Methotrexate injections

[Devoid]

Hi has anyone found they have been better with the injections when they felt awful on the tablets?

[Gaz227]

I hope you get lots of replies I am starting MTX very soon as I have stomach issues I am asking for injections rather then oral method , did you have problems with the oral tablets ?

[Devoid in reply to Gaz227]

Hi I haven’t had problems with the tablets as in gut problems it’s been more an increasing fatigue and difficulty getting about. For months I didn’t put it down to the methotrexate because I was just so I’ll . I have been on tocilizumab since November and it was once I started to feel better that I could see that I was just starting to feel good and mobility improved, took the weekly dose of methotrexate and I was weak again, initially for a day or two and eventually until perhaps the day before I was taking it again. I had a few weeks off it at the beginning of lockdown due to a dental problem and other than the tooth problems I felt so much better than I had since diagnosis. I was able to walk much better, fatigue wasn’t an issue. This obviously is just my experience and I know plenty who it works well for, but personally I would prefer to stay on a small dose of steroids if this is the only alternative

[PMRpro Ambassador in reply to Devoid]

I had exactly the same - none of the expected problems except hair falling out in clumps within days but by the second week the fatigue lasted 3 days and by the 4th dose I only felt human for the afternoon of the day the mtx was due! I'd said I would stop it for a working trip to S Korea - I'd never have got there if I had carried on with the mtx. It took about 6 weeks before I felt OK - but no, not trying that again!

[Devoid in reply to PMRpro]

Hi it’s just good to have someone who understands,,however much I try to explain to rheumatology nurse and consultant they just don’t get it. My husband says I walk differently when I have taken it, everything becomes so much effort. I started to feel better when I had missed 2 doses and by a month I was better than I had been since diagnosis. The mad thing is I have now had tocilizumab extended to at least April 2020 , what the nhs info says is to keep you out of hospital/ doctor surgery for the regular monitoring you will need after tocilizumab and then they need me to go in for the first methotrexate injection and then fortnightly bloods for 6 weeks. Surely this is defeating the object??!!!!

[PMRpro Ambassador in reply to Devoid]

I am lucky with my rheumy - he accepted straight away that it wasn't for me, despite the pred dose I need. But nothing would make me take something that made me feel worse! mtx made me feel worse than I EVER felt with untreated PMR, muscles and joints ached, hair fell out in lumps, the fatigue was unbelievable. I was hungry all the time and gained weight - never happened with pred. And I bruised. It was as if the mtx magnified the pred adverse effects!

I have to say - I don't know why they use methotrexate together with tcz, I'm positive that wasn't part of the clinical trial for GCA. I can see why they might use them together in RA - but RA isn't GCA.

[Devoid in reply to PMRpro]

I am considering just refusing it , originally he said that there was every chance I would be on pred indefinitely, but now seems adamant that I will be off pred and on methotrexate indefinitely. I think the main problem is that he hasn’t physically seen me since pred at30 mg and methotrexate at 25 mg , at that point I was very cushionold and could hardly put one foot in front of the other, couldn’t get upstairs without assistance and was basically housebound, I now feel well other than the odd blip and I’m losing weight and increasing my activity, so feel like I have a life , not how I feel on methotrexate when I quite often feel more tired in the morning than when I went to bed

[PMRpro Ambassador in reply to Devoid]

I was really Cushingoid on methyl pred - switching to pred helped but I credit cutting carbs wth getting rid of the steroid fat as it started melting away before switching drugs. But I'd rather look a bit Cushingoid and be able to function than feel as you obviously do on mtx. Of course - how much of the state you were in at 30mg pred was actually due to the mtx?

[Devoid in reply to PMRpro]

That’s my thoughts , I have had a real wake up call with the prediabetes diagnosis so have really cut the carbs and the weight is coming off, I think tomorrow I am phoning to cancel Wednesdays appointment. Worrying about it is doing me no good at all and I honestly think I have given methotrexate a good shot and it’s not for me. Thanks for letting me sound off , sometimes you don’t trust your own judgment but only I know how it makes me feel

[PMRpro Ambassador in reply to Devoid]

Sound off here any time you like - pm if you want to say something you don't want too public. Someone will listen, promise.

[MrsNails]

Hi, the theory is that because they bypass the digestive tract you should not get stomach issues ie nausea etc

I’m not sure how many on here are on MTX Injections but if you put it in the Search Facility you should get more replies in the RA Group.

Good Luck 🍀

MrsN

[Devoid in reply to MrsNails]

Thanks I will try that . I have started to experience nausea since drastically reducing carb intake, but it is the other side effects that bother me more, feeling totally wiped out, poor mobility and generally unwell, the rheumatology nurse as said some people don’t have the same problem with the injections, I can see the potential benefits for nausea etc but am yet to be convinced for what seems to be the effects of a buildup of it in my case

[MrsNails in reply to Devoid]

Hi Devoid,

How long have you been on MTX? When l first started it (2014) it used to wipe me out the following day, l took it on a Sunday so l just kept Monday’s free & gradually the feeling passed over several months but l never booked anything for a Monday, just kept it to do as l pleased.

I also developed nausea quite suddenly about four months after starting it, we were on a Cruise & the Sunday Evening Menu was an American Menu Version of MasterChef & as l read down the Menu l started to feel more & more nauseous 🤢 so l hastily left the Resturant!

For about the following month/six weeks l ate chicken most days or very light non greasy or aromatic meals & gradually it stopped.

You could try eating something before you take it, l always take it after my lunch & some people take it at night to try to help alleviate overwhelming tiredness/nausea.

There is a degree of perseverance with MTX but l was achieving the results the Doctors wanted ie dropping 1mg Pred per month, which continued down to 7.5mg when l had to stop MTX for Surgery & Chemo.

I’m on it again at the moment but struggling to reduce the Pred at this time, l’m waiting on Blood Results to see if anything else is going on ie a Flare? The reason l’m persevering with it is l’m feeling better ‘in myself’ l had a particularly good day yesterday 🙏🏼

Good Luck & let me know how you get on.

MrsN 🍀

[brynedinpad]

I felt nauseous all the while in tablets best thing when my rumy suggested injections . Tummy much better now

[Devoid in reply to brynedinpad]

Hi nausea hasn’t been a major problem for me.Its been fatigue that has got increasingly worse and I have now had 2 breaks off it and after missing 2 doses I feel much better