Hi everyone
I just had a meeting with rheumatologist that has left some questions hovering in my head. I wanted to stop MTX having got the dose down to 7.5 which she says is the lowest does that can have any effect. Whilst she agreed that the MTX is probably not doing anything for my RA the wants me to keep going for 2 reasons. First because although it's not so crucial to drug longevity with tocilizumab, which I am now on, it still may help to keep the biologic working longer. This wasn't quantified so it seemed quite vague although fair enough. Secondly she said that if MTX is completely stopped it can be very difficult to resume it again if it's ever needed for different treatment in the future and that resumption can make you very sick, far more than when first starting on it. I've looked online to try and read about the second reason but cannot find any articles on this so wonder does anyone on the forum have experience of trying to resume MTX and it proving to be impossible?
She left me with saying it's my body and it's up to me what I put in it but her advice was clear. ( So far I have always followed all her advice but it's been important to understand it as far as possible )
First Rheumy Nurse Appointment and MTX Start
stopping MTX
MTX problems
Started mtx Friday
Stopping MTX with coronavirus
I was sick when I first started Methotrexate, and even worse the second time I tried it, despite being on the injections and gradually increasing the dose. So I think it depends more on the individual as so many people tolerate really well.
It may be she has had a patient or two that have reacted in that way as I can't find anything in the literature.
Thanks old timer. Can I ask you whether the sickness passed after a while?
nope! i had all sorts of gut issues with it, so had to stop.
Hi, Old-timer!
I’m having gut issues. Seems I may have a stomach ulcer (need to schedule an endoscopy) and I have bowel issues. Is this anything you’ve suffered? My rheumy doesn’t want me to stop taking it until I see her in two weeks but won’t that just make my issues worse?
I've just stopped taking MTX for the second time, called the helpline and left a message saying so.
A nurse called me back next day, she was very empathetic .
It's your body, you do not need to take medication that is not agreeing with you.
It's your body. If your bowel issues are too much to cope with, then stop the methotrexate. If you think you can carry on then the rheumatologist will be happy - but that isn't the priority is it?
The bigger problem is what happens when you're off the MTX and the RA flares like hell itself?
If you have the MTHFR 677 gene defect you will have a hard time on MTX. Think many RA people who can't tolerate MTX could possibly have this gene defect. It's common in the autoimmune disorders and even those without. But MTX is one of the most problematic meds for them. This gene problem makes it a lot harder to detox toxic substances. B12 and folate levels should be optimal and folic acid avoided. Folic acid can build up because they have problems breaking it down to usable form. If they are taking MTX with folic acid not methyfolate it can do more damage.
Interesting. Thank you.
very interesting! I wonder if my Doc would be willing to test me for the gene mutation. She never brought this up! Where can I read more about this?
Try a search on MTHFR C677T that's the genetic polymorphism that many with autoimmune disorders have and if there's a TT defect from both parents T677T which is more rare then there is a bigger problem with the whole methylation/detoxing process. It's too complicated so read up on it. You dont have to have this SNP to have adverse reactions to methotrexate...but if you do you have it it's good to be aware of it. Also your body can have a hard time breaking down synthetic folic acid to methylfolate. Your labs can show high folic acid which can just be the unprocessed folic acid accumulating which you do not want. A red blood cell folate test would be more accurate than a serum folate test.