How far along has medicine come in treating UC?

I think about this fairly often, 'cos it's either that or thinking about my life and the latter is even more depressing than IBD. Seems to me like there's been a breakthrough in treating severe, acute UC, but not much else. Before the advent of steroids and emergency colectomies, the mortality rates were extremely high for those hospitalised with UC in the past. Nowadays the mortality rate is practically nil - I haven't heard of anyone dying from UC and you probably haven't either.

So that's good. But what about every other type of UC?

If drugs are so good, then why haven't flare-ups been essentially eradicated? I'm not talking about a cure, but I am talking about a lifelong treatment.

If you say that my expectations are crazily high, then why is taking the meds so important if they don't work that well?

This is what I'm interested in; not whether doctors are receiving bungs or not. I don't care about the financial side of things, which is why I'm poor and you're not.

Don't worry - I'm not sure I understand what I was trying to ask either <_<.

Flares can happen because of disease progression (uc spreads further or becomes more severe). My other gut feeling is, flares can happen because uc hates us and wants us to suffer and be miserable haha.

The mortality rate for patients with ulcerative colitis is no higher than the general population. Most certainly, toxic megacolon, infections like sepsis, severe dehydration or anemia are dangerous if not promptly treated.

Each uc medication has about 60-70 percent odds of helping a given uc patient. So, the more types of uc medication options available, the more chance something will work for each patient.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282853/

Not sure if you've seen this. Its an overview of large scale studies on some of the "big gun" treatments. Its a lot to digest but there's a lot of good info. I eventually plan on shortening the whole thing down into my own notes and will share. I started to today, then gave up due to inherent laziness and a lack of ability to finish anything I start.

My interpretation from my previous post - best drugs are Remicade and Xeljanz/Jakvinus with clinical response rates among those who do not respond to other therapies: approximately 60% and 78% respectively. Remission rates were not all that spectacular among this subgroup of patients although significantly better with the Xeljanz/Jakvinus but this was a smaller study. Read the study for better info.

I wasn't blown away by the effectiveness of any of the drugs to be honest. But these studies were on people who didn't respond to other treatments. Hospitalizations were greatly decreased though (approx. 50% across the board), and rates of colectomy dropped by about 5-10 percent across the board for most of the drugs. I'm paraphrasing greatly here.

How far has medicine come? Well now you don't die, you just live a Hellish life instead.

I actually wasn't really joking, I feel in the same boat. The medical profession is so focused on keeping people alive it takes no time to examine what the quality of that life actually is; and the reality is, it's Hell. For me personally the medicines have been as destructive and unpleasant as the disease itself (hospitalised twice by them) with no long term gains. So it goes.

Renegade88 said...
I actually wasn't really joking, I feel in the same boat. The medical profession is so focused on keeping people alive it takes no time to examine what the quality of that life actually is; and the reality is, it's Hell. For me personally the medicines have been as destructive and unpleasant as the disease itself (hospitalised twice by them) with no long term gains. So it goes.

Really sorry to hear that. I read your other post. I'm not sure what to say about your options. Remicade gave me no unpleasant side-effects at all, but it also did diddly-squat in controlling the Crohn's. It's one of those meds which can work wonders. It has far fewer systemic side-effects on the whole than steroids. As for j-pouch surgery, some people have great outcomes, others have good-to-acceptable outcomes, and a minority - maybe about 20% - have poor-to-awful outcomes. If there is any possiblity you have Crohn's, you should probably go for a permanent ileostomy instead. I had one for 2 years; it's not as bad as you might think. In fact the ileostomy was like heaven compared to what I'm going through now.

That out of the way, I do agree with that not nearly enough consideration is given to quality of life. I suppose there just isn't the resources to consider a patient's quality of life on top of treating them - the NHS is stretched to the seams as it is - but it does make anything to do with seeking medical treatment a deeply depressing experience. You end up feeling like a cog in a completely impersonal machine. And woe betide should you be atypical in any way, as the chances are the doctor will just conclude it's something wrong with you; not the actual disease, med, etc. itself.

imagardener2 said...
I don't know if you've seen another thread concerning hemp oil helping pain. This is not a narcotic drug, available on Amazon apparently.

Is it legal, imagardener? I suppose it must be if it's on Amazon. I'll look it up; thanks.

The problem is the NHS just isn't equipped to deal with chronic illness. They can patch you up sure, but trying to deal with them on a long term basis is arduous in the extreme. Frankly I wanted to get a private consultation and was willing to spend the cash to go to St Mark's but even to do that you need a GP's referral and seeing 'my GP' (actually one of 4) and getting them to put that process into motion is an ordeal in itself.

Ultimately I can only judge a medical body on two criteria: ease of use and end outcome. The NHS has been slow, disjointed and inconvenient (as well as frankly, not 'free' when you factor in lost working days and the hundreds I've shelled out in prescription charges). And the end result after six months of their management (after waiting months without treatment) was I that I was more ill than when I started. I only submit myself to them again because I have no real alternative... I do so with the utmost trepidation. Not only am I ill but I feel like my life is in the hands of a bureaucracy. It doesn't feel like progress to me.

Post Edited (Renegade88) : 1/14/2016 9:32:14 PM (GMT-7)

WorriedUCer said...
That seems to be the major problem. These new biologics don't seem to work, they just recruit enough patients to make significance. The majority of patients don't want toxic biologics but they are expensive and so pharma companies keep only focusing on them and then we get desperate enough that we have no other choice. Why haven't they bothered to engineer probiotics to make them more adhesive, there are so many less toxic options that they refuse to explore.

Vedoluzimab is so far working for me and quite a few others I know, of course, who knows for how long and what the long term payoff may be....After 30 yrs with UC this does feels like a medical change

London Lurker said...
Vedoluzimab is so far working for me and quite a few others I know, of course, who knows for how long and what the long term payoff may be....After 30 yrs with UC this does feels like a medical change

Well, at least vedolizumab has a different mechanism of action, unlike biologic #1, 2, 3 and 4, so that's something I guess. It's not something I can get much enthused about, not least because it doesn't actually seem to work that well for most people who have tried it so far - I'm glad it's working for you.