I've all but ditched the MTX. It ruins my Friday which in turn ruins my weekend. Sick of the dread of taking it and the nausea I feel before I've even got a single tab down. Hiding them in pieces of chocolate etc doesn't work.
I wondered if there were any alternatives for MTX that might be in capsule form? I take Lansoprazole for the acid reflux and can get the capsules down with a glass of water no problem. But I can actually take a thyroxine tab every day without feeling ill so maybe the issue is just the MTX? I won't consider injections as I had to inject when on a trial and the nausea before taking those was even worse.
Fed up with it all and tempted to go meds free.
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whitedog
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Funnily enough, I know someone who has just qualified as a hypnotherapist. I'm a bit sceptical about stuff like that but I don't know how it's supposed to help so might have a chat with her.
I used to have to inject when I was first diagnosed and went on a MTX/Etanercept trial. I used to feel sick just opening the fridge and seeing the boxes of stuff so that's a no go for me as well!
It does sound like a phobia of side effects of the MTX if you're fine taking your thyroxine tablets. The lansoprazole may not be that it's ease of taking capsules rather than it solves the acid reflux & you don't experience side effects from the ppi itself. It's a tricky one, maybe related to fearing side effects plus the fear of taking multiple little yellow pills possibly initiating the thought of more nausea?
I do know that MTX can be prescribed in liquid form though I think it's usually reserved for children, you could ask the question though. Also, you don't say how long ago it was since you were on the trial & injecting. Nowadays subcut MTX is more regularly prescribed in a pen form, press a button & it's done & over with in seconds & they don't need to be kept in the fridge if that was a trigger. To be honest if I had the option I'd still prefer to have syringes but most people prefer pens.
How do you usually try to take the MTX tablets? If you're trying to take them all in one & possibly heightening your problem you could try taking them as my Consultant recommended, with meals. Because the dose was divided through the day & taken with food the idea is that there isn't the 'hit' on the digestive system, therefore less chance of nausea. My starting dose was 15mg so I took 2 with breakfast, lunch & dinner. I was advised against taking them at night as they may sit on my stomach & make any nausea worse.
You don't say either what dose/how many days you took folic acid. You probably know that MTX nicks off with the little folate we store so it's prescribed to help with side effects therefore, theoretically, the more days it's taken the likelihood of having side effects is lessened. I take 6 weekly, just not MTX day, & I'm just a little more tired the day after & have a little less appetite. I'm able to take higher doses on injections too because rather than going through the digestive system it goes directly into the bloodstream. Eating a diet rich in folate also helps as does drinking plenty of water & eating more bland food on MTX day. Ginger can help as well many say.
I hope you can get over this because for many it is a good DMARD, 8 years for me now where others have failed. It does sound as though the nauseous feeling before taking them is a psychological problem, actually fearing what would follow. I used to say I call it my antidote it works against the disease so well. Of course there are other DMARDs, you could discuss them with your Rheumy or nurse, unless of course you've gone through all your options.
The trial was about 10 years ago now. Can't remember exactly but we had to mix stuff together and make up a syringe so it was a bit of a process. It wasn't even that I was injecting Etanercept - I found out after, I was injecting the placebo!
I admit I don't take my folic acid enough. Maybe that's why. I sometimes forget to take it at all. I have 3 lots of eye drops to take as well and I usually do one of those in the morning with the Lansoprazole and thyroxine.
My initial MTX dose was 25mg. It gradually went down to 10mg then up to 15mg. At first I was OK taking it. At one point I was even taking it as one huge tablet of 10mg. But then I realised that was making me gag so I asked the GP to prescribe the 2.5 tabs.
I usually take them all at once in the evening to get it out of the way. And I started cutting up tiny pieces of chocolate or cake or something to hide each tab in so I could swallow it easily. But it didn't stop the nausea. In fact, I started feeling nauseous just looking at the rest of the chocolate bar I hadn't needed to use.
I've actually just started a sugar reduced diet as recommended by my dentist so won't be buying any more chocolate to use! I'm interested in the pen though. I think I'll ask about that at my next appointment. A quick jab with a pen I think I might be OK with.
Please do remember to take your folic acid, it can make so much difference. If your Rheumy recommends it every day except MTX day try taking it with your other morning meds, it may serve as a reminder. There's no mixing subcut MTX here any more, or rather I've never needed to, I've always had either prefilled syringes, (no fixing of needles or drawing up the med) or the pens. They are far safer, both dosage wise & there are no needle stick injuries, especially if you've rubbish hands.
This tells you all about the pen, when you're feeling ok! There's an instructional video you may (or not) want to watch too metoject.co.uk/patient/meto...
Morning Richgirl. You'll have read it's prescribed with methotrexate. This is because whilst MTX is a comparatively mild immunosuppressant it's also an antifolate, it can't determine which are bad cells (this is why at larger doses it was first licensed as an anti-cancer med & why we take it, to work on what's ailing us) or which are good ones. Because it's not selective it inhibits the metabolism of folates, one of the Vitamin B's which are necessary for reproduction of healthy cells, or DNA. So basically if we don't replenish what is lost by taking folic acid we can in effect have med induced folate deficiency. Typically this can show itself as the side effects we relate to MTX.... mouth sores, sore tongue, gastro problems, fatigue, rogue liver results & because it's an important part in the reproduction of red blood cells, it can result in anaemia. This is why whether you have RD or not if bloods show you're anaemic usually one of the first things prescribed is folic acid, to see if it's simply folate deficiency. So, whereas in high dose cancer treatment they have to have a rescue treatment of folinic acid straight after treatment to deminish the effect on healthy cells we take folic acid to ease the effects low dose MTX has on healthy cells.
I hope this reads ok, it's one thing knowing & another thing getting it across in the mornings! If it's as clear as mud or there's something needs clarification just say.
thank you very much. That's very interesting. I had no idea. I understood you very well. Thank goodness for science to have figured out all these things to help people. Also thank God for you & all the other wonderful people on this forum. Taking your time to help people. I've read through all your notes & letters & I just want to thank you for helping everyone. I hope you have a beautiful day🌻
Aww thanks RG. That's what we're here for to help, support & share what we've learnt over the years of having this disease. I was fortunate, my first Consultant gave me lots of homework knowing I wanted to understand my meds & educate myself in my new condition as I was quite clueless as are most of us when first diagnosed. I had a basic understanding & access to healthcare practitioner sites through my last position at my GP Practice before we moved to Spain so he gave me others specifically Rheumatology related.
I hope my previous posts help too, please feel free to peruse any time! 😜😴
Thank you very much. Yes I will be calling upon you. Until I got on this forum I never met so many people living in different parts of the world. How lovely to live in Spain.🌻
Sorry, my mistake. We're back in the UK now, 4 years next month. We lived in Spain 11 years & I was diagnosed there hence mentioning about first Consultant.
That's ok. My mother was a school teacher & when I was 12 she took a month off & took us kids to London & Europe. It was really neat. But I wished I would have been older to have understood different things better.🌻
Not stupid at all. It's a week, that's how MTX as a DMARD is taken from the start, weekly & then every week thereafter. The 15mg relates to tablets, the equivalent dose in injection form is 0.30ml but generally it's prescribed in mg's rather than ml's so there's no confusion of the dose. I'm currently on injections 17.5mg or 0.35ml.
FINALLY I UNDERSTAND! Thank you so much, nomoreheels! So I believe I could start it again at .35 and work my way up to .8 and beyond ( my phone will not let me do the milliletres abbreviation for some reason ).. In other words, I could start at 17.5 mg, instead of 25 mg? I absolutely love that drug! It lifted ALL my pain within 2 weeks ( it came back a few times, but not nearly as bad, and then gone completely.). My problem was, after 3 months, the 2 days "down time" was pretty severe and my hubby had to make sure I was still breathing in the mornings. PLUS it stopped my "out-of-control" sweating! ( a HUGE PLUS- I could actually leave the house- yea! ) But now that I've been on Cimsia, I know what real side effects are, and will plead with him to let me try MTX again! Whilst waiting for the Cimsia to get thru my insurance, I was on Leflunamide and HXC and my brain fog was so bad, and the sweating came back worse than ever. Then switch to Cimsia and added in DIAHRREA ( please excuse ), Nausea, ,completely numb arms and legs ( I kept them wiggling ). Night sweats, and the WORST brain fog ever!, ( on the plus side, I can't even look at food ). Then there's the creepiness ( to me ) of knowing I'm way more susceptible to infections, "could be" a higher risk of cancer, and any Sun could could cause the Lupus face rash, blah blah. Soo.o ......anything Not right about me starting on a lower dose of MTX? It knocked out all my pain completely,within 2 months and on Cimsia I have had very "slight" pain. Open for anymore suggestions and thanks again nomoreheels!
Well, if it was me in the same situation I'd certainly ask if I could re start it, no harm asking. I'd also question if it was prudent to start on a lower dose. Was 25mg your starting dose? If so that was quite high, more often we're stared on lower. As I said mine was 15mg, I was also taking HCQ 400mg. I think it's best to start low & increase incrementally until you reach the optimum dose. I've tried 20mg but it's clear my liver doesn't like it so I stick at 17.5mg & I'm prescribed another DMARD, currently LEF.
I'm pleased MTX works well for you, it's been my best med & I really would not be happy if my body determined I wasn't able to take it any more. Just a word of warning though, MTX can cause sun sensitivity, just so you're aware.
I don't know know what caused the nausea before your injections on the trial (pain from the injection? Side effects?) but the MTX injections using the pen are so so painless. I did them for a year and they were easy and really did not hurt. (I have other injections that do sting so was very cautious beforehand.)
I don't think MTX comes in any other form but tablets and injections for adults.
In the end I had to come off the MTX but it wasn't due to the injections themselves!
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