I have a decision to make regarding meds. I have been on mtx for 9 weeks and the inflammation and pain stayed high. Nausea was getting worse,despite being on 6 folic acid a week and metoject rather than oral ( have existing g gastric problems )
Rheumy nurse said consultant suggests swopping to LEF so,typically my swelling and pain levels have improved quite a bit the last few days on the mtx!
So I think ( as all drugs have side effects ) I could live with the nausea at this level on the mtx. So should I give it longer chance to see if it improves further OR start LEF with unknown side effects and the risk of feeling like I am starting from scratch again?
My instinct is to carry on with the mtx about longer. I know meds can take weeks or months to really kick in.
Have a call with nurse on Tues but any thoughts would be appreciated
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hazelcats
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I would say definitely give it longer .If Mtx works well for you it really is worth waiting. I was on it for seven years with never a problem. I just woke up one morning and it had stopped working…no tapering off..just stopped. I had honestly thought I was on it for life..
Obviously discuss with your doctor…but if rheumy says keep going….it is really worth a try.
Thanks that is my thought really, I think because I've had 9 weeks with zero improvement and the the last few days better, pain and impatience gets the better of us.
My amateur opinion is the longer you stick with Mtx ..unless you have really unacceptable side effects…is dig really deep. OK…..diarrhoeas is unpleasant…but it’s a walk in the park to the alternative. …chopping & changing DMards & still not progressing,
I bet if truth were told….. a lot of people look back and wish they had stayed stuck with it longer.
Fingers crossed it does start working satisfactorily for you very soon.
Thank you so much. Yes,the thought of changing meds now and having to virtually start again is not pleasant. And it course side effects may be worse.I think I just need to grit my teeth and persevere with the mtx.
Then
pain has been much relieve and the inflammation less than it has been for a few months which is encouraging.
I will of course talk of over with the rheumy nurse next week but yes, I do need to be patient and carry on. Better the devil you know sometimes... Thanks
Hi, they do say give it a good 12 weeks for good improvement so maybe hang on there. For me the awful nausea and upset tummy took a good year to lessen. Sometimes I get fatigue sometimes I feel like I have good old morning sickness but it's rare now. I'll have been on mtx three years this Christmas. I do sometimes think I get a mood crash on second day after taking it. Such a funny medication but also like changing xxxx good luck see how your inflammatory levels come down
Yes, I always feel just bleugh the day after injection. I am seronegative so have to work with symptoms rather than blood results which adds to the fun!
Yes I'm aero negative too. For the first year after diagnosis..tho I'm sure I've had it all my adult life, I'm sixty this year....I had full bloods and now every three months. I know what you mean and especially at my age it's hard to pin point what I the meds what is the autoimmune issue what is menopausal hormone fluctuation and what's just wear and tear aging etc....o and what hyper mobile issues 🤣we are all a complicated amazing mixture aren't we xxx
Definitely give it three months minimum on methotrexate, it's a slow burner, especially as we typically start on a lower dose to begin with. I found the stomach problems eased after a bit, and were helped a lot when I started on probiotics, but I didn't have nausea (I had awful painful wind), so that might not be relevant to you.
The I think of the nausea stays at This level so can cope with that, I know all meds come with varying side effects on the whole. It was the pain and inflammation that I cannot bear, but as I say some improvements last few days so I think I will continue with the mtx.
But I am very thankful I wasn’t diagnosed when the drugs not only made us feel lousy…but half the time they didn’t even eventually work. If RA gets us these days as long as we give it our all, & accept our rheumy’s advice the chances for a high percent of getting something that will really work are 1000s% more likely.
O so interesting I always thought we couldn't take probiotics on mtx how do you get on with them and may I ask what you take please? I always took them before meds, so beneficial x
The bacteria in probiotics are the ones that are naturally present in your digestive system so I don't know why we wouldn't be able to take them. If a doctor has said otherwise to you then don't take them. But I am not stopping them, they're a godsend.
Yes I agree , I've read that when we are immune suppressed the bacteria can multiply excessively and cause tummy upsets. I know ordinarily we can't overdose on them but id been lead to believe it's different on our meds. I'm definitely putting that on my list of questions for next consultation. Thanks so much for mentioning it x
Sorry to be a killjoy…but when you are on any prescription drugs…it really is best not to add any OTC potions until your rheumatologist has OKd it. What you want to take is probably fine, but it’s not worth spoiling what could be the right life long drug for you ….just ask first!
No this is the only medication I am on for the inflammatory arthritis, but I take Naproxen from my GP as well. Also one morning low dose cocodamol.GO also took me off the omeprazole ( hiatus hernia) and changed it to Lansomperzole ( excuse spellings ) in a bid to help.
Thank You yes, I have been altering my diet for many years knowing what triggers things. It's all a balancing act isn't it and sometimes the scales move the wrong way.Thanks
Yes you need the lansoprazole if on Naproxen I have all your health issues too touch wood methotrexate is working but I take hydroxychloroquine too. Trying the Nerva app for IBS which is interesting early days but it calms you so good. Educates you about your mind body reaction too and how to recognise it and disinengage. If we can sort one thing out got to be a bonus to manage the arthritis and pain. Gave me cocodamol with a big box of laxatives I did laugh ....
🤣 hence the reason I just try to stick with one cocodamol! IBS tends to give me cramps and diarrhoea whilst the hiatus hernia does the acid indigestion bit, so yeah I sympathise with you.I also have osteoarthritis and fibromyalgia so initially my hope was to get the inflammatory side under control before looking at the fibromyalgia side. But I have now started trialling amitriptyline to see if that helps the nerve pain... Never ending!
But GP agreed its worth trying to help the worse symptoms rather than all the causes as they often overlap.
So like you, sorting one thing at a time to keep it manageable and helps to see what med is actually working ( or not ) rather than throwing everything in a t once.
Hi catz, good to hear you're finally noticing an improvement. Sounds like it's worth sticking with it a bit longer and maybe the nausea might ease off? Keep my fingers crossed for you xxx
Thanks Fluff. Being new to his I think I lost my nerve a bit... 2 1/2 years of symptoms, tests coming back negative ( because like you, is special 😂 ones are seronegative) I think has made me understandably impatient.So when I did start feeling better the last few days my natural assumption is on its fluctuating like our friend fibromyalgia! X
I'd probably give it a bit longer. I had the same side effects after first starting, although I was lucky in that upping the folic dose stopped the nausea quite quickly.However I'd also say don't suffer in silence if overtime it doesn't improve. I had a year on mtx with virtually no problems and no RA which was great. But then developed other side effects that I tried to cope with for another 18 months.
I'm in the process of changing to lef now, and wish I'd done it sooner. It's important to give the drugs a fair go. But quality of life is equally important.
Thank you Seb,if the nausea stays at about this level ( with folic acid and lansoprezole ) I think I can hear that if it means the pain and inflammation are improved. But experience has sadly ensured I will ask for rheumatologist advice,hope the LEF settles for you at last. Take care
I have gastric problems too. Tried all the DMARDS and I can only tolerate sulfasalazine but also need to take Benepali biologic too. Id say if you're coping and getting some relief now stick with the MTX for another month and see how you go. If you add or go on just Lef get them to start on a low dose and build up very slowly. it gave me chronic diarrhea when they doubled my dose after 2 weeks. I lost 2 stone in a month, not good. But everyone is different. Don't suffer on silence though if you get bad stomach. All the best.
Thank you, nausea and a bit of digestion seems more acceptable than trying to cope with worse LEF side affects, though we are all different. It's so hard to try to be in less pain but end up with such additional prob lems. X
Hi. Sorry you've had issues with MTX. I've been on MTX (2 yrs) and prednisolone for 3yrs (dosage up and down). Tried Leflunomide in addition to these for 8 months last year and had to stop. I suffered from very bad nausea and developed symptoms that resembled inflammatory bowel disease - it was unbearable and as soon i stopped Leflunomide the nausea stopped and the bowel issues largely resolved though now I have a dairy intolerance. I have RA and PMR so now started on injectable Tocilizumab in order to taper the Pred- on my 4th does tomorrow. so far so good. So, from my experience, avoid Lef if you can if you already have GI issues - it could be even worse. All the best.
I was told that Methotrexate can take a good three months to work so it sounds like it might be starting to have an effect for you. Maybe you should speak to your nurse and say you would like to give it another month? I know it works for many people and they can be on it for years. My hubby has psoriatic arthritis and has been on methotrexate for about 15 years. I started on it when first diagnosed and gave it 8 months with debilitating side effects but could not cope. The nurse put me on Leflunomide and Hydroxychloroquine which have given me hardly any side effects and seem to be working. I hope that you continue to benefit and start to regain control of the pain and swelling 🤞🏻🤞🏻
Thanks Kati, that's my plan now. Talk with the nurses and say I want to give it more time in view of the bit of relief I am now getting. And the I I will make a diary just to try to monitor things too symptom wise.I am working with osteoarthritis and fibro so it's not always easy trying to find what symptoms come from what.
Glad the replacement meds are working better for you x
Hi. I think it all depends on how much you can tolerate the side effects and how effective the methotrexate is on your RA. If you can, as others have said, I'd stick with it a while longer. I found I was ok on methotrexate for quite a while but had to gradually keep upping the dosage and after about 2 years I reached a point where the nausea was too much for me. I then went onto lef and have been on it for 7 years with no side effects apart from it made my hair curly! Unfortunately it's not as effective for me now so my rheumatologist has added in abatacept which appears to be working. Good luck and I hope you continue to get good results
Like others have said, I would give it a bit longer on methotrexate especially as you are now starting to see some improvement. The advice is that it can take up to 12 weeks for it to start to work. Folic acid helped my nausea when I was on it, so hopefully, it will start to subside.
With regards to probiotics the advice is not to take them when immunocompromised because they are live bacteria and the immune response to deal with them may also be affected. However, check this with your rheumy nurse.
I take potent supplements which have helped me immensely. Doterra life lifelong vitality, but I checked with my consultant before taking them. I've been on them since 2017. I'm also on etanercept. I was taken off methotrexate many years back due to neutropenia.
I hope the methotrexate now starts to work for you and you continue to improve. Good luck xx
Thanks so much Wilfdog, yes I am certainly carrying on longer with mtx.End of the day nausea etc is a small price to pay if the pain and inflammation is improved.
Curly hair?! I could cope with that... I think I could get on with the nausea of as you say it benefits the inflammatory arthritis. I have always said a person needs to work out benefits vs side effects from any medication.But I am aware that a body can almost get used to or suddenly no longer accept a med and may need changing.
Definitely going to keep going with mtx longer and Maybe the Lansoprezole ( spelling!) may even kick in better to to help the gastric side.
I am on Methotrexate for RA and take a Probiotic. Please do check though with your specialist that this is ok for you to do. I use Primal Living Probiotic which contains a good range of quality "good" bacteria. Recent studies suggest a link between using Probiotics and reduction in inflammation levels. However studies are ongoing in this area but early signs suggest that Probiotics may be an effective adjunct therapy for patients with RA. I also take a quality Omega and Hyalauronic supplement and can notice a positive difference when taken alongside my prescribed meds. All the best with finding your jigsaw fit of meds, keep trying and don't give in! x
I'm quite wary of too many supplements. A gp noted my vitamin D and B12 were a little low so I take extra, plus some flax seed oil on her recommendation.But. I did tell the rheumy nurse this just in case they interfered with any meds.And thanks - I won't give in But need to learn some patience! 9 weeks of worsening pain made me feel meds wasn't working but now there is a noticeable difference so I will persevere but know there are future opt ions or they
Hi hazelcats , it sounds like you've reached your decision for now, but I'll add my tuppence worth in case helpful in any way! It took a good 4 months for me to see clear therapeutic benefits from MTX, at the two month mark I was still heavily dependant on prednisolone for any RA symptom relief and still needed to have an IM injection on top of the tablets. So it definitely can improve from here. Also, with MTX side effects, they did gradually settle down for me over the first year, so you may find with a bit more time the nausea does ease further for you, or you find ways to reduce its effects. But as you say, there are also lots of alternatives if it turns out not to the one for you.
Thank you I know we all react differently to meds, but it is always reassuring to hear of someone in a similar spot. I do hope the nausea can get better or if need be I can control it better, because it's gotta be worth it if the mtx has a positive effect, both in current symptoms and helping to slow any further damage
I'd go with your preference to try for a little longer on MTX. If the side effects increase again or the pain and stiffness worsen, you still have the option of swapping to Leflunomide.
Hello from "across the pond". My wife has had T-cell LGL Leukemia up to this point. She has been taking 15 mg (6 pills) of methotrexate (MTX) for nearly 3 months now and is feeling much better how. She also takes 1 mg of folic acid every day except on her MTX dose day. (I think that may help to address nausea and facial sores which I've read about.) It took at least 9 weeks for the MTX dose to have a good effect on her. She was earlier on a dosage of 10 mg (4 pills) which seemed to be ineffective for 3 months so her doctor upper the dosage to 15 mg which is effective for her for now. Periodically, she requires an Udenyca (or Neulasta) injection to address her white blood cell and Neutrophils ABS (ANC) counts which is monitored monthly with her blood work check. I hope this helps you as MTX has been a helpful blessing to her. I recommend to keep the blood work checks going periodically and give the MTX time to "kick-in". Greeting to you and all our friends across the pond.
Hello USA! I can't say good morning g or afternoon due to time differences! I know when so speak with a friend in Florida I need to mentally take 5 hrs off from UK times.
Thank you, like your wife I am on 15mg, but via injection as this can lessen gastric side effects. Interesting she also hit the 9 week mark at that dose before getting positive results. I I swim my head it can take weeks or months to improve but after 2 1\2 years of worsening g symptoms, finally getting a diagnosis and then treatment.... Those 9 weeks seem endless.
I also take 6 folic acid, leaving out the injection day and hoping for 3 to 6 has helped. My gp has also put me on stronger gastricdrug( hiatus hernia )) so that also may improve things.
I do have the 2 weekly bloods to check any adverse effects on bloods or organs,fortunately at my gp surgery rather than travelling to hospital.
I wish you and you wife well and hope she continues on a better health path. X
I would stick with the meth. My rheumy told me it can take up to three months for it to fully work and I found the side effects gradually improved. I had severe side effects with Lef.
Thanks worth knowing just in case things do get worse. Thank you. Am definitely sticking with the methotrexate, just need to speak with nurses next week to let them know. It seems such a relatively ( if unpleasant ) side effect with the nausea but I am able to tolerate that if the mtx continues to improve the pain and inflammation.
I would suggest, give it longer. The nausea may decrease as your body gets used to it. For info:- although I take Methotrexate for a different auto immune condition, it took me 2 years to get the full benefit from Methotrexate. Good luck.
Thanks so much, I think the nausea although unwelcome is something I would try to continue tolerate if the methotrexate continues to improve the stiffness, pain and inflammation. As you suggest the body may also need longer to acclimatise to the negative affects as well as the positive effects. I do know someone who said it was over a year for him to see the full benefits of mtx.. So seeing a little progress is quite reassuring for me.
Hi I’m sorry to hear you’re struggling a bit at the moment. I think most of us have been there regarding nausea in the beginning. From my experience the nausea was awful for several months until my body got used to it. Once it did I had no problems & I was on Methotrexate for 15 years & it worked well. If you can manage then maybe give it a bit more time.
I should have learned by now that no meds seem to be side effect free... I will persevere with the Mrs as it seems to be improving the inflammation and symptoms. Thanks for the reply
Hi, I was on mtx injection for about 8 years and then my RA consultant moved away and the new one changed me to Leflonomide. Mtx took the full I2 weeks to work for me and I did have a lot of nausea and headaches and mouth ulcers, but Leflonomide gave me the most terrible upset stomach (I have IBS,) to the point where I wouldn’t leave the house. Mtx seemed like a walk in the park by comparison to me! I’m on a biologic now but I’d definitely recommend sticking with the mtx if you can, especially as you have gastric problems. Of course we’re all different and you may well be fine. 🤞🏻For the nausea I highly recommend wearing travel bands - they really do help - I practically lived in mine! Good luck!
You are right swapping relatively mild side affects, unpleasant and draining as they are is the better option than potentially starting again from scratch on the LEFand maybe being worse off. Mine week so mild compared to the horrible debilitating effect LEF had for you.
But I know what doesn't work for one person may be the correct med for someone else. Such trial and error and I need to give it longer.
I'm definitely sticking with the mtx at least for the near future to see how things settle Thanks
Hello I switched from Mtx to Leflunomide and had the most horrendous side effects. Really bad vomiting and diarreah which did not improve. Leflu. is not for everyone and only some people have tolerable side effects. It is not the best drug I think anyway I am now on Rituximab much better drug saved my life but again not for everyone. I am afraid that it will take time to find out the drug that best suits you and at least now there are up to date treatments available. Good luck and all the best for your future improvement.
I am starting to realise that I am right to continue with the mtx. Having gastric problems to start with is a sure way to add to them with additional meds.I'm glad you finally found what works for you. I am quite newly diagnosed so am.still learning about the different meds and side effects. But becoming aware it's a long term struggle.to find the correct medication and adapt or change in the future if need be.
I really do appreciate all the input, advice and support from everyone. Thank you all
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