Where do you draw the line for side effects? - NRAS

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Where do you draw the line for side effects?

Gif1986 profile image

Was wondering how others decide what is still acceptable or not. At 10 weeks of methotrexate injections the pain is finally a bit better but I still feel wiped out and sick with every injection and am constantly needing my bloods checked which have been put of range for weeks and feel I‘ve swapped being a suboptimal Mummy due to pain to being a suboptimal Mummy from some pain and lots of sickness? Tiredness is still awful too.

I just don’t really feel I am winning but maybe I was just expecting too much and I just need to work out which trade off is least bad?

Thanks for the advice x

47 Replies

It is a very personal choice about what you are willing to accept as side effects and what not.Feeling nauseated, being on and off the loo and/or worsening fatigue where no nos no's for me.

Treatment is meant to make you feel better , not worse. "First do no harm".

I struggled on with early treatments, I kept getting told the side effects would diminish, and was encouraged by rheumatology to stick with the MTX, 11 months later I stopped MTX, being in a worse condition than when I started. The gut issues that started with MTX are still with me 2 years later, although considerably milder (not in the same league at all).

I also stopped one of my biologics after 6 or so weeks, despite being encouraged to continue by rheumatology, due to repeated minor viral infections and I had such a sore mouth. I was miserable.

My new meds are just so much better, virtually no side effects, so I'm glad I stopped the others.

It might be worth speaking to your rheumatologist or nurse and let them know how much MTX is making you miserable and that you are a mother struggling to cope. If you cannot look after your child /children rheumatology needs to take this in account.

Dont struggle on feeling rubbish, there are other meds out there that might suit you better.

Gif1986 profile image
Gif1986 in reply to Mmrr

Thank you. I think I‘m always a bit too careful saying that I‘m struggling with the side effects as I don’t want to come across as ungrateful! I kept thinking they would stop the methotrexate because of the neutropaenia and Incoumd avoid the conversation but they just keep dropping the limit of what is acceptable 😂So hard to judge though. Definitely just feels like exchanging problems rather than solving one!

I‘m glad you found something that helps and has no unpleasant side effects xx

Mmrr profile image
Mmrr in reply to Gif1986

There is no reason to put up with side effects that are difficult to deal with. Just tell it like is, straight, to the point , but polite.

If this is your first DMard I think we all had to make the decision when we’d had enough.After 10 weeks….. sometimes another couple of weeks on Mtx makes all the difference…or it doesn’t.

Not what you wanted to hear I know…but it really is a try it & see process.

Mtx seems to be the wonder drug, or the drug from hell….I had 7 good years on it..then it stopped working…..but for me during those 7 years I had a very good quality of life.

Talk to your rheumy nurse..listen to her advice..but if you feel you really can’t go on….say so & ask for a rheumie appointment & see what is advised.

It’s not an easy path….but trying not to swap drugs too often is definitely the best attitude to take….& when you find a drug that suits you ….forget what went before, look after yourself & keep positive.

I hope you find a drug that suits you very soon.

Gif1986 profile image
Gif1986 in reply to AgedCrone

Thank you. I have done twelve weeks of hydroxychloroquine and had sulfasalazine stopped due to neutropaenia so I guess with the moving neutropaenia markers I have got to 10 weeks of MTX. Thank you for the reminder of this being a slow process - very hard to see more than either the pain or the nausea at the moment!

Brushwork profile image
Brushwork in reply to Gif1986

The side effects rarely get better! The pain might - but after 10 weeks who knows.

Biologics tend to work much more quickly, so you know whether they are right or not.

Gif1986 profile image
Gif1986 in reply to Brushwork

Thank you. That’s my worry. That the side effects Are here to stay after 10 weeks despite the hope they may now go…it had in the last week or so finally had an effect on the pain but guessing that would mean a dose increase 😩 to improve

Hi, I was told Mtx could take 12-16 weeks. It started to make a positive difference after 7 then much more after 9-12. So likely you aren’t quite there yet but do say how you feel to your rheumy/nurse as if you’re a busy Mum you don’t want to feel rubbish all the time. Or just managing OK. I switched from Mtx tablets to injectable and I felt much better for doing that and it was my solo med for years and held RA back well until it just stopped working well enough after around 8 years.

Yes, I’d speak to your rheumy team after 12 weeks if you’re not needing to before then as you’ve then done the minimum they would want you to try it on unless you’ve had a severe allergic reaction (and they’d tell you to stop straight away if was the case.) I presume you told the rheumy about the sickness? Changing to another med may not be a fast process though (in past experience) and you’d have to wait until that next med took effect, too. My bloods were quite poor when I started Mtx for some time, I do recall that. It took many months before they started to behave. I was always anaemic. Not badly but noticeable and never really improving and I felt very lethargic. The injectable Mtx seemed to help a lot with my energy. Just in general and all looked up after then. So yes, tell them you are concerned. Good luck. x

Gif1986 profile image
Gif1986 in reply to Neonkittie17

Thank you. I am on the injectable as I really couldn’t tolerate the oral. Will try and hang a bit but also think about how to have a better conversation with them. I just say it still makes me really sick and they say hopefully that will get better and we move on…. I don’t want to seem ungrateful!Thank you again xx

Brushwork profile image
Brushwork in reply to Gif1986

Your health and well being are important to you and your family. The medication you tolerate should not add to the burden but lighten it. We have so many alternatives to Mtx available now, don’t be a martyr to it. Believe in your own worth and needs. Go gently

Gif1986 profile image
Gif1986 in reply to Brushwork

Thank you 🙏 😊 xx

Neonkittie17 profile image
Neonkittie17 in reply to Gif1986

I know you don’t want to be ungrateful and you’re not 💗 and I’m hoping Mtx starts to work more any time very soon. I only felt nausea at first on the tablets and then as I went up to the highest dose I had to change to injectable as it was waning after a few years, so I needed to try change the way I absorbed it and it worked. Once you’ve got past 12 weeks you can say I had hoped it would work better then this and my side effects are not improving. xx

Gif1986 profile image
Gif1986 in reply to Neonkittie17

Thank you that means a lotI hope you are doing ok x

Neonkittie17 profile image
Neonkittie17 in reply to Gif1986

Thank you. 💗 I’m not doing too bad thank you. x

Other drugs are available. No need to suffer.

👍🏻 thank you

It really does help if you drink lots of water on the take you have your meds , it does really dampen down the nausea effects for me ,

This doesn’t work for me drink loads of water all week and no improvement with nausea and sickness, tiredness etc for at least half the week.

Really that’s horrible , Different things for different people , it’s nice to say which helps you and then it’s worth just to try it to see , hope you find something that helps you

Gif1986 profile image
Gif1986 in reply to Matilda_1922

Same here. It wears off and then it‘s time to inject again!

I must be the lucky one. I have been on the metrojet 20mg MTX everyweek as well as Folic acid 6 times weekly. Started a month before Christmas gone. I have had no side effects that i've noticed. My tiedness was terrible before and flares were too much. Couldnt work couldnt run or train. I now feel great to be honest, still get a little stiffness in the wrists but am working again which probably causes this. |Am a joiner so saws hammers and lifting isnt going to help. I take Naproxon if i feel a little stiff or sore which sorts this out. Am also a keen runner and finally getting back to some serious miles a week and fitness, building up for when the racing starts again.

Suppose were all different and drugs that work for one wont be drugs that work for the other. There will be treatments and drugs that your body agrees with and you'll get that relief we all strive for when we have RA.

Stick with the Injections a little longer, see if body starts to except it more. Make sure your taking folic acid 6 times a week also. And try the Naproxon One before bed with anti acid and one in the morning with anti acid.

Hope it works for you. I was so relieved when i felt the change.

Good luck

I am on same MTX and folic acid, have been on this dose 6 months, still suffering with my symptoms. I take celecoxib with omeprazole for pain. My stomach is not able to cope any more either. I do so miss my golf, Nordic Walking and yoga. Am hoping to start a biologic soon, subject to more tests. Glad things are working for you.

It is and can be a long road Gillian. Hope you get back to your pastimes. I was longing to being able to run again when i was ill, Never thought i would again. Saying that i dont think i could manage 18 holes with my wrists, would definitely struggle even tho i feel almost back to normal. Little steps hey, maybe oneday. Hope you get sorted Gillian

Mmrr profile image
Mmrr in reply to Gilliancheche

I miss my nordic walking so much 😥

I‘m glad you were able to get on so well with it xx

One of the reasons I stopped was due to having a young daughter and was not acceptable when the side effects were affecting my time with her

Gif1986 profile image
Gif1986 in reply to Littlemunch

Thank you so much. I hate being given the advice to take it on my non-working days - - - that’s my time with the kids! Did they find that an acceptable reason? And we’re you offered an alternative?Take care x

Littlemunch profile image
Littlemunch in reply to Gif1986

Yes as could not function days after dose and falling asleep which was not acceptable with daughter who was 2 at time let alone having no weekend. I did stick it out for awhile and upped folic acid but did not help. Also had hair loss and mouth sores.

Now on Lefunomide and much better with only mild side effects.

I am on my 8th drug and still suffer with side effects. We give each drug a go until we can take no more.Never be afraid to talk to your rheumatology team and say you don’t want to live like this and want to try something else which may give you a better quality of life xx

Madmusiclover profile image
Madmusiclover in reply to Knit12

Definitely. I had to stick up for myself rather and felt bullied. The locum consultant did apologise to me for her words and manner when I told her how upset I was. It’s not my fault I can’t tolerate the cheap drugs.

I’ve been where you are , and struggled on for a total of ten months ( only to be told by nurse I should’ve only given it 3 ) I found the fatigue and low moods unbearable and felt an improvement almost instantly.

It’s a very personal choice but in urge end it’s your body , your life.

I will only give a new drug 12 weeks … that’s it . I think you can tell your feeling worse than before it’s not an option to continue.

Good luck and hope you find your wonder drug soon ( I’m still looking ) xx

Ah the rock and the hard place situation.I was put on MTX tablets which worked but left me very nauseous, so it was decided I swap to the injections.

Also I take folic acid daily except injection day.

Now some days after I feel awful, yuck & wiped out others not a real issue just tired.

I have no idea why that happens.

However MTX does control my autoimmune arthritis (RA) so I have a reasonable quality of life.

All I can say is speak regularly with your team, and only you can weigh if benefits outway the side effects.

All the best :)

Speak to your Rheumatology team. There are plenty of other drugs you could try. I was in the same position as you about 10 years ago, two young children and MXT making me feel so rubbish. I switched to leflunomide which worked much better for me and I had no side effects from it. It still wasn’t quite enough so I tried a couple of anti-TNFs and now on Rituximab but so glad I changed from methotrexate.

My rheumy said ," you've got to live with this" and didn't want me uncomfortable , swapped me to arava and I was so much better

That is a line you have to draw for yourself. In Holland we say, “soms is het middel erger dan de kwaal” ( “sometimes the cure is worse than the disease “)I used MTX and stopped after 2 month because of the side effects.

Wish you the best and hope you can make the right decision.❤️

Thank you everyone for all the wise and sensible advice and perspectives. It is very much appreciated x

I have the same problem with methotrexate too. I have soldiered on for almost 5 years. Tried reducing the dose but no difference so decided to stop them as rheumatologist appointments are non existent where i live. Now feel more awake with no sickness.

I stuck it out on tablet form mtx for six months. I went to see nurse and told her I refused to take any more. I was sick for most of the week, and in bed "out of it"or two or three days.I went onto leflunomide which besides some "digestive effects" were ok for two and a half years.

I am now on amegvita. So glad there has been a change and these are going to be given sooner now. They have been a life changer for me.

Hi. I’m very lucky that I can phone the RA nurses at any time although I find that they are maybe “too quick” to say stop taking the meds! I’ve tried Mtx tablets, Mtx injections, sulfasalazine - all of them made me unwell and I was told to stop. I stopped the injections after just 2 weeks as I told the nurse I had to take a week off work feeling sick, tired etc. I’m now waiting to start biologics - I’ve been waiting since April and have an appointment in august so it can take time. I spoke to the RA registrar in tears one time and she said “don’t struggle on, there are lots of things we can try”. It’s horrible but I like to think of it as a process - keep telling them how you feel and keep trying new things until you find something that works… The problem is , like you, I have no idea at what point I have to say “this is as good as it gets”.

When like me you have no side effects. Disease can go through long patches of near remission but then pops its head up and gives me a bashing now and again. After great patch I’m struggling atm but not battling my drugs at least.

Thank you! No side effects and long periods of near remission sounds like the dream! Sorry to hear you are struggling atm - what do you do when this happens? x

Feel sorry for myself. Hide. Seriously try to accept it but I am always in a low mood and on the verge of tears with the brain fog and fatigue.

Sending kind thoughts

Oh I hope it gets better soon xx

Gif1986 profile image
Gif1986 in reply to Tired-fed-up

Thank you.It‘s so hard to know. I’m not sure what I should be expecting or „settling“ for and I worry they think I am not trying hard enough from my side.

I hope you get on to a biologic soon and that it helps x

Tired-fed-up profile image
Tired-fed-up in reply to Gif1986

Yeah you too. I hope you can try something else x

I don’t think you can ‘try hard enough’ or not. If the drugs make you feel unwell speak up.

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