I gave in, agreed to methotrexate

I'm crying so much because I was determined not to, I can't believe I'm going on chemo at 20 years old. I tried to explore other modalities, I tried as many supplements as I could afford, and I know I didn't try anywhere near everything there was to try but I'm so tired guys, nothing helped and I'm still bleeding and in so much pain. My last bloods showed CRP of 25 and ESR of 36. I'm tired of reading up on random herbs and impossible-to-obtain less toxic drugs every second of the day, I am so tired of having to make these impossible decisions for myself so I'm putting my life back in the hands of the doctors for now. Told my nurse yesterday morning, and I'll probably begin the methotrexate in two weeks. Maybe I'll be one of the lucky ones who it works for.

You have never done Humira or Remicade? I was on MTX for about 6 months.

My pharmacist was also baffled when I told him, he has no other patients on methotrexate for colitis. Perhaps I should pay for a private doctor's second opinion after all.

No I haven't tried any biologics, apparently UK officials don't really believe it helps for UC and only use it for crohns. The one major horrific fault I've found with our health system.

If I fail mtx I will probably get three doses of remicade.

Arbee_DC said...
Sorry about this question. But chemo is only for cancer right?

Why are u having it?

Hope that you will be well soon.

Thank you. As it turns out this type ofchemo is also used for autoimmune diseases.

scum1 said...
Usually MTX is used with a biologic like Humira. I was on MTX and Humira for a while. It's not that bad. Is it injections or tablets. Mine was injections

Happy to hear that it wasn't that bad. Did it work for you? I will be using it as monotherapy and not in conjunction with anything else. I am meeting with my consultant next week to see if she thinks I need injections or I can just take tablets.

I'm now feeling doubtful about it again, so I've forked out the money to see another doctor privately for a second opinion.

It is a teeny amount compared to what a cancer patient would receive.

I was in a drug trial to see if injection MTX works for UC. I gave myself an injection once a week for about 6 months. Supposedly the injections cause less nausea than the pills do.

It did not work for me. I was pulled out of the study b/c my flare got worse. It was an open label study so I was definitely getting mtx and not placebo.

There is not much data to support MTX alone working for UC. I'm not even sure if the particular study I was in is still ongoing.

I hope you have some luck with it. You never know which drug will work for you. Remember to ask that they monitor your folate levels when on it.

For those saying why no Remicade - Due to the way funding is with the National Health Service in the UK, you have to "fail" a drug before they will put you on the next one and cost is always an issue.

I have been told, after meslazines and steriods the order for UC is:
Aza, 6mp, methotrexate, ciclosporin.

If you "fail" all of these then you may be lucky to be funded for infliximab (remicade) but if you don't have what is classed as severe colitis (which guidelines say when you are at the point where only other option is surgery), guidelines say you don't qualify.

The thing with the NHS in the UK is, you'll never be left with no treatment but a lot of the treatment available is years behind other developed countries.

London Lurker: I don't suppose you know anything about other biologics like Humira in the UK? My friend is on it for Crohns but if Remicade is unavailable for UC here I doubt humira will be.

Tunnelvisionary: Yeah :( I really had high hopes for all my supplements, but sadly no luck. I'm really happy for everyone who found relief from them, they're very lucky. That's exactly what I'm trying to do, be informed enough to have a good discussion with my GI, but everything I've read says methotrexate is no good whatsoever for UC, and I have no idea why they're telling me to take it, but I just have no idea what else to propose. They just keep saying that it can be successful for some people.

My god... I can't believe how close I am to surgery.

^Ah got it. I did not know how the UK's health care system worked. To try Entyvio (in the US) my doctor had to show documentation, to my insurance, that I had failed a biologic.

Thank you guys so much, your scepticism has persuaded me to try convince the doctors not to do this.

Okay so I'm seeing the private practice doctor next Wednesday, and then my regular GI on Thursday. I've printed lots of articles and this is my plan:
1. Show him the studies which say methotrexate is useless for UC.
2. Show him the studies which say Remicade/infliximab is more promising. (I know that funding just won't cover it, but it's worth a shot).
3. Show him that Humira is actually approved in this country for UC (I HAD NO IDEA why haven't any doctors mentioned this I can't believe it! I just looked it up and here it is: https://www.nice.org.uk/Advice/ESNM6)
3. Show him studies on low-dose naltrexone, and mega doses of Vitamin D.

Hopefully he'll agree to something else, and send a recommendation to my regular GI (I can't afford to get a private prescription directly from him). I know doctors hate it when patients come in and think that because of the internet they know more than their doctors, and this will be quite embarrassing, but I just really really really don't think methotrexate is the right choice....

I know Humira isn't as good as Remicade, but it would be better than methotrexate, right? I don't know much about it. Is there anything else anybody thinks I should mention?

Holy crap, I didn't know Humira was approved for UC in the UK. Go for it, girl. I understand the embarrassment of seeming too 'knowledgeable' with doctors; but the thing is, the internet isn't going anywhere. And I can read a medical paper on Crohn's as well as any doctor can, probably. It really isn't difficult to pick up most of the terminology, particularly if you're highly motivated to learn. If a doctor has the hump with a patient for brushing up on NICE's guidelines, then they have a problem with their ego and need to get over themselves. If they want to act like all-knowing gods, too late, that era is over; should've been a doctor 50 years earlier.

If I had any advice, I think it would be to forget asking about LDN and mega Vitamin D; at least don't bring them up in the same appointment that you bring up Humira. LDN, rightly or wrongly, has an 'alternative health' aura which will put off virtually all doctors: very, very few are receptive to that kind of thing. If the Humira idea fails to be accepted, then maybe consider pursuing a private prescription for LDN online. I personally think Humira is much more likely to be effective anyway. Don't worry too much about the differences between Remicade and Humira; they basically do exactly the same thing, block the inflammatory protein, TNF-alpha. Remicade has more studies behind it, but there isn't really any strong evidence that it's more effective than Humira.