Struggling with side effects

[Elsie1970]

I am really struggling with the side effects of Methotrexate. I have taken 2 doses of 15mg and the side effects are worse than ever. I really don't think this is the right medication for me. I have decided to stop taking it until I have seen my doctor on the 11th, fingers crossed this is the right decision but I can't go on feeling like this.

[sylvi]

Before you stop taking your MTX soeak to your rheumy or dr darling. xxx

[Elsie1970 in reply to sylvi]

Thank you but I don't have any access to them.

[Boxerlady]

Sorry to hear that you're struggling again this week, Elsie. Is it your rheumy you're seeing on the 11th? I think you said that you haven't got access to a rheumy nurse advice line but I suggest that you ring the consultant, the consultant's secretary or the department to tell them rather than waiting until your next appointment.

[Elsie1970 in reply to Boxerlady]

Hi at the moment I have no appointment to see a consultant or any contact details for a nurse, its the doctor I am going to see on the 11th, its not been an easy decision to make as I feel like a failure but I know my body and it really can't take anymore of feeling like this.

[Boxerlady in reply to Elsie1970]

You're not a failure, many people have to try various medications before finding the right one. I do think that it would be worth trying to let your rheumy know rather than waiting until your appointment in 3 months time as hopefully they'll suggest something else to try immediately.

[Mmrr in reply to Elsie1970]

You are not a failure, the medication is failing you.

I was 'persuaded' to stay on MTX for 11 months... tabs and then injections. The side effects were awful and it did nothing for my joints.

I stopped taking it and then informed my rheumatologist.

I would never take a medication that had such a negative effect on me again.

Be strong and just say no. Once you have said it, the rest is easy.

MTX does not suit everyone, many on the forum are examples.

Best wishes to you.

[Elsie1970 in reply to Mmrr]

Thank you so much for your reply. I really have tried to make a sensible decision, I just feel if it is worrying me so much then I need to stop and speak to the doctor before deciding what to do next

[Zara0123 in reply to Elsie1970]

Ring your hospital and get your Rheumatologist's secretary's number. You'll get a call back from someone. I started Mtx in June 2019. I haven't had any contact from my rhemy team since November 2019. Recently I became really ill and had pneumonia I didn't know whether to take Mtx on Monday the way I usually do. Thank God I managed to get through to the secretary who spoke to a nurse and advice me to stop Mtx as two days later I ended up in hospital with pneumonia and things could have been worse if I had taken Mtx on that Monday. I was critically ill in hospital for 3 weeks and I'm just so glad I managed to speak to the secretary who advice me to not take Mtx that day.

[Zara0123 in reply to Elsie1970]

Please don't think your a failure. Ra meds don't suit everyone. You know Mtx isn't working for you. Another medication will work. Think positive as RA itself is difficult enough to live with. If you start blaming yourself you'll only make yourself more ill with worry.

[AgedCrone]

Have you spoken to your rheumy nurses? If you give up on Mtx so soon you may be missing a really good drug….we can only tell you he we manage our drugs…..with Methotrexate - plenty of fluids, the right dose of Folic Acid & maybe splitting the dose or changing the time you take itMAY help… but we don’t know your clinical history …your nurses do - so they really are your first point of call.

Do try to persevere….Mtx really can be long term help once you are settled on it.

[helixhelix]

Do you take folic acid and are you drinking lots of water? I hated MTX to begin with as took a while for my body to get used to it, but got there in the end and the pain and symptom relief was wonderful. Still taking it 11 years later.

It’s a personal thing, and if you can’t cope then you can’t cope. Just be aware that a lot of the drugs available for us to take quite a while to get accustomed to and all come with risks. MTX has been used fo4 40+ years so has a very good safety and effectiveness profile.

[rabbits65]

I feel really sorry for you . I think in this instant you’ve probably made the right decision . Don’t feel you’ve failed because you haven’t . You know what your body can and can’t cope with . Try hard to find a doctor at your practice to discuss things further . Thinking of you. xxx

[Elsie1970 in reply to rabbits65]

Thank you so much for your reply

[barbieg]

If you don’t have a phone number for your consultant or his/her secretary or nurse please ring the Rheumatology department of your hospital to ask for the phone number and email address. Tell them how bad you feel and I’m sure they will try hard to help you. Don’t just stop, let them know please.

[oldtimer2]

I can completely understand! I did stop methotrexate after being on the tablets, transferring to injections (with a lower dose) and continuing to get massive ulcers in my mouth, an overactive gut and brain fog all of which improved after stopping. I know lots of people who are completely happy or can tolerate it, but I wasn't one.

But you do need a means of contacting your medical team. If they don't have an advice line, then contact the rheumatology secretary and say what you have said here. They need to know that you aren't coping so that they can change the plan.

[nomoreheels]

Hiya Elsie. We're advised not to stop meds without the ok of our Rheumy. I understand why you'd wish to though, you're not the first & it's not giving up & it doesn’t make you a failure, please don't think it does.

If you've not been given a helpline number or any other way of contacting your Rheumy team have a look on your hospital's website, or call the main line & ask to be transferred to the department or if that isn’t possible your Rheumy's secretary.

When I started MTX I was advised not to take it in one dose, but to divide it with meals throughout the day. Taking them this way it's less of a hit on your body. I had no digestive side effects. Your folic acid dose is also low, quite common initially, but as it's intended to help with side effects you can ask if it can be increased. Many of us take it 6 times a week, just not on MTX day.

As you'll be coming to an end with prednisolone you'll lose the effects of it reducing inflammation & pain. Whilst you may feel stopping MTX won't make any difference the idea is you're prescribed pred whilst MTX is starting to take effect on disease activity as it can take around 12 weeks to reach it's potential. Also, often once your course of pred is finished MTX symptoms may ease too, as in some it can add to the side effects of MTX.

You'll be having your blood test as requested won't you? It's best you do so your Rheumy can check your levels.

Don't worry, you're not the first to want to stop your med because of side effects. If your Rheumy is made aware then you can work together to sort it.

[ABwn]

I found that medication for mtx from different manufacturers made a difference. Found one that was not too bad. Could live with it. When I could no longer access that one the rheum nurses put me on Ipen. Much better. Very little if any side effects. Good luck.

[Sheila_G]

I agree with Sylvi. Don't stop it. Call rheumy on monday. Good luck.

[Hidden]

Quite right too! I stopped Methotrexate after speaking to my RA team, way back, 20 years a go and was given an other medicine. Don't be afraid of asking for something different- not all medicines are right for you and can create some bad side effects.

[patrickd]

Talk to your RA. I couldn't take the Methotrexate in tablet form due to side effects so we switched over to injections and I didn't get all the side effects. I no longer take it though as it did not help my RA. I don't think you can just "stop" taking it though? I sort of think you need to wean off it or you will flare up...granted it's been 14 years since I've taken it so I honestly forgot.

[Peptink]

Can you tell us the side effects that you’re experiencing? I’ve been taking 15 mg for about 5 months. I don’t think it’s really helping at all. No side effects that I know of.

[Helen-NRAS Moderator]

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

[JanieJ]

Hi, I've just seen your post and am in a similar position as you and wonder how you got on?

I also have had two doses of 15mg and felt unwell since day 6 of the first dose with gastro/intestinal issues, tiredness and brain fog. I haven't as yet taken the third mainly due to this. I have been encouraged to try again, which I will next week, but like you I know my body and know that when the 'stomach' issues are triggered, it can take many months for it to calm down. I truly admire the persistence of the many on here that stick with it but know I won't be able to if it continues like this as I can't function like this.

Can I please ask you to let me know if you've had the same symptoms and what was the outcome after seeing your dr?

Just to add, my RA was triggered by the flu and booster vaccines in December and after seeing the GP in January, when I then had blood tests and x-rays, I was referred to the Rheumatology Department end of February. I saw a consultant and have access to the secretaries and specialist nurses. I say this as I would suggest that if your gp hasn't already done so, press for a referral to your local department so that you can get the necessary care. So far, although under a lot of pressure, mine has been very helpful and is a part of the NHS Rapid Access Pathway, although I am unsure if all areas have this.

Best wishes.

[Hidden]

Morning. My Rheumatologist advised me to ‘stick with it’. It took 2 years for my meds to start working (incremental increases of Mx and Sulf) and another 2 for me to regain mobility/ dexterity. I was totally immobile though, and screaming with pain if I tried to move; how things work depends on disease severity and an individual’s biology. I was ‘rapid onset’ of the most severe kind. I thought that that was my life, no walking, no moving at all 😭. It is a long game we are playing.. quick fix doesn’t come into it.

Don’t stop taking any meds. Monitor how you are feeling, how function is changing (if at all). Your body is rejecting the drugs, that’s what it does.. your team can only make informed choices about your care if you play along.. Sorry you aren’t feeling well.

[Hidden]

* I would also suggest that you take your dose in the evening with a ‘proper’ meal. Also ask for an antiemetic to help with nausea.