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Why do every med stop working...

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Ulcerative Colitis
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Posted 1/29/2015 4:54 PM (GMT 0)
Hi,

As the title says, every time I try a new medicine, it works for about a month and almost brings me to remission, but then suddenly stops working and I'm brought to square one. I'm so sick of it... Oral mesalamine, cortifoam, entocort enemas, prednisone, imuran (which I'm still on, but flaring since end of august) and now pentasa suppositories... They all failed. My symptoms aren't the worst and I can live with them, it is just so depressing to see blood each time I go to the bathroom...

4 days ago I could barely see any blood, I had 1 BM a day, formed stools etc... Now mucus came back, gas and blood in a matter of days... I didn't change anything, Kept taking my meds religiously. Why is it always the same pattern ? This disease is so resilient, I can't believe it :(

It probably leaves me with no choice but to go with biologics, which isn't so bad in itself. It's just that I don't see the point in doing so since it will probably stop working after a couple of months like everything else sad sad

My mother has crohn (had an ileoctomy years ago), my ant (my father's sister) has crohn's colitis and now my other aunt (my mother's sister) had a colonoscopy and they told her she had inflammation in her ileum and were waiting fot the biopsies for the exact diagnosis. IBD is taking over my life, I hate it mad

Thanks for reading, even tough I have no question, it helped to rant a bit shakehead
Posted 1/29/2015 5:04 PM (GMT 0)
You, like me, might just have an aggressive, belligerent immune system that won't be tamed. Remicade got me remission for the first time, after 2.5 years of trying and failing the rest of the meds, so there's hope.

Disease progression is the reason. If your uc inflammation simmers, then it spreads and gets more severe over time. Without having uc under control for a while, it simply gets worse. Summary, uc sucks and I wouldn't wish it on my worse enemy :-)
Posted 1/29/2015 5:05 PM (GMT 0)
Were you taking the maximum doses of those meds?
Posted 1/29/2015 5:14 PM (GMT 0)
Mesalamine was 4g of salofalk a day, cortifoam was 2-3 times a day, entocort 2 times a day, I'm on 150 mg of imuran (I weight 120-125 lbs), Prednisone I sarted at 40 mg for 2 weeks than tapered. A higer dose of prednisone may work, but I'm still full of acne from the last course I did and the weight gain/moon face just disappeared. For something that didn't change anything, the price I paid is pretty high...

I think that the worst is really to get my hopes up because the meds work, and then to be totally discouraged when they stop sorking... Worst feeling ever shakehead shakehead
Posted 1/29/2015 5:52 PM (GMT 0)
This is def the million dollar question! The most agrivating aspect. I know by reading other threads that some may think i am discounting your problem by trying to give you this perspective; but at least you have the option to try biolgics unlike me. So my options are limited but you have that option.


I know it doesnt mean it will work, but if you have to try it, i hope it does for you!

This is the weirdest disease ever! :-( maybe what you are doing now will work
Posted 1/29/2015 6:04 PM (GMT 0)
Instead of 4 grams salofalk have you ever tried 4.8 grams of some of the other oral mesalamines, such as mezavant? Have you tried enemas that weren't foam? I've heard that the foam ones aren't as good and can sometimes make you worse. Have you tried very high dose probiotics? How about supplements and diet changes, or stress reduction techniques?
Posted 1/29/2015 6:22 PM (GMT 0)
So what I'm wondering is why none of your medication history includes 4g of oral mesalamine AND 4g of rectal mesalamine, used simultaneously. That is the best practice.
Posted 1/29/2015 9:13 PM (GMT 0)
My guess is that downregulation of one type of inflammatory pathway might have the effect of increasing another after a while. Just a simple guess though, could be way off base.
Posted 1/29/2015 11:18 PM (GMT 0)
I have the same issue. Things work but then they stop working. unfortuantely for me, remicade didn't work either. Uceris worked but it doesn't anymore. I, like kazbern, do wonder why you weren't on both oral and rectal at the same time? You have a lot of options, try not to stress. I always find my UC gets bad when I am in a bad mental state. I don't know which caused which...
Posted 1/30/2015 1:11 AM (GMT 0)
Thank you all for your support. I know many of you are worse off than me, and you have no Idea how I admire you and everybody who fights chronic illness.

I tried oral salofalk 4g and salofalk enemas (were probably 4g too), but tt gave me nausea and headaches. I'm trying to bring back 5 asa, but my doctor wanted to start slow, hence the suppositories. So far, despite the fact that they seem to loose effectivenes, I have no side effect from them whatsoever. I will probably ask to try stronger 5 asa of another brand than Salofalk. Hopefully it was the coating and other non medical ingredients that I was intolerent to, not 5-asa itself.
Posted 1/30/2015 1:36 PM (GMT 0)
Yep, my UC is just like yours too. Very stubborn, resilient and just a plain ole pain in the butt! Pun intended.

I'm intolerant of most mesalamines but it took years of being on them that caused it I believe. Not that they ever really worked that well in the first place. I was on 6mp, never worked right. Colocorts barely kept things under control.

So when the doc brought up Remicade I wasn't very optimistic. But it was either that or seek surgery from another doc (my GI wouldn't do it unless it was killing me). I've been on it for 3 years and in remission for almost 2 years. It's been the FIRST med to keep me in remission. I'm not complaining that's for sure :)
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