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Ulcerative Colitis
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Posted 6/7/2017 9:33 AM (GMT 0)
Anyone want to share their medication progression? I feel like I've been pushed to the "Big guns" really quickly.
I've been on Lialda and Immuran as far as maintenance meds. I was on Lialda forever and I don't think it did much of anything. I switched GIs and was started right away on Immuran which worked great. Then this last October (fall for some reason is bad for me) I had a flare....not a bad one, but..immediately it was, well, Immuran doesn't work you need Remicade. I wasn't feeling all that bad and hem-hawed around. Got him to prescribe rectal mesalamine, started seeing a functional medicine doctor and came out if the flare just fine. (Taking two probiotics, Ultrainflamx, Boswelia and Folate since then)

I was feeling great and looking forward to my GI appointment coming up. Now two weeks before my appointment I'm suddenly miserable. If this is a flare he is going to take one look at me and say Remicade. Should I be exploring other options first, or has it really come to that with only Lialda and Immuran in my past? My flares are usually considered moderate to severe. As miserable as I am I'll do what I need to, but I am absolutely terrified of Remicade...I spend too much time online lol. I know to it only works for so long...and then what? I've only had this illness for 3 years.....
Posted 6/7/2017 9:53 AM (GMT 0)
I can really empathize with your position. Since I was 13 I've been on 5-ASAs, first sulfasalazine and then mesalazine, and when I would flare I'd have steroids and always respond. Then I developed a particularly bad UTI when I was 21 and it just felt like it never went away. Long story short I can't take prednisone anymore without excruciating bladder pain that takes months to settle. I tried imuran and had terrible vomiting and an extremely bad reaction, couldn't get out of bed etc. And so I find myself out on a limb, barely managed with mesalazine and no safety net if I flare (rectal meds have never agreed with me). It seems ridiculous to go to Remicade when most times I can almost manage it with probiotics, I just need something a bit stronger, but alas. Have you thought about the antibiotic route? I know some people have success with rifaximin and others take metronidazole. The way I see it, we just need to hold out for a few years then a whole bunch of new treatments will be available.
Posted 6/7/2017 9:55 AM (GMT 0)
What terrifies you so much about remicade? You're already on imuran which has the same side effect potential and risks as remicade does. Both medications have rare side effects (less than 1 percent odds of experiencing one) and do not have common side effects.

If you're flaring and cannot stay in a remission then I'd consider remicade, humira, simponi, or entyvio (all biologics). Remicade is the only UC mefication to put my UC in a remission. I've yet to experience a side effect on remicade.

Nobody's forcing biologics on you. Based on what you describe it makes sense for your doctor to mention them at this point.

Have you had a recent colonoscopy, flexible-sigmoidoscopy, CRP blood test, FCP stool test to assess how bad your flare is?
Posted 6/7/2017 11:17 AM (GMT 0)
Rectal meds and probiotics worked for you but only temporarily. Have you tried monitoring your diet? Keep a food diary to isolate anything that triggers symptoms, gluten and dairy are the usual suspects but any food could be a problem. It works for me.
Posted 6/7/2017 12:28 PM (GMT 0)
are you still using rectal meds OP ? what did the functional med doc say ?
Posted 6/7/2017 5:20 PM (GMT 0)
I was on 2 separate 5ASA's (Lialda and Delzicol), Rowasa, Canasa (Mesalamine enema and supp), as well as Prednisone, then Uceris and Imuran, VSL#3, then Remicade, then Entyvio and finally surgery. Timeline for all this was Jan 2015 - September 2016.
Posted 6/9/2017 9:50 PM (GMT 0)
Thanks.

I was scared of the Immuran too. I remember I cried when I took it. It's just me imagining I'm going to be that one person who gets lymphoma, or a fungal infection or what have you. At this point in the way the week has gone I'm going to be ready for any relief.

With diet, yes I've made some modifications that *help* but only to an extent. I feel better off dairy and gluten and typically stay away from it, but when I'm in a flare up nothing makes a difference one way or the other.

I stopped using the rectal meds as I was told it was when I was flaring...since this flare started I've tried using them but it hurts so bad to do so....and doesn't seem to matter as I can't hold it more than 30 minutes.

Functional Med doc actually did a test on my bacteria levels in my colon it was pretty interesting. While there aren't large numbers of anything bad, some good things are low and I have an extremely low variety. I have different probiotics from him, and like I said all was going beautiful....

Just been stressed lately....and after reading some posts wondering if some dental work I had done has contributed as well. Just getting worse each day and now I have a low grade fever too. GI on Monday....
Posted 6/9/2017 10:42 PM (GMT 0)
"I stopped using the rectal meds as I was told it was when I was flaring...since this flare started I've tried using them but it hurts so bad to do so....and doesn't seem to matter as I can't hold it more than 30 minutes. "

not sure i'm reading this correctly, but indeed if you were told that rectal meds were only for flares, then that person would be seriously wrong - rectal meds are a maintenance treatment -
Posted 6/9/2017 11:35 PM (GMT 0)
Good to know. I had to fight to get them prescribed too.
Posted 6/11/2017 12:35 AM (GMT 0)
I promptly changed docs when the first GI I saw 3 years ago refused to prescribe rectal meds. The next doc gave them to me immediately and I felt 200% better after using them for a few days. I also had trouble retaining during this most recent flare. I realized my afternoons were the least active potty-wise, so I started doing them at that time. Now I'm up to 2x a day, mid-morning and night. I find a hot bath helps before my nightly dose. I also only start with about half of the bottle, so if I can't hold it, I still have the other half to take. I can almost always retain the second half pretty easily, at least for several hours. Good luck!
Posted 6/11/2017 10:31 AM (GMT 0)
All good suggestions Jessica. I did half bottles at a time for a few years and it helped. I've administered mid day before with good results, as i was less likely to poop then. Whatever works as inflammation, retention and UC are frustrating to say the least!
Posted 6/11/2017 8:06 PM (GMT 0)
After 20 years in remission on 2400mg asacol I thought I'd attempt only natural treatment and strict diet and go without medicines completely. It took about 6 months before a flare occurred but it came with a vengeance. After a reprimanding from my GI he increased my asacol to 4800mg with rowasa enemas. Stayed on rowasa for a few months then slowly tapered my asacol dosage getting back down to 2400 after about 6 months.

Once the slightest aggravations happen I restrict my diet accordingly and keep paying the outrageous prices for these meds. Personally, if you can manage without the bigger guns avoid it. Maybe you can postpone your GI appt under symptoms are more under control? At least convince your GI to allow you more time to get it under control (with either rectal and/or increased dosage) before pulling the trigger. Good luck
Posted 6/12/2017 12:20 AM (GMT 0)

iPoop said...
What terrifies you so much about remicade? You're already on imuran which has the same side effect potential and risks as remicade does. Both medications have rare side effects (less than 1 percent odds of experiencing one) and do not have common side effects.

If you're flaring and cannot stay in a remission then I'd consider remicade, humira, simponi, or entyvio (all biologics). Remicade is the only UC mefication to put my UC in a remission. I've yet to experience a side effect on remicade.

Nobody's forcing biologics on you. Based on what you describe it makes sense for your doctor to mention them at this point.

Have you had a recent colonoscopy, flexible-sigmoidoscopy, CRP blood test, FCP stool test to assess how bad your flare is?

^^ What ipoop said--Imuran is the same level of drug that Remicade is, so you are already taking "top tier" meds.

TroubledTurds also makes a good point--rectal meds are a maintinence drug for alot of us and not just for flares. So if they worked but your GI took you off of them, then I would try adding them back first to see if that did the trick.
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