Venting

I love venting...I feel this nightmare doesn't end. W.T.F.

Why can't I achieve remission, what in the world is going on. Let's recapitulate the med protocol.

I'm on

-5ASA (Asacol, oral stuff)

-Remicade (max dose, every sx weeks)

-LDN (transdermal and oral, tried them both, I'm on oral currently)

-Diet (gluten free/dairy free)

-Chinese Herbal Tea (once per week day)

-Chiro

-L-Glutamine

-Supplements

-Probiotics

-Fecal matter transplant (official trial)

W.T.F. man, this stuff should quelch any flare dead in it's tracks. I barely control the stuff...whaaaaaaaaaat??!

It's like freaking WW2 Stalingrad.

Like I mentioned higher on here, I'm on the fecal matter trial in Hamilton, Ontario. I had my second infusion last week. No change so far, I hope I'm on the placebo to be honest. I want stuff to work. After 6 infusions they will tell me if I'm on the placebo or the real stuff. If I'm on the placebo I will have to go for 6 more of the real stuff for sure.

Like Andrina said, "My life is out of control"

 

I think the thing is there is this "promise/hope of remission" with each of these new drugs but the simple fact of the matter is if you look at the percentage of people who are actually achieving remission in any of the clinical trials for any of the drugs we take, it is often less than 50% of participants who truly achieved a remission (sometimes far less) for the drug. I laughed at a Humira ad on tv where it said "34% achieved remission in fine print and the commercials theme was "remission is possible" (yeah for the select few ). Sucks to be time-and-time-again one of the ones who slips through the cracks each time, but you, I, and others, unfortunately seem to fall into this category. Frigg'n disease gets to us all... yeah the drugs improve us some but not enough to avoid crapping our pants on occasion.

If you look at the below information, 41.2% of people at 4.8g Lialda achieved remission

Dose--------------------Study 1..............Study 2 n/N (% achieving clinical remission)
LIALDA 2.4 g/day--------30/88 (34.1%).....34/84 (40.5%)
LIALDA 4.8 g/day--------26/89 (29.2%).....35/85 (41.2%)
Placebo-----------------11/85 (12.9%)......19/86 (22.1%)

Humira

............................Trial 1....Trial 1.....Trial 2....Trial 2
............................Placebo..HUMIRA...Placebo..HUMIRA
Clinical remission.......12%......36%.......7%..........21%

What supplements and probiotics are you on?

"What supplements and probiotics are you on?
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"

Well, I've been on many...Let's see:

I've been on VSL 3, Critical Flora, Ohira, Natren and some other brand the name excapes for the moment.

Supplements? Well, the usual crap. Omega 3, vit D, multi vitamins, tumeric, anastha something,

"Keep Trying, change your Gi."

Change my GI? Why in the world would I do that, I like my GI.

I wonder if there's such thing as doing to much?

Sometimes there is nothing we can do and nothing works. It's not like you are not fighting the good fight....you are. This disease sucks point blank and there is no rhyme or reason to it. I fought the good fight until I was sick of it all. And now after my surgery, I don't have to fight anymore because it's done and over with. The surgery from hell was totally worth it not having to deal with UC anymore.

Hang in there....I certainly hope you find something that works because I know you are not too keen on the idea of surgery.

Hey Somedude,

I feel the same way as you do. I have been stuck for over two years, and I am not even fuctional atm. We will feel better sooner or later. I know how frustrating it is to try everything with no results.... Hang in there

Somedude, what else do you think you can take? What about Imuran? Have you tried that with any luck? If the biologics aren't working, LDN, or anything else, will you consult a surgeon to see what your options are? I'm not saying go for it right now, just a thought.

therearemiracles said...
hi somedude,
Are you supose to be on LDN while on remicade, I thought they cancelled each other out? Have you ever talked to Skip at Skip's pharmacy in Boca Raton Florida? He's so awesome and knowledgeable about LDN. I didn't think you would see benefit form LDN while on a immunosuppressant.

No, they do not cancel each other out.

"We will feel better sooner or later."

lol, how do you know? I don't want to end up like Old Mike posting random articles 30 years later and still going in the pants.. hahah

Taking a jab at you, Mike, love you bro.

Somedude, I feel exactly the same way. Nothing works for me really other than low dose pred. i am not planning on surgery anytime soon because the stats are 1 in 10 that even if it is definitively Dx'd as UC- not even the slightest trace if it being indeterminate vs crohns- that it still ends up as being crohns all along, post surgery, and then one is back on the meds merry go-round even after surgery. For those with a solid UC dx, 1 in 10 may be an acceptable risk, but mine is a bit indeterminate, so to h&ll with taking that risk any time soon. So, if I cant get off pred, I make do with as low a dose of pred as I can as my maintenance therapy to avoid flaring, while I keep on trying to fix this darned thing. Hoping to get off low dose pred and then just rely n uceris for flares, while awaiting some better new therapies to get approved.

If your symptoms neither got better nor worse with the FT trial, it sounds to me that you got the placebo. You'll know soon enough- hang in there. Have you considered xifaxam/rifaxamin or triple antibiotic therapy? My experiences with abx have all been oretty awful so I am too chicken of the latter. I did try xifaxan but it gave me liquid D right away and I stopped after two days.

Oh, one other thing- have you ever tried stopping the 5ASAs for just a few days to see if maybe they keep making you worse? I am sure you have, but just checking.

Post Edited (Probiotic) : 2/26/2013 4:06:14 PM (GMT-7)

SOrry you're not getting better somedude. I can relate, I was in a pretty relentless flare up before I got into remission with 6mp. It took me way more than 3 months with 6mp, I was bouncing up and down with my wbc dropping so low I couldn't leave the house. I thought I would never get off pred. Eventually I took an antidepressant and I feel like my outlook shifted a bit and eventually I did improve. I don't know why or how and medically, it didn't make much sense that after all that time on 6mp, suddenly it was managing my condition on 25mg but it happened. I hope you can get this thing under control. I think the other sad part of all of this is that the medications don't help everyone. I have seen some people here fight extremely tough battles, trying every alternative and mainstream treatment possible without getting relief. There has to be something that will work for you. Would you try something like welbutrin?

"Would you try something like welbutrin?
--------------------------------------------------------------------------------
"

lol why would I try that, I'm not depressed.

Somedude I feel the same way- I am flaring again, and have not been in a non pred-maintained remission for a year now.... Freakin sucks. Hoping to hear you were on FT placebo. Both my GI and integrative MD are out of ideas. Just sympathizing that's all.