Fear of methotrexate

[Pasjc]

I'm terrified of methotrexate which I've been told I must go on but I'm waiting surgery on my neck so the meds are delayed as you cant have surgery on methotrexate. I'm really struggling and confused my mother died of methotrexate poisoning which has added to my fear any advice would be helpful

[helixhelix]

First off, no-one can force you to take a medicine that you don't want to. It is your choice. However, to keep the doctors supporting you, you need to explain why you don't want to take it calmly and clearly and politely ask them to suggest alternatives. As there are alternatives.

Methotrexate can be a great drug, I've been on it for 9 years now and I would literally punch anyone who tried to take it away from me! But it's a strong drug so sadly a few people do have bad reactions to it. You say your mother was poisoned by it? What do you mean by that as it sounds quite unusual unless there was an accident and she was prescribed the wrong amount? Or did she have a very bad allergic reaction? If so, did you tell your doctors as that could be more relevant?

Only you can decide. But many, many of us do very well on it and have done since it was first used some 40 years ago. And you don't say how aggressive your disease, as that makes a difference to. You probably know that RA can attack your whole body? So only you can weigh up the potential damage that uncontrolled diseasecan do to your body versus the risk of the drugs.

It's a hard choice for you, but you are not your mum. Things could be very different for you. Good luck.

[Pasjc in reply to helixhelix]

Thank you all for your replies my mother was on methotrexate for ten years very successfully then had a very bad reaction and died there is a nagging doubt in my mind that she double dosed as some tabs went missing I'll never know it's probably an irrational fear but its huge I read as much as I can as being informed is the best way forward hence another reason for joining this group to get a shared experience

Thanks again

[helixhelix in reply to Pasjc]

Fears are fears....telling yourself its irrational doesn't change much except make you feel worse about it. In general methotrexate is a safe drug, and the fact that your mum didn't react to it for years is a positive. Sadly there are rare events of overdosing, for example taking it every day for a while, but there are with many drugs.

Think about how you want your life to be, and chat to your doctors about your fears.

[Bradclew in reply to Pasjc]

I’m not sure about any of theses drugs I tried mthx fir one day and had a really bad reaction

But now I’ve been on Benepaly fir 6 months and still waiting for the miracle my consultant said would happen,so Im now asking what next xx

[Tile in reply to Bradclew]

FYI People with MTHFR 677T gene polymorphisms do not do well on MTX and it can be very problematic. And if on MTX and take folic acid instead of methylfolate can have even worse outcomes. MTHFR gene defects are very common in autoimmunity disorders. It makes it harder to detox toxic substances and medications.

[NanaFifi]

I agree with helix helix. I have been on mtx for several years now and have not had any problems with liver function etc. However, each person is different and unfortunately you won’t know how you react until you try. There are other options available and I’m sure if you explain your fears your Rheumy will understand.

Good luck x

[phil_54]

Hi, Yes i agree with the other guys MTX either works for you or it doesnt and is a really difficult decission to make especially when you have such fears along with your mothers background, All i would say is think seriously because this is about you and whats best for you, I was on MTX for 5 years and unfortunatly i had to come off it because of high readings on my liver markers but now i am on Rituximab infusions wich have been a blessing for me so there are many options without MTX that can offer the same level of comfort even remission, Im sure youll make the right decission for you in the end.

Good luck

[janeywaney63]

That’s interesting about not being able to have surgery when on methotrexate- I’m on it and I’m also on a waiting list for a full wrist fusion. Both my rheumatologist and my hand surgeon have said I must NOT stop taking it! (They did say why- but I can’t remember their reasons now!)

[Pasjc in reply to janeywaney63]

Apparently because the drug affects your immune system is affected by the drug my spinal surgeon is out of the country till next week I'm going to have a chat to him and get his opinion. It maybe my rhuemy doesn't want to start it and my body have major surgery at the same time

[Mmrr in reply to janeywaney63]

I was told I could have surgery whilst on MTX, but not steroids by my plastic surgeon. But not the biologics I am now on.

[helixhelix in reply to janeywaney63]

There is no absolute rule on this. It very much depends on the extent of the operation, on you as an individual (ie how fragile you are), and what other drugs you might need to be given. So each doctor will assess the patient and advise individually.

[Mmrr]

No one can make you take anything you do not want to take. Thankfully the medical profession do not have that level of control over your body.

MTX, works well for many people, but understandably you have fears due to your mothers experience. I think maybe you need to discuss these fears with your Dr and ask for alternative medication if you would prefer that.

[Simba1992]

I do understand your fear and reluctance to use Mtx. I share your sentiments.Its a cytotoxic immunosuppressive med with very varied effects on your body depending on your individual situation, age,comorbities, constitution and so on. How you react to the med and. what longterm effect it has cannot be compared to reactions to any onyone else. True. enough that it has been a med that has helped many in different ways. It's not an easy choice to make.You may also want to look into functional medicine and try to find a solution in combining less toxic RA meds with alternative treatment solutions.