Hi Abbie, of course we can help. Just hang in there because there are many members who can perhaps suggest more to you than I can as many are also on methotrexate injections. I was prescribed MTX at the start of my disease but in tablet form. What a shock for you at such a young age. I'm so sorry! Are you taking folic acid too? My suggestion would be to see your GP and if you can't get a Rheumy appointment for a while, your GP can telephone and speak to the Rheumy about your sickness with the drug. Others will reply to you, we will see what they suggest. Love and hugs. I know this is very tough. Xx

Hi so sorry you are suffering. I couldn't tolerate methotrexate either. I am on leflunomide 20mg daily and sulphasalasine 4 tablets daily two in the morning and another two at night and naproxen. Zap pain etc. I have just had cortisone injection which has helped. Don't give up they will sort something soon that suits u. Big hugs keep smiling x

That sounds so miserable, and well done for lasting on methotrexate this long.

I'm surprised that your consultant hasn't suggested liquid folic acid (which exists) or even more simply to crush a tablet between two teaspoons and then mix the powder with some food that you really, really like. Taking folic acid can really help with the nausea. Some people take 5mg a day.

Have you also talked to your rheumy anout adding in other drugs apart from sulphasalazine? There are several that could help control it a bit better. And yes they are tablets, but they could probabky be crushed too.

As even if you get to start the process for biologic drugs in January it can still take months to get approval. And sounds like you need something to wrok quickly for you right now.

Hi Abbie. Do sorry to hear about your struggles at the moment. I too experienced extreme nausea and sickness. Folic acid is the answer, insist on a liquid prescription to help you. Using the approach as to how this is all affecting and having a serious impact on your ‘wellbeing’ a powerful word that hopefully the professionals will sit up and take notice. Keeping my fingers crossed 🤞🏻that you will soon get help and support.

Hi Abbie, how long have you been on Methotrexate? Sorry you’re feeling so rubbish.

I was the same whether it was tablet or injection and no matter how much folic acid/ginger/remedies I had. Methotrexate and Sulph make me so ill... like having the most horrific hangover every day. I was diagnosed at 25 (now 43) and I’m not going lie it’s not a path without challenges but you have to keep pushing your Rhumy and GP. Don’t feel like you’re being a pain because if something doesn’t suit you they have to keep trying. You’re young and your joints need protecting so keep telling them how ill it makes you feel and that you can’t function on it. I understand that we need to give drugs time to get used to but you do not need to put up with it long term along with pain. Hope this helps a little? Sarah xxx

Hi Abbie, such a young age to have these problems, you need more advice from Rumy nurse or consultant, we are fortunate in this area as help is only a phone call away from advice,I may not get a reply the same day but within 2 days.

If you fit the criteria I have found that with Benepali and Methotexrate on different days they compliment each other so perhaps you may be able to reduce MTX, I think that the majority of MTX users feel the after effects like sickness etc for 2days after. So stick in there and see your specialist as some GPS are unable to give a prescription for Benepali owing to cost and I think that it has to be prescribed by a consultant, hope that you improve soon.

So sorry abbie to hear your news. I had trouble with mxt tablets tried sulfa.something! And another tablet forgotten name bad for stomach then changed to injections. Had nausea which is mostly ok now but gp gave me prescription for domperidone really good. Also have had folic acid tablets every day except injection day. Both are very small so should not be hard for you to swallow. Good luck.

Hi Abbie, so sorry to hear you are struggling but you have definitely come to the right place for advice and support. I too was diagnosed quite young in my mid twenties but had had various joint problems and septic arthritis when a child before that, although I am much older than that now I won't go into detail about my struggles because you obviously know this from your own but hang in there things will get better. It may take some time and some trials and errors but there are many more drugs out there now that can be tried and one of them will work for you.

I too found MTX made me very sick, tablets and then injections, which like you made me dread my injection day to the extent that i would be sick before doing it. I would be sick for 5 days out of 7 and eventually had to stop the injections and go back to tablets and take folic acid 6 days a week which made a lot of difference. I haven't been able to increase my MTX since so am now on Benpali too. The suggestion of crushing the folic acid sounds like a good idea if you can try it?

I really hope that you find some relief soon but don't give up and do keep badgering the rheumy's/GP etc but also keep in touch with us on here too for support from people who have all been where you are now. There's lots of good advice and ideas but if all else fails we are here for you to have a scream and shout and not be judged or dismissed. Keep warm and look forward to hearing how you are getting on. X

Folic acid liquid: drugs.com/uk/lexpec-2-5mg-5...

Definitely available!

Most of us have found that taking this every day except the day of the injection helps.

A lower dose while your body gets used to it might help - and covered with a steroid injection meanwhile to reduce the pain and swelling.

But you need to calmly record everything and nag gently your health team!

I would really think a young person like you, with long life ahead would get more help than you are getting Having you hang on to Mtx when you are so sick and when it's evidently not working just because there is some kind of 6m rule. In US you are moved to biologics after 3m of mtx not working and here in France if you have a hard time with mtx you can be moved to biologics even sooner. Sorry that rules trumph the patients wellbeing

If you are not getting help from the pharma side perhaps you could try to find help from the integrated med side where the approach is more holistic and you would get help with adjusting diet and perhaps try LDN which has helped many that have had problems with RA meds. I do hope you will find a solution soon and people that are willing and able to help you. Take care. xxSimba

Hey Abbie

I'm 23 aswell! Jinx!

So sorry to hear about what you're going through. It really does feel like the longest tunnel that you will never get out of, particularly when you're prescribed mtx and it doesn't work. I was on mtx, hydroxychloroquine, prednisolone, sulfasalazine (only for 3 weeks because it gave me massive headaches) and they just didn't work. Well, the steroids helped but nothing else made much of an impact. I wasn't able to trial biologics until I had 'failed' a methotrexate combination. So that was 7 months of horrible swelling and pain (and steriod injections into my ankles not wrists). I am still swollen and stiff and fatigued... but in less overall pain on benepali. The idea is that they will eventually find something which works for you. You seem to have quite aggressive onset like me. There are so many new medications out there and it's a case of waiting (which can be agonising) and keeping your fingers crossed that you get onto the right one before you start climbing the walls.

At first mtx made me very lightheaded and nauseous, but that passed after around 3 months. I hope it passes for you too. I am also taking folic acid 3x a day alongside it, though.

So good to hear from you and fingers crossed you begin to feel better

xx

Hi Abbie

I am on 20mg MTX (jab) and my mother-in-laws neighbour is like you on 25mg MTX (jab). She had to hit 25mg before she could get off steroids and get her arthritis under control.

However lucky her, she has never had a problem with MTX and only needs to take her folic acid 1 day a week!

It took me a good few weeks to get use to the MTX. I started having nausea issues from 15mg. After that my body finally accepted the MTX but I employ a number of tricks to keep me on track when it comes to the nausea.

1 - taking my MTX just before I go to bed

2 - having a VERY 'chillaxing day' the next day

3 - coffee helps me - just a couple of cups

4 - folic acid 6 days a week

5 - on the odd occasion now if the nausea is really bad I take anti sickness meds which I got the GP to prescribe, they take the edge off.

However all said and done I have never thrown up. Have you asked your consultant how long you need to persevere before they offer an alternative?

Oh Abbie, I'm so sorry you're not being listened to, or rather they're not acting upon your reporting of side effects, that's just rubbish & so unfair on you. As someone who's done well on MTX for a long time & just now starting to have a few niggles I can at least empathise a little, it's unfair your life is being impacted on so & at such a young age, when you should be carefree & out enjoying life. You've had them long enough now, time for a change but you'll need to be assertive, not always easy but it's become a real necessity.

My first thought before reading your replies, I've not been able to read them all so apols if anything's already been covered, was to formulate a plan, ask, no, request that as you tolerated MTX better at a lower dose that it is reduced the dose you felt OK on & another DMARD added. You have options other than sulfasalazine, there's hydroxychloroquine (which is available in liquid on special order from the manufacturer) & leflunomide (which I don't think is but do ask if it's viable). The most important thing is to get your RD under control so if your Rheumy isn't of the opinion these are options for you request they discuss the process & start fast tracking to an anti-TNF/JAK biologic at your appointment in January.

If you don't take maximum dose folic it may be increased, that is also available in liquid form, or ask if your prescribe an anti emetic. I take prochlorperazine but there are others even if the first one doesn't help enough.

You could try hot of cold on your worst affected joints, whichever you respond to best, or try them alternatively. If you're not prescribed an NSAID ask if ibuprofen or naproxen would be helpful (both available in liquid, or suppositories), or diclofenac (topical gel, liquid or suppository) is another option.

I really wanted to say that we support you, no need to feel as though you're on your own in this. It can be a bugger of a disease & so much more unfair when it happens young, the oldies amongt us have at least been spared it til later in life!

Keep posting, whether it's rant, rave or just have a moan, we'll try to help if needed, or we'll just listen whatever's needed.

Take care Abbie. x

Hi there Abbie, I’m 20 y/o and was diagnosed in July too! I’m on 25mg of methotrexate, table form, and I haven’t had any luck! I’ve currently had no positive effects from the meds and if anything, my arthritis has gotten worse. Unfortunately my arthritis is unpredictable with it affecting anywhere in my body, but mainly targeting both feet. This is my first time replying/writing on this forum so I’m mainly commenting so I can get advice too I think I’m at the same stage as you mentally as i am practically bed ridden at the minute and feel nothing but frustration! What supports do you have for your knees as I would be interested if I could try something new to help ease the pain for myself?

Also, when I’m having bad days with my knees, sometimes it helps if i switch from hot to cold packs every 5 minutes, it’s a bit excessive for only a tiny bit of relief but every little helps when your in agony! I know you’ve probably tried this but it’s a good excuse to sit down and watch some TV!

I hope you get some rest, whether from mental or physical pain!

Xo

Abbie know how you feel about the Methotrexate was so unwell with it too. Same with Leflunomide but worse it took so long to come out of my system. Was due to get a hip operation but had to cancel because I felt so bad. It was coming on to this site that kept me going and made me realise how this helps us to share things and get advise.

Hey Abbie - just remember what you are going through right now is not forever. You will get better. Contact your Rheumy and tell them you need to see them asap. I changed from injections to tablets. There are meds that can help with the pain you feel right now. Wishing you a very swift recovery. Hugs Hessie

Coffee can actually help with the side effects of mtx. Here is how the study was done.

atlasofscience.org/coffee-f...

testing

Abbie, the people here will always help you however they can. Finding this site and the wonderful people who contribute has changed my life. All you have to do is reach out.

Abbie, I am new at this too and it looks like it could take a year to figure out the right medication. Methotrexate is the drug and am getting weaned off Prednizone. The pharmacy said to take a Gravol half an hour before a full (meat, potatoes) meal, then take the MTX and so far it works well for me. Gravol comes in suppositories so you don't have to take tabs. If I was having trouble with tabs, I'd crush them without even asking anyone and drink plenty of water. But that's just my personal way to cope.

The stress I hear in your posts is a definite hindrance to your recovery and your professional people should know that and address it.

You need pain relief first so you can figure out your medication issues. Find a doctor who will actually help you, if you can.

God bless

Bless you Abbie, 23 with this shit disease, truly my heart cries for you. But keep your chin up girl you have people giving you correct and sound advice, try cold ice packs on the knees it helps me. I won’t add anymore as I would be repeating what others have advised 👍🏻👌🏻