25mg dose. I also take Folic Acid for six days a week, and again that’s improved my side effects.
I have my metoject pens today. will start injecting this week. I hope it will turn around these mtx oral side effects. does anyone know if I will still have to take hydroxychloroquine ?
thanks to all who have contacted me regarding this problem, a life saver....
swapped about 3 months ago - for me to try and get a slightly higher level of effectiveness. Didn’t realise the tablets were causing me so many tummy issues. Wouldn’t go back, very very easy to use. Personally I don’t feel the injection at all- slightly nippy about 10 secs after but that disappears.
I’m swapping to injections today! Tablets made me feel sick. We shall see…
Good luck!
I have had my first injection today, hope they work for you.
Hi, I'm on the jab but giving me a bad rash,hoping to switch back to tablet easier to regulate up or down with my GP, also on bio jab so feel like a pincushion, I also take folic each day I googled folic quite interesting information on wiki.
I switched 3 months ago after 19 years on tablets. My dose 17.5g stayed the same when I switched. The injections themselves are fine, (and so much easier than benepali). I switched because of feeling nauseous more recently on the tablets. Had upped folic days but still feeling generally nauseous. Still feel nauseous now, and after discussion with RA nurse seeing going to GP to see if it’s linked to another prescribed drug I’m on. Hope it works for you.
I switched to injections many years ago and they are fine and so simple to use. I take folic acid 6 days per week too. I am now having problems with lip ulcers but will discuss it next week when I see the consultant. Good luck.
I had been on 20mg tablets of MTX for about 4 months. I had had all the usual problems others have mentioned but also MTX didn't seem to be working at all - I was still in terrible pain. I switched to the injections and after 3 months was in great shape. Over the last couple of years I've been able to reduce the injections from 20mg to 12.5mg and will shortly be trying 10mg.
wow that's great, do you take any other dmards with the mtx ?
No, MTX alone eventually worked for me. Hope it continues!!
Hi Lindy, I changed many years ago to Metoject. Reduced nausea was a bonus. Taking 6 Folic Acid tablets a week was the way to go for me. Good luck, I hope you'll get on with it well.
I changed to injections a year after starting tablets, so I've been injecting 13 years. It was for no reason except a new Consultant increasing my MTX dose & thinking injections would be preferable in case of side effects. I started on pre-filled syringes, it was before pens. Unfortunately the dose was too high & I had some side effects I’d not had before, I went from 15 mg oral to 20 mg subcut, so he brought it back down to 15 mg. It would seem your Rheumy is accounting for the difference in bioavailability of subcut & reducing your dose from the off, so hopefully you shouldn't have any problems from the changeover. Neither should you with having your folic acid dose increased, I’m also on 5 mg x 6 days.
This link explains about MTX (Metoject, the brand most frequently prescribed) metoject.co.uk/uk-patients/ A nurse will talk through & demonstrate how to use the pen & probably watch over you injecting yourself the first time, though it is really easy even if you've not had them before. I inject into my tum, alternate weeks, just pinch an inch press the button, wait a few seconds & it's done. This was how I was taught but some inject into their thigh. For no other reason than being inquisitive I tried that but it hurt & I bruised. Now & again you may catch a blood vessel & you will bruise but it's nothing to be alarmed about. It is said that it can change the way MTX is absorbed but I’ve never noticed any difference in all the years I’ve been injecting. The needle is contained within the plastic sheath so there's no chance of needle stick injury. When I get my months worth I write on the box L or R, that way I don't have to try to remember which side I injected the previous week. You will be supplied with a purple-lidded sharps bin, hopefully one large enough to take plenty of pens! It is usually the case that injections are better tolerated if you have certain sideb effects from the tablets, I hope you find it resolves yours.
Unfortunately I continued to have unacceptable side effects on methotrexate injections and had to stop it. It affected all my gastro-intestinal tract, as well as having mental effects. I was so much better off it! I had to transfer to azathioprine as I had already had problems on other DMARDs. Some nausea and diarrhoea with that but bearable.
ok thanks,what is azathioprine ? never heard of that one...
It's an old DMARD. Last resort!
Hi , I suffered for a year taking tablets, nausea, headache etc , mouth ulcers,used to have to spend 2 days in bed. I wanted to come off it, but my Dr then put me on the injections. A life changer, no side effects whatsoever. I have now even reduced my dose to 7.5mg , and still under control
I would love to try injections but have been told I can’t because I take Rivaroxoban an anti coagulant.
Hi. I was taken off 20mg MTX tablets to 15mg MTX injections to counter severe headaches as my only side effect. After over a year, the injections have no side effects except for thinning of my hair (!). I also take folic acid 6/7 days, making sure to skip it the day of my injection.
I swapped over too and it is sooooo much better. Far fewer side effects especially with the frolic acid x6.
Hope it works as well for you x
Yes I went on to injections for this reason and I also take 5mg folic cid 6 days a week. It has made a big difference. Hope it does for you too.
Although I'm not on Methotrexate anymore when I was I swapped to injections due to tablets causing mouth ulcers. I was given a lower dosage too. It stopped the ulcers so give it a go if you're inclined to
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