Methotrexate injections

[Maggie69]

I went to hospital to get my MXT injection yesterday (before I started to do it myself) they asked how I was getting on and I said not very well as I was feeling soo sick and fatigued the day after I got it and very anxious . So they asked if I wanted to go ahead with it and I said not really so they went and saw my rheumatologist and he said to stop until my review on 2nd September ( but I wakened this morning and my knees are so so sore) I’m on 17.5 mgs prednisone and have to reduce by 2.5 mgs every week NOW not sure if I have done the right thing 😢😢😢😢is there any other RA medications xxx

[helixhelix]

How many times have you taken it? I felt bad for the first few months, but then it wore off and now it is fine. It took me i to remission.

The other thing is what dose they started you on? Sometimes they start high which can be hard, whereas I started on a low dose and built up. And how much folic acid you take?

Some people just can’t tolerate MTX, but if you can it can be a great drug. I’ve been on it 11 years now with no problems.

[Maggie69 in reply to helixhelix]

I started on 10mgs tablets for two weeks but they made me feel sick then tried 10mgs injection for two weeks felt sick fatigued and anxiety ( I started on 20mgs of prednisone from 10mgs and now down to 17.5 mgs x

[Maggie69 in reply to helixhelix]

I folic acid 48 hours later x

[helixhelix in reply to Maggie69]

Talk to doctors about having more. I took it 6 days a week to start.

[sparklyshazza in reply to helixhelix]

Good answer!! There was really no need just to stop...

[ketiv74]

Hi Maggie, sorry you are hurting. Seems like pretty early for you since you started Mtx. When I started Mtx back in early 2019, I was super anxious too, had some nausea the day of Inj. However did not have any other side effects. The feeling of nausea went away after few weeks. But my RA pain significantly improved during that time. I was able to taper off steroids in about 3 months. Since then things have been stable. I was able to get back to normal life because of Mtx.

There are definitely lot of options out there but most RA drugs take sometime to work.

Is there a way for you to talk to your Rheumy team? May be they can suggest something while you wait to see them.

Good luck & Take care.

[Maggie69 in reply to ketiv74]

Oh gosh maybe I was too hasty 😢😢😢

[KittyJ]

Maybe you have been a bit hasty as you’ve only been on it a couple of weeks but I’m surprised the nurse didn’t try and help you rather than just asking if you wanted to go ahead. There are things they can do to help you and things you can do yourself to lessen side effects. Side effects can decrease the more you take it so it’s worth sticking with it if you can to ride this first period out. Also are you taking folic acid too? As HH has asked, we’re you on a high dose to start as I too started low and worked gradually upwards. There are other drugs, if you look at NRAS there is information about them all there.

nras.org.uk/product/medicin...

[Maggie69 in reply to KittyJ]

Hi I was on 10mgs and 1 folic acid 48 hours later

[KittyJ in reply to Maggie69]

I’m surprised they didn’t try increasing the folic acid, I take it 6 days (not mtx day) but it is a bit late now. I hope you get started on some different meds in September 🤞🏻

[Jayyyydddeee in reply to Maggie69]

Hi Maggie, maybe you could try asking to increase your folic acid. I have found that I was on 10mg of Mexothextrate and 5 my folic acid 2 days later and I felt really nausea I could not even eat for about 3 days after taking Mexothextrate however, the rheumatologist wanted to increase Mexothextrate to 15mg I explained I felt dreadful so they increased folic acid with it to 2 days after Mexothextrate I take folic acid 4 days in a row and I feel totally different. The side effects are not as substantial as there were. Maybe it might be worth asking if you could up folic acid alongside? I hope you get sorted bless you.

[Soundofmusic52]

I felt sick and fatigued for weeks but gradually things improved I thought they would of explained that I’m surprised you never gave it more time 😷

[Maggie69 in reply to Soundofmusic52]

No they didn’t explain and my anxiety was really bad 😢

[sparklyshazza in reply to Maggie69]

Im so sorry they weren't more helpful.

[Boxerlady]

If you were really anxious maybe that's why they suggested what they did.

When I started on Methotrexate tablets it affected my mood for a couple of days after I took them and when I reported it to the nurse, she increased my Folic Acid to 6 days a week which seemed to do the trick but I wasn't anxious when I saw her.

Maybe they felt like you needed a bit longer to get your head round things but it does seem unfortunate that they didn't take a bit longer with you to see if there was anything they could do there and then.

Maybe you should ring them on Monday, if only to check that you should continue with the steroid taper as you're not on any RA meds atm.

[Sheila_G]

I am surprised that your rheumatologist didn't suggest increased folic acid or at least explain that it can take time to settle. I think they were hasty not you.

[Egpa]

I had a lot of problems on the tablets and prednisone, switched to Mtx 25mg injection and 6 day folic acid. It took my 6 months to come off prednisone. Best thing I ever did. Mtx took a good few months to kick in but my joints are a lot better as long as I keep well hydrated the day before and the day of my injection it's not to bad just the odd feeling sick. Think you should talk to Rhumatolagy again and see what they can do to help. Good luck hope you get sorted very soon.

[Yasmine85b]

I'm on methotrexate tables, plus folic acid and hydroxychloroquine (not sure if the last one actually does anything)

at the beginning the MXT made me feel REALLY ill, I always has to be near a bathroom and I lost a lot of weight, but after a few months my body just got used it and we managed to up the dose to 20mg. any more I feel really sick again.

stick at it, you need to ride the wave at the start.

[RobertSmith28967]

Hi Maggie sorry to hear things are not great at the moment,I’ve been on 20mgs for the past 5 years and 15mgs up until 2 months ago and before it’s been a wonderful drug for me alongside Toximilunumb a biological drug,but I’ve had to come off both as my liver readings were up to 206 and kidney readings high as well,I’ve also been diagnosed diabetic type2 3 months ago but am feeling better and more energy since I came off them , it’s maybe possible that as I’ve went back to basics with what I put in my body food wise that’s helped as well,I’ve had dark times the last few years as well as I had to retire medically at 50,there is light at the end off the tunnel and I really hope you find it xxx

[Arlescote]

Hi Maggie, hope you are starting to feel a little better by now. I am on 20mg methotrexate injections and hydroxochloroquin and folic acid which I cope with but have had this supported with up to 20mg prednisolone which I have gradually reduced to 4mg. I was advised to reduce these by as little as 1/2 mg every six weeks as when I tried to reduce them by 2 1/2 it caused a flare up, so maybe reducing them more gradually would help, I hope so. I must be honest, I don’t feel great but I am coping and as my consultant told me ‘You will never feel normal ‘🙄. There are many other drugs to treat RA with its finding the right one for you which can be very hit and miss, good luck in finding the one for you.

[Hidden]

Of course there are more RA medicines - it just might take a little more time to transfer you to another. I did not tolerate MTX at all via tablet form and had to stop soon after starting and that was 20 years ago . It is not the same for everyone. Something will benefit you- it might be a bit of a rollercoaster depending on how you are with different medicines. Some work well to begin with or can work for a long time then suddenly you get a side effect. You will need to monitor yourself carefully whilst on RA drugs . Always ask the professionals for help and be very aware of your own self . Some RA medicines will work very well and others may not.

[sparklyshazza]

There are lots of different ones that can be used bit methotrexate is commonly front line. The body can adjust and adverse symptoms should settle. How often are you taking folic acid

[Evie3]

I have read previously that people take Metho tabs at night so dont notice sickness… that may have helped. There are a lot of RA drugs available now, thank goodness

[Maggsie]

Hi Maggie, the important thing is to manage your anxiety. One of the problems with all of the DMARDs and Biologics is that there are usually some side effects and these are very often magnified by RA sufferers in on- line groups but remember that you're only likely to read about those with bad side effects. I was lucky that when I started mtx I didn't really know much about it (it was many years ago) and therefore wasn't really aware of the side effects. 30 years later I'm still taking mtx and along with a JAK I'm doing well but I dont go on line and tell people how great it is.I do notice that some of us start to get anxious at even the thought of starting some of these drugs but my attitude has always been to 'give it a decent chance' and try to minimise any side effects by making changes to when I take the drugs and when and what I eat etc. I also don't think too much about the side effects but I do make notes of any changes that happen and then discuss with my rheumy.

I hope you can get sorted quickly as long term high dose steroids can be very damaging.

[Otto11]

Hi I’m sorry your struggling with it all. Methotrexate made me really sick in the beginning & would spend the following day just sat in the bathroom floor. It took several months until my body gradually got used to it & as there were few alternatives 25 years ago I had to stick with it. It worked really well for me & I was on it along with other meds for 15 years. Taking it at night before bed helps also I had folic acid the other 6 days. Injections are often better to tolerate than tablets.

All medication has side effects unfortunately but there are other options available x

[Happy5]

Ah the rock and hard place issue.When I first started MTX was on 20mg tablets folic on 1 day (not MTX day)

Was so nauseous the RA nurse said take folic 6 days (not on MTX day) also moved to

prefilled pen. Less effected by nausea, and fatigue, varies each week for no reason

I can pin down.

In my case I do it before going to bed to sleep through worse of the effects.

Food for thought I was warned by ones who had experience the first year s a roller

coaster for the body to adjust to MTX.

To answer your question a friend of mine with RA didn't respond to MTX in any form,

so they are putting him on different meds for RA. So yes other meds.

They tried him for 3 months on MTX which shows needs few weeks to be effective if it works.

Get all questions and info written down so you can discuss everything at your appt.

If possible try to talk to the RA nurse too they know about best way to care for yourself,

and how to achieve best way to relieve your symptoms.

All the best

[Knit12]

I used to take anti sickness tablets with my methotrexate. Sounds like you got very anxious about taking it. Never be afraid to try this might be the thing that makes you feel better. I would email rheumatology and say you have changed your mind and want to try it. Most rheumatologists have a list of drugs that you have to try before you move forward. I’m about to start my 10th drug in 2 years. I remain optimistic that this will be the one. Everyone experiences things differently so what works for one maybe won’t work for an other, but unless you try you will never know. Good luck x

[Vinca]

I self injected 25mg of MTX. Exactly 8 hours after the injection I take 20mg of leucovorin which is supposed to lessen the side effects. The other 6 days I take 1mg of folic acid. The key to my success is to inject the MTX just before bed on Friday night. That way I have Saturday and Sunday to rest up, if needed, before going to work on Monday. Since starting the leucovorin, I rarely experience severe fatigue or brain fog. I try not to plan anything for Saturday just in case I need to have a lazy day. Good luck.

[smilelines]

I came off of Methotrexate because I had stomach cramps and felt miserable emotionally. I am on leflunimide now. Side effects are nonexistent that I can tell. Maybe your instinct was right and you should try a different medicine. It is hard to know what to do!

[Maggie69 in reply to smilelines]

Thank you hopefully he will try me on leflunomide 😘😆

[angelika224]

I had to stop taking MTX because I've lost a massive amount of my hair even my eyelashes were falling out, MTX never ever again!!!!

[Maggie69 in reply to angelika224]

Ohhh gosh so sorry to hear that. Hope you were able to get something else sending massive hugs 🤗 😘