I cannot bear the nausea anymore….: Hello everyone and... - NRAS

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I cannot bear the nausea anymore….

Jungle5000 profile image
75 Replies

Hello everyone and thanks for running such a wonderful support group 😊! I am an Aussie but find that this is the best online help that I have found.

I was diagnosed with inflammatory arthritis at the start of the year and have been on MTX ever since but I can’t seem to get away from the nausea it causes. I feel like I am constantly suffering from morning sickness (all day). It’s relentless. I take folic acid every morning even MTX day but nothing helps. I’m on MTX injections as I have always had a sensitive stomach and figured that they would be better but I am at my wits end. I’m almost ready to go back to tolerating the joint pain over this.

I have tried more food, less food, restricting dairy , more dairy, etc, etc. I eat a good healthy diet - little processed food and lots of fruit and veggies plus protein as well at most meals.

please help! I’m ready to chuck the MTX in the bin and go back to hobbling. At least I didn’t feel as though I was going to throw up all the time. Oh - I’m also a teacher so I deal with teenagers all day too 😳

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75 Replies
virtualreality profile image
virtualreality

That sounds so stressful, and you've already done so much to try to mitigate the nausea. Is there a possibility to go back to your rheumatologist to discuss this and see if there are any alternatives you could try? It might even be possible to try a reduced dose of the MTX and add something else in alongside - often sulfasalazine, hydroxychloroquine and leflunomide are considered as first-line options for inflammatory arthritis so hopefully there is something that would be suitable and offer you a better cost/benefit balance. Wishing you all the best, it can be a very tricky balance to find, especially in the early days with IA.

Jungle5000 profile image
Jungle5000 in reply tovirtualreality

Thanks so much for taking the time to respond 😊

Yes, I think that’s what I need to do. I sent the rheumatologist an email as he is hard to book an appointment with but very approachable! I’m sure that I can sort something out but needed to have some ideas from the experts here.

Thank you for your experience and help

Kate

virtualreality profile image
virtualreality in reply toJungle5000

Fingers crossed he can get you into an appointment soon to discuss further. It definitely sounds like you've tried everything you possibly can, so a change in medication could be the way forward. Please let us know how you go!

Jungle5000 profile image
Jungle5000 in reply tovirtualreality

An appointment sorted for Friday 😊

virtualreality profile image
virtualreality in reply toJungle5000

Fantastic! I hope it results in a plan you're happy with.

Sunflower1921 profile image
Sunflower1921 in reply tovirtualreality

Good morning, I've had inflammatory arthritis since 1990s the only medication that has calmed down the Inflammation is prednisolone I think it's the best drug to quickly bring down the inflammation so you can live with less pain. You need to see a rheumatoligist to discuss your options. I'm allergic to so many drugs which cause horrible side effects it I m ok on prednisolone normally.hope you get sorted soon I feel for you.xx

Amnesiac3637 profile image
Amnesiac3637

Go back to your doctors and tell ‘em about it. I had that foul nausea and other side effects from MTX for four years (tablets and injections) and finally rebelled. Got my sanity back after I stopped it and went onto something else which I now can’t remember as it was years ago. There’s loads of drugs out there now which are much more targeted and cause fewer, if any, side effects these days.

MTX is first line, go-to, cheap therapy for RA and works for many but when it doesn’t and the side effects are worse than the initial problem it’s time to change. You don’t have to accept something that doesn’t suit you and it’s your body that has to suffer the consequences of it so please do yourself a favour and have that discussion. Very best of luck and you’ll find something that suits you eventually though sometimes it’s a slow old process.

Jungle5000 profile image
Jungle5000 in reply toAmnesiac3637

You did remarkably well lasting for 4 years - I think that I would do myself in before then. It is just exhausting! Thanks for your support and for sharing your story too. I’ll go back and see. I’d really rather be on paracetamol than this.

Cheers and thanks again

Kate x

springcross profile image
springcross

Hi Jungle5000, welcome to the forum. Have you asked your GP or rheumy about an amtiemetic? It may be worth trying.

Jungle5000 profile image
Jungle5000 in reply tospringcross

Thanks springcross - I certainly understand where you are coming from but I’m reluctant to take a second drug to stop a side effect from a first drug. I would prefer to swap out the MTX and am hoping for advice as to what might be a better option.

Thanks for the suggestion though

HollyDaisy1 profile image
HollyDaisy1 in reply toJungle5000

I was on methotrexate for several months but couldn’t bear the nausea and fatigue. I tried a few other dmards but am now on Benepali which I find has little or no side effects. I would definitely recommend trying something else. Good luck with the search.

Oxfordboy2 profile image
Oxfordboy2

Hi,I have been on methotrexate and nothing else except folic acid for the last two and a half years for GCA/LVV.For the first 6 or so months I had no MTX side effects before they kicked in.The worst ones were fatigue and like you very bad nausea.I read through the alternatives but they all had similar or worse side effects.I take mine in tablet form and used to take it straight after breakfast around 8.00am.12 months ago just by chance I had an early morning blood test and thought I will take it when I get back.The later time was remarkable and I instantly lost the nausea feeling.I have continued doing this taking it between 10.30 and 11.00am .I did wonder if the drug didn’t sit well with milk or fresh orange juice I have at breakfast but by changing my time it has made such a difference.I have other side effects but was so glad to loose the nauseous feeling.

Jungle5000 profile image
Jungle5000 in reply toOxfordboy2

Hi Oxfordboy2

Thanks for taking the time to reply! That’s really interesting about the time isn’t it. I take my shot at 5.30 pm on a Monday evening as find that it stings for a bit and it’s generally a time where I am able to be alone before the evening mayhem hits at home. Having said that it is now 6.50’pm on Friday evening and I still feel ready to be ill and I haven’t even had a drink! Oh well….

Thanks again for your ideas!

jojoishere profile image
jojoishere

Morning jungle,I was exactly the same as you on methotrexate Injections, nausea, headaches, literally felt like that at least 4 days a week until I couldn't cope with it anymore.

I lasted just under a year and my consultant took me of it, the thought of it turns my stomach.

I'm now on Adalimumab (imraldi) a biologic. I've had zero side effects been on it nearly a year, I still have mini flaire ups, and bad days, but I can still function.

I could barley move off bed some days (don't no how you coped with teenagers) I hope they change it for you, good luck x

Jungle5000 profile image
Jungle5000

hi Jojoishere

Yes, this is what I am hoping. Maybe a biologic. If not one of the other first line drugs perhaps?? Not sure how difficult it is to get put onto a biologic in Australia.

I’m very pleased to hear that you are travelling so well now - I hope that continues for you indefinitely 🥰.

Thanks again for your help

Kate

Doggo2 profile image
Doggo2 in reply toJungle5000

Hi Jungle 5000

I too am in Australia.. when first diagnosed I couldn’t walk, cut up food, hardly eat. My Rheumatologist started me on mtx with hydroxy

and then after the 6 months was up straight onto a Biologic. It is not difficult to obtain a Biologic here, but they have to wait 6 months to apply for one and have to assess that the cheaper alternative of mtx was not working because of government regulations.(Cost!)The Biologic was a great outcome for me alongside of low dose mtx. So tell your Rheumatologist that the Mtx is Not working or an option for you.

Wishing you well and hoping you get a better outcome.

Jungle5000 profile image
Jungle5000 in reply toDoggo2

Hi Doggo2

Thanks for adding this information for me. It certainly sounds as though you were a lot less well than me. I’m not sure that wellness wise I’d qualify for a biological but I’m certainly not tolerating this MTX. I’m fortunate in that I do have a wonderful rheumatologist who is very approachable and not at all scary like some seem to report. I will ring his rooms first thing tomorrow and see what can be arranged. I know that I will be in tears before I begin speaking so he will know something is up😢

Thanks again for your support and help xx

Doggo2 profile image
Doggo2 in reply toJungle5000

Hope all goes well for you. I know how distressful it is!🍀

jackNruby2 profile image
jackNruby2

I really feel for you, I was diagnosed 14 years ago and there are still places I can't visit because of how bad I felt. In my case the nausea lessened a bit as time went on and each time the dose was lowered I felt better. My son in law has MXT injections because of the nausea, maybe that is a solution for you?. I am on Benepali and a low dose MXT.

Take Care

Jungle5000 profile image
Jungle5000

thanks but I am already on mtx injections as I have always had a sensitive stomach 😢

medway-lady profile image
medway-lady

MTX didn't make me sick but it felt like being set on fire and my hair fell out in clumps. It was stopped straightaway and I then was prescribed LEF. That changed my life after initial side effects the RA just disappeared. Not cured but in remission for years. It doesn't suit everyone but there are other medications to try. It was stopped because of an AKI which was unrelated and then AZA just as good. So my advice would be go back to Consultant and say had enough please can I change. Good luck x

You have given it your best shot so tell your GP, and your Rheumatologist that it is not for you. I have had RA for over 40 years. I could not tolerate MX so was given alternatives. I do have deformed hands and feet, and possibly the deformity would have been less if I had taken it. All RA meds have side effects but hopefully you will try one you can tolerate more. What suits one person might not suit another.

whitedog profile image
whitedog

I stuck with MTX for 10 years somehow. But I had to stop eventually as my mental health was taking a dive. Ditched the tabs and then the Metoject pens and switched to sulfasalazine.

Upset guts for a couple of weeks but fine after that - no nausea at all. Only now, after 6 years, have I had to try infusions as they're no longer effective on their own.

Deeb1764 profile image
Deeb1764

I was awful on MTX pills and injection but keep speaking to your RA team as there are many more medication’s available. It took me 5 before I found the one I could tolerate so I had to keep getting back on the horse even when my head screamed NO!

bpeal1 profile image
bpeal1

As everyone else has mentioned it’s definitely worth contacting your rheumatology team to ask for a medication review, there are plenty of other options. In the meantime look at the medication page on the NRAS website so you have some information about what the options are when you get to speak to them.

nras.org.uk/information-sup...

Jungle5000 profile image
Jungle5000 in reply tobpeal1

Thanks everyone for your overnight responses! Yes, it’s clear that I have to go back and see the rheumatologist 😳. He is just lovely and will no doubt be horrified that I have left it this long without saying anything. I am beyond grateful to you all for your advice and support with this matter - thanks for taking the time and effort to respond. I am not sure what the situation is here in Australia re changing meds but I guess I will find out. Thankfully I don’t have to deal with insurance companies like in the US as it is more like the NHS here 😊.

It’s a beautiful spring day here - something to be grateful for!

Peacox profile image
Peacox

I’m in the same boat. So I send lots of empathy.! Three years of it. It means I live a very very limited life & will sometimes actually miss an injection because I can’t bear it anymore. I’ve spoken to the consultant many times but he ignores me — I’m in the process of changing consultants as I’m so unhappy with the care I’m getting. Anyway, I’m watching this conversation with interest. I feel your pain, I really do.

Jungle5000 profile image
Jungle5000 in reply toPeacox

Sorry Peacox - I somehow missed your reply as was using my phone. Apologies for being rude. I seriously don't know how you have survived three years and I fully understand how you would skip injections. I would definitely be looking for a new rheumy - at least mine is lovely and has stated if this doesn't work we try something else so I know that he is open to other possibilities. I guess part of our make up is that we have to "soldier on" but there comes a time when enough is enough. You deserve a medal though 🎖️

aliplayspiano profile image
aliplayspiano

I sympathise! When I was first diagnosed 14 years ago I was put on mtx, sulphasalazine and hydroxychloriquine triple therapy. After about 9 months I stopped taking the mtx because of how rubbish it made me feel. I did ok on the other two for several years until the sulpha started affecting my white cell count. After a short time on leflunomide which didn’t really work apart from causing me to lose a lot of weight! I was put forward for a biologic. It has made a tremendous difference. It is usually recommended to take mtx with a biologic but my consultant told me he had selected tocilizumab because it was one of the better ones to take without mtx. Do speak to your rheumy, as lots on here have said, there are several alternatives. Hope you get sorted soon.

Jungle5000 profile image
Jungle5000 in reply toaliplayspiano

Really interesting. Thanks Aliplayspiano! I so don’t want to have anything to do with MtX anymore 🤢

ruth_p profile image
ruth_p

When I was younger I couldn’t tolerate the mtx because of the nausea it caused me, even with an antiemetic. I was switched to leflunomide which I found much better. I didn’t have any side effect from it at all but obviously we are all different. I hope your rheumatologist gets back to you soon.

Jungle5000 profile image
Jungle5000 in reply toruth_p

Thanks RuthP - fingers crossed that the office is open tomorrow and he isn’t playing golf 😊

ABwn profile image
ABwn

I would definitely go back to your rheumy to discuss. As someone else has said, there are many more medications these days to try. Good luck on your journey.

Jungle5000 profile image
Jungle5000 in reply toABwn

👍

Bunny_cant_hop profile image
Bunny_cant_hop

Hi, so sorry you've been feeling unwell. Constant nausea can really drag you down. I haven't time to read everyones replies so maybe someone has already made this suggestion? A few years ago my friend was going through chemo and it made her very sick. There had been a radio 4 program about the benefits of real lemon lemonade for quelling nausea because of its affect on the stomach. So I bought her some and she found the results amazing. So I kept her supplied. When I was carrying my three children I had hyperemisis very severely but didn't want to risk anti nausea drugs. So I tried a few different things - I didn't know about lemonade back then - such as: nibbling on arrowroot or ginger biscuits; sucking crystalised ginger; mint/ ginger tea; small regular meals/snacks; flat cola ; ice ; mints. By giving stomach acid something small and plain to work on it helped it to settle. I think the real lemon juice lemonade helps to change the stomach acid. You could also try asking for some anti nausea medication. Your pharmacy might even be able to recommend a travel sickness tablet.

Hope you feel a bit better soon.

Rachel x

Jungle5000 profile image
Jungle5000 in reply toBunny_cant_hop

Thanks Rachel for taking the time to respond! Yes - I have been living on lemonade and gum as they are the two things that help me with the nausea. 🤢 what a great life!!

Kati66 profile image
Kati66

Hi Jungle,

Welcome to this lovely and supportive group. I totally understand the issues with MTX as I was on it for 8 months at the start of last year. It made me really nauseous as well and I felt like had a bad hangover feeling most days! I went back to the rheumatologist who put me on hydroxychloroquine and Leflunomide, which has been great, no side effects at all and it seems to be working 🤞🏻🤞🏻🤞🏻. Working as a teacher must be stressful too, so it sounds like you might need another medication. MTX works really well for many people and gives them a good quality of life. My hubby is on it for psoriatic arthritis and has been on it for many years. Hope you are able to sort this out with your rheumatologist soon. By the way, I used to live in Australia (Brisbane)

Kati xx

Jungle5000 profile image
Jungle5000 in reply toKati66

Hi Kati

Thanks for your response - so glad to hear that you are doing better now that you’re off the MTX. Thanks for sharing your experience!

Rusticgarden profile image
Rusticgarden

Are you on much higher amount of folic compared to methotrexate? Also do you inject at night , that helps some

Jungle5000 profile image
Jungle5000 in reply toRusticgarden

Hi Rusticgarden

I’m on 20mg of MYX and 5 of folic (which I take each day other than the MTX day) .

I take the shot at about 6 pm. If I take it later I find that I can’t get to sleep unfortunately.

Thingybob profile image
Thingybob

I have total empathy. I am in the same predicament as you. I have been on mtx injections and sulfasalazine since 2018.. nausea and brain fog all day the next day, but only one day luckily. It must be awful to have it everyday .I have missed a jab occasionally just for a break from it. I was also a teacher before retiring sp I take my hat of to you .I have discussed swapping to another drug with my rheumy but mtx has me in remission and I not keen to rock the boat. I also take other meds for other reasons and so everything may be upset by a change.!

Maybe you could ask for an anti dickness tablet ? I have tried several over the years and some help a bit. Lots of fluids all day before and the day after , a carbohydrate high meal before my injection, and injecting in the evening soon after my meal help a bit.

I too may ask to change drugs as the thought of feeling sick even one day a week forever isnt appealing .

Sorry forvthe long post , meant to be supportive and wish you all the best and hope you get sorted soon. 😊

Jungle5000 profile image
Jungle5000 in reply toThingybob

Thanks Thingybob

I wish you all the very best also 💗

oldtimer2 profile image
oldtimer2

Most people take methotrexate without problems, but some do really have difficulties. Sounds like you're one, as I was. I had great problems persuading the rheumatologist to do anything about it, although they did change me to the injections saying that would sort it out. It was only when the dentist insisted that I should find an alternative - and was prepared to put it into writing did they listen. Unfortunately I also I had problems with some of the alternatives (allergic reaction to sulphasalazine & hydro, blood pressure problems with leflunamide) but I've been on azathioprine (which is cheap) without problems.

Jungle5000 profile image
Jungle5000 in reply tooldtimer2

Interesting that a dentist got involved....How did they sway the rheumy oldtimer2?

oldtimer2 profile image
oldtimer2 in reply toJungle5000

I had enormous mouth ulcers as well as several other problems. All went away after stopping methotrexate.

WilfDog profile image
WilfDog

Morning Jungle5000

I totally understand your frustration, especially as it sounds like the methotrexate has helped with your inflammation. However, there are many other options for you to try and many DMARDs to choose from. Methotrexate is generally the first choice for rheumatologists maybe due to their low cost.

Although all DMARDS have side effects if you read about them in the National Library of Medicine, it states

Although most conventional DMARDs have similar adverse effects, there are several adverse effects unique to each agent. Hydroxychloroquine, is unique in this respect as it has the best safety profile out of all the conventional DMARDs

The website is ncbi.nlm.nih.gov/books/NBK5...

I would request an urgent appointment with your rheumatologist to discuss alternatives and state that you have read the above information. Go armed with your concerns and what you want out of the appointment.

It sounds like you are on it regarding lifestyle choices and diet. I take complementary meds now, too. Since 2017 I've used doTerra Life Long Vitality, which has helped considerably and been effective alongside the prednisolone and etanercept biologic. It contains a tummy tamer, but I now also use doTerra Zengest capsules for my stomach instead of lansoprazole.

I hope you get sorted and find the meds that suit you so you can have little inflammation and no nausea.

Good luck! xx

Jungle5000 profile image
Jungle5000 in reply toWilfDog

Hi Wilfdog

Thanks for the response and ideas. Much appreciated 🥰

fred42 profile image
fred42

Just a brief comment as most of it has already been said.I too struggled with MTX for years, constant feelings of sickness and also other digestive problems, I had tried all the other Dmards.

My Rheumy moved me onto a biologic, took a while to find the one that worked with no adverse side effects but Cymzia did it and has been keeping me well for nearly 3 years now without any other medication.

That is my story - don't give up just ask your Rheumy.

Jungle5000 profile image
Jungle5000 in reply tofred42

Thanks for your support Fred42 - will do. Waiting til the rooms open this morning and then will be on the blower!! 👍

Vixen2 profile image
Vixen2

Hey Jungle5000. I’m now 53. I’ve had RA since my 20’s. I’ve been having Infliximab infusions every 6 weeks at my local hospital for the past 20yrs. At the beginning. When i was first diagnosed. I was on loads of meds. Seriously strong meds. Plus steroids. I felt like a 90yr old when my life was just starting. My then husband became my carer. Literally overnight! It was an awful time. I had 2 walking sticks. He had to help me to the bathroom. The pain was excrutiating. Plus i felt sick. Constantly. The first 3/4 months especially. Plus the fatigue. It really was an awful time. I was told i would feel the nausea for quite a while. Just until my body got used to the meds. Here’s a tip:

I found mint eased my stomach. Sugarfree gum? Or maybe try peppermint tea? That can ease the symptoms. Do you use omeprazole? Or maybe Rennie tablets? Maybe they can be a stop gap until you see your rheumatologist. I’m sure you can all find a compromise. Good luck. X

Tealblue2 profile image
Tealblue2

I can completely sympathise with you! I was exactly the same when I was on it. It was horrendous. It also made me depressed.

I ended up coming off it because I saw the rheumatologist and it wasn’t working and I wound up in hospital with heart issues. Please go and see you rheumatologist and make your case! But be aware they have to leave it 6-9 months to prove it’s not working to move you on to biologics. Because they have to prove it doesn’t work to apply for funding.

But although I’m now on biologics and am so much more well than I have been, I’m still trying to find the magic formula to make me fully well. It’s a long road.

Good luck!

Jungle5000 profile image
Jungle5000 in reply toTealblue2

Hi Tealblue2 - thanks for that information. But really- 6 to 9 months? Arghhh! I think that I have only done 5 🤢. Can I just pretend to take them for the final month? YES. It is playing havoc with my mental health too. Quite depressed but is that any surprise?? Thanks for letting me know that I am not alone 💗

Tealblue2 profile image
Tealblue2 in reply toJungle5000

I phoned the nras helpline in desperation and they were full of really helpful information. I would suggest anyone in the same situation does the same - well worth it.

Jungle5000 profile image
Jungle5000 in reply toTealblue2

Unfortunately I am in Australia though.....don't have access to the nras hotline and I don't think that we have an equivalent

SmithM52 profile image
SmithM52

hi I too had problems with severe nausea both with tablet form & injections of methotrexate. As it was 27 years ago there weren’t any alternatives for me so like you I persevered & soldiered on teaching & raising a family. It was grim but now there are so many alternatives out there you really need to advocate for yourself & your non existent quality of life & the fact that you have such a lot to give via your teaching. Before I eventually managed to get on to a variety of biological therapies prednisolone orally & injections helped keep me mobile & helped with the pain & stiffness. I have finally found the magic potion for me in the form of Jak inhibitors. They have been amazing..no side effects & a once a day tablet. It’s really trial & error to find what works for you. But if you are prepared to keep taking this medication they will be happy as it’s the first line & cheapest option. It can work well for some people but I found it’s actually given me long term liver damage. So don’t persevere with the nausea as it can cause you problems in the future. Good luck with your journey. All meds have a list of possible side effects so you just have to keep trying until you find one that works for you. Took me 25years! But there weren’t many options back in 1997!

Jungle5000 profile image
Jungle5000 in reply toSmithM52

Thanks SmithM52

The new JAK inhibitors sound really interesting. I don’t know if you have to try a biological before you can try these?? I guess another question for my rheumatologist! I hope that they continue to work a treat for you and I do like the sound of a tablet rather than another injection or infusion 😊. I did not think that it would worry me but I am surprised by the fact that it kind of does 🤢

Orangutans profile image
Orangutans

are you sure you have to take folic acid every day? I was on methotrexate for 30 years but only had to take folic acid once a week. Please check with your doctor. I came off methotrexate because of awful headaches. There are so many other drugs and biologics you can use. Don’t give up. I got it at age 25 and am.now 79 and still enjoying life. Good luck

Boxerlady profile image
Boxerlady in reply toOrangutans

I started on one a week and it was increased to six days (not on Methotrexate day) to help with side effects which is pretty common here in the UK. In the USA they do take it every day. Great to hear that you've coped successfully with RA for so long 😁

Jungle5000 profile image
Jungle5000 in reply toBoxerlady

Thanks for the query. Yes. I was on one a week and had it upped to every day other than MTX day also.

Green230461 profile image
Green230461

I had the same! They changed my drug to humira much better And I have an omeprazole tablet for my stomach- all good💁🏻‍♀️

Jungle5000 profile image
Jungle5000 in reply toGreen230461

Great - this what I am wishing to hear! Thanks so much Green (plus too many numbers to write!!) 😜

Green230461 profile image
Green230461 in reply toJungle5000

I was taking humira for nine years then it started to wear off your body just gets used to the drug and stops recognising it. So , on to the next - it is a merry go round of delights! I am still on omeprazole for my stomach added to sulfasalazine two tabs and baricitinib one tab. Occasionally have a flare one every ten months or so but all good. The docs have a huge arsenal of cocktails at their disposal now. So jump on the carousel and good luck 🤞🏻

Jungle5000 profile image
Jungle5000 in reply toGreen230461

Thanks for the update. Wow - you must rattle as you walk!! I must admit that this is my concern as I already take another couple of tablets for other health issues so I don't want to be a mobile pharmaceutical advertisement. I wonder if once you get on this train there is little chance of getting off and this also concerns me. I understand that it is a degenerative disease but I would like to know about the cost vs benefits of all these drugs. If only we had a crystal ball....

Green230461 profile image
Green230461 in reply toJungle5000

The good news is that I am still walking! Without drugs the chance of a wheelchair was high. So, join the RA WARRIORS. The rheumatoid docs are a clever bunch and never stick you on something to harm you however they are serious kit. In uk you can go on gov .uk and find out about all drugs. I am sure your government will have the same. Find out as much as you can but remember everyone reacts differently to these drugs but once you find the combination that suits you can get back to your true self with the future a bit brighter. Keep fighting on, warrior !

Belleo profile image
Belleo

I’m also from Australia and have inflammatory arthritis (psoriatic). I believe once you have unsuccessfully tried 2 DMARDS in Australia and you’re under the care of a rheumatologist you will be considered for biologics. I have been on Simponi and hydroxychloroquine for a number of years with few side effects and reduced inflammation. I need to see the rheumatologist for a review and blood test 6 monthly but initially I think that it was more frequent than that. Maybe you could get your GP to contact the rheumatologist for you to get a more urgent appointment. All the best.

Jungle5000 profile image
Jungle5000 in reply toBelleo

Hi Belleo - thanks for your reply. Hmm, I liked the previous one better. Having looked at all the other DMARDS a first listed side effect also seems to be nausea so I am not really pleased at the prospect of moving from one brand of nausea to another. Still, I will make an appointment and see what the big guys says! Thanks so much to you, and everyone, who has taken the time to care and share. It means a great deal. I will update after I have been and seen the rheumy!

Kate 🩷

MrJinks512 profile image
MrJinks512

I take MTX from a Metojet Pen and I also get nausea. Somehting that helped me is so suck a mint sweet. It sounds stupid, but it does work for me. There's one here in the UK called Foxes Glacier Mints, I find they're the best ones. Like you, I also take Folic acid every day (Apart from MTX Day) and I sometimes wonder if that is making the nausea worse. If you look up side effects for Folic Acid, nausea is at the top of the list. I'm seeing my Neumy Nurse today, So I'll ask her if she thinks the Folic Acid might be contributing. I'm hoping to get switched to a Biologic, as I never really hear anyone say they get as many side effects from that. I hope things improve for you, It's really tough isn't it?

Jungle5000 profile image
Jungle5000 in reply toMrJinks512

Thanks for taking the time to respond Mr Jinx. I have not taken any folic acid for 4 or 5 days now and am not taking my MTX tonight so am feeling quite naughty. I have made an appointment to see my rheumatologist on Friday so it will be interesting to see what he says. I also agree that mint helps and chew mint gum to help with Sjogrens symptoms too. By this time (nearly 7pm) all I can do is either chew gum or drink soup. Lucky it’s winter!!

MrJinks512 profile image
MrJinks512 in reply toJungle5000

I did that a few months ago. I was on 25mg of MTX injection, and I was so fed up with the nausea. Exactly a week after my last dose, the nausea just stopped. So I had a whole week without it. Then the pain started again, so I paid a price for missing the week out. It's impossible to know what to do. I don't know what it's like over there, but here I'm lucky if I can see the Reumy Nurse once every 3-4 months. So you make a change, and you're stuck with it until you can go back. Good luck on Friday.

Jungle5000 profile image
Jungle5000 in reply toMrJinks512

I was really lucky and managed to get an appointment on Friday after ringing on Monday (I think someone had cancelled just before I rang) but I suspect that now I will never win Lotto because of that!! My next 'proper appointment' was not until the end of December 🙂

Mysti25 profile image
Mysti25

Hi, so sorry to read of all your struggles with the nausea. I've been on the injections over 10years now & still have occasions where the nausea is not great. I do find it is much worse if I don't drink enough water the day before though & I usually try and increase my water intake greatly both on the day & day after the dose & have my inj just before bed so I hopefully am sleeping through the worst of it. If apart from the nausea you feel methotrexate does help your symptoms overall it may be worth trying increasing your own intake further if not already doing so. Also you may benefit from discussing a change in the folic acid supplementation as there are alternatives for folate replacement as the idea behind it is to help with the side effects & inpartucular nausea and I believe some people benefit from taking a stronger form of this so I would certainly try & discuss your options further with your consultant as you have obviously tried really hard to deal with this issue for a long time. Our bodies and their reactions to things are all different so some people find their body will accept & tolerate these strong medications better than others. My rheumatologist told me before I started methotrexate that the first few months would be really hard going but once the body adjusts most of his patients tolerate it well...I went with that and he was right I had nearly a year of really struggling with nausea, dizziness, intense fatigue etc but with his support & trying different suggestions from those on various support groups like this I've found my way of adapting to it & though I still have my up & down times we have recently proved it does work in keeping my symptoms under control. If however you feel your attempts at tolerating this one aren't helping at all there will be alternatives available so do discuss with your consultant.On the subject of biologics they have been really game changing for me but I've had them alongside the methotrexate. I was on methotrexate over 5years and had tried various other drug combinations before it was offered as an option though & I have recently had to have a bit of a break from them as have had some anomaly in a blood test that needed further investigation. The side effects from all these things as you will know can have serious consequences so we do need to be fully informed and aware of all risks and benefits before agreeing to them & regular monitoring & discussions with a good understanding rheumatologist is essential. I hope you can find a solution to your nausea, it is in a way still relatively early days for you though you may feel having been on it since start of the year it is long enough but it does take time to find the right balance in the cocktail of meds we find ourselves on with these rheumatological conditions and you still do have other options to try. I can appreciate your reluctance to take extra pills as I am of a similar mindset, but we do sometimes need to accept taking extra pills to counteract side effects especially as these strong meds do often require that. The idea if swapping them out for something else once we are on these things though sometimes appealing at the time isn't always the right option for us as we then they all have similar or even worse side effects so don't rule out trying something simple like anti emetics first altogether, as you may find they will help and you would probably only need them for the first day or so after each inj and eventually not at all once it properly gets into your system...which can take a long time in some cases.... These are only suggestions as obviously as I said before we are not the same and our bodies all work & tolerate things at different levels....as always you should go with what feels right for you.

Sorry this is so lengthy but do take care & keep discussing things, we can all learn so much from the experiences of others and we only need to take and use what we find applies and may benefit us from what we see. We all need support at times and this is a good place to be as we can learn from people who really can understand what we are going through.🙂

Jungle5000 profile image
Jungle5000 in reply toMysti25

Hi Mysti25

Thanks for taking the time to respond and for the wise words! I do understand that each of the drugs has side effects but it is difficult to be rational when you feel like this 🤢

Mysti25 profile image
Mysti25

I can fully understand that feeling, it really does make it difficult to think rationally as it is so intrusive and severely impacts your whole quality of life. I have just shared my weekend with intense 🤢 as have just increased my dose after restarting it following the time off it due to needing bone marrow tests, hopefully mine will settle back down again soon though. I do hope you can sort something for yourself in the near future it certainly sounds like you have tried very hard to deal with it on your own.

SLEepyhead123 profile image
SLEepyhead123

Hi, I'm so sorry you are feeling so awful. I too struggled with MXT and I was on the injections which didn't make any difference. I did almost 2 years hoping it would get better. In the end my rheumatologist stopped it and prescribed Leflunamide tablets. I feel so much better no nausea at all. Please ask your rheumy what else you could try rather than suffer with dreadful pain. Good luck.

Jungle5000 profile image
Jungle5000

Dear All

Just a quick update….

Saw my lovely rheumatologist on Friday. Said “We definitely can’t have that! We have about 30 different drug options and we are only tried one so far”. He was very supportive, has put me on Sulfazaline(sp?) but also said that it will take some time before it kicks in. Worth a try. If it doesn’t work there’s still another 28 to try apparently.

Perhaps of more concern is that I have been off everything for nearly 2 weeks and I still feel nauseated so maybe I should not have blamed the mtx??? 🤢

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