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Need to make it 3 more weeks for study

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Ulcerative Colitis
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Posted 8/4/2019 9:35 PM (GMT 0)
I am enrolled in a study for abt-494 for my UC. I'm in a major flare and have been for a month but I'm not allowed to take anything for it because of the study. Last year I had a flare and was hospitalized with pancolitus and burned out colon with psuedo polyps. It was really bad and I was basically bedridden for a few months. Pred did nothing nor did and of the mesalamines.

Anyway, now I'm basically not eating just doing protein shakes waiting for my colonoscopy and then abt-494 treatment.
Is their anything you all think I could do to prolong the progression of the UC before I get the abt drug? As I said, I can't take any drugs for it as thats not allowed. I'm just worried that I won't make it 3 more weeks and will end up in the hospital before the drug gets dispensed to me.
As of now I'm starting to get pretty weak and I'm going 15 times a day with a fair amount of blood and brown/black liquid.
Any comments will be appreciated.
Thanks, Billy
Posted 8/4/2019 9:40 PM (GMT 0)
Have you had stool tests? If you can't take drugs, the best you can probably do is what you're doing. Eat light, stay hydrated and take it easy. Can you call and see if they can start you sooner? Can you do other meds in combo with the study drug once you're on it?
Posted 8/4/2019 10:29 PM (GMT 0)
Yes, I've had stool tests. Also chest x rays and blood tests. They can't start earlier because of test protocol. They need x amount of diary info etc. Also the drug must be taken alone as to not effect the study results.
Thanks for responding.
Posted 8/5/2019 2:14 PM (GMT 0)
Is this a trial with a placebo control group? I do not think you can afford such a trial. It borders on unethical to admit severely afflicted patient to trials where continuing existing meds is not allowed.

Do you know you will for sure be getting the drug?
Posted 8/5/2019 4:41 PM (GMT 0)
Maybe switch away from protein shakes.....a lot of protein shakes are hard to digest. I had issues with them with my UC, and even now with my jpouch I stay away from them because they are rough on my system....
Posted 8/6/2019 2:58 AM (GMT 0)
I have to agree with DB. Given your history and this current flare it seems too risky for you to prolong any sort of meds for a study in which you may be getting placebo. What advice do your GI and study nurse have for you at this point? It doesn't sound like it's safe for you to risk further damage to your body waiting for a study (placebo or non) when you need rescue meds now. You don't mention your med history but there's plenty of biologics to start almost immediately. Take care of yourself.
Posted 8/6/2019 2:35 PM (GMT 0)
I'll agree with the choir above. Not treating your flare sounds like hell, all to be in a study with a 50/50 chance of you being within the placebo group and getting no relief. I'd reconsider enrollment, dropout, and get this flare stopped now. Flares tend to get exponentially worse the longer we ignore them.

What meds have you tried/failed? What are you currently on?
Posted 8/6/2019 4:50 PM (GMT 0)
I agree with what most of you have said. The risk seems pretty high. My thoughts were that if i went to a GI for a biologic it would still take at least a few weeks to get it as they would have to test first. (let alone how long it takes for an appt)
I have a 66% chance of getting the drug in this study. Also, I have no health ins and was previously with the dept of health for my healthcare. Since then I've moved and I pretty much have nothing except this study at the moment.
Last flare I jumped on pred right away and it did absolutely nothing and I ended up in the hospital for 2 weeks and they loaded me with pred and still nothing. I was then sent home on more pred and still stayed in bad condition for another 2 months. I was throwing up constantly as well as black liquid 30 or more times a day. I think it eventually just burned itself out and I slowly recovered. (no thanks to the pred)

Drs and dept of health said that I need to step up to a biologic, (humira) next time I flare. The dept of health put me in a study but I was in too good of shape by the time the injections would start so they booted me. This time I got into this study as soon as the flare started but its still 8 weeks before the drug can be administered. I have 3 more left but I'm starting to get much worse and I'm sure I'm heading for pancolitus again. But if I thought pred would help, I would have probably just gotten that instead of the study.
Has anyone had pred not help at all one time and then work OK the next?
Every flare I've had, which has been around 5 in 7 years, has gotten harder and harder to put down. The last 3 times have been pancolitus with hospitalization.
If I thought I could get something other than pred fat, I would drop out. Does anyone know a way of fast tracking this? I can pay for a walk in GI appt if I had too.
Thanks, Billy
Posted 8/6/2019 5:24 PM (GMT 0)
An ER visit to a hospital with a good GI department might result in a quick turn-around referral. Also trying a biologic that has a patient assist for uninsured patients might be wise. But this could still all take weeks.

But if you are not seeing a GI, who put you up for the trial?

Many biologics can take a while to work. It is possible that this new drug takes weeks or a few months to work. Combined with a 34% chance of not getting the drug, it is all very risky.

As for pred, while some are refractory, c-diff has to be suspected when pred does nothing - even if you test negative for c.diff.

If I understand, you have no meds between flares, or anything other than pred during flares. You have just burned through past flares. This is sad.

A new GI is going to want to scope you, and run blood and stool tests. This will be expensive without insurance. Still, finding a GI, maybe through an ER that does some initial testing (more likely to do MRI than c-scope) and getting meds might be better than rolling the dice on this trial.

good luck
Posted 8/6/2019 6:12 PM (GMT 0)
Sounds like you are in a difficult position, having insurance is essential for us. I am not sure of your situation, but can you apply for medicare/medicaid? Many of the medication manufactures, like is available for humira, offer compassionate-use programs for those otherwise cannot afford their meds. Certainly you can reach out to them and ask.
I would also assume you need some labwork (stool test to look for C Diff, stool test for inflammation, bloodwork) and possibly a colonoscopy to see what is going on. All of which would be expensive.

No two flares are alike, pred could work this time and is inexpensive.
Posted 8/6/2019 6:30 PM (GMT 0)

DBwithUC said...
An ER visit to a hospital with a good GI department might result in a quick turn-around referral. Also trying a biologic that has a patient assist for uninsured patients might be wise. But this could still all take weeks.

But if you are not seeing a GI, who put you up for the trial?

Many biologics can take a while to work. It is possible that this new drug takes weeks or a few months to work. Combined with a 34% chance of not getting the drug, it is all very risky.

As for pred, while some are refractory, c-diff has to be suspected when pred does nothing - even if you test negative for c.diff.

If I understand, you have no meds between flares, or anything other than pred during flares. You have just burned through past flares. This is sad.

A new GI is going to want to scope you, and run blood and stool tests. This will be expensive without insurance. Still, finding a GI, maybe through an ER that does some initial testing (more likely to do MRI than c-scope) and getting meds might be better than rolling the dice on this trial.

good luck

Yes the ER is an option. The protocol they use is steroids though and I'm really trying to avoid that.
I was not put up for a trial. I simply called them and then they got all my records from the hospitals I've been in and my last GI doc.
I know biologics can take awhile to work but what else can I do?
How can you have c diff if you tested negative? Is there a better test that is more conclusive?
I have meds that I could take in between flares. I have apriso, sulphasolazine, and a couple other mesalamines. They never have done anything so I just stopped taking them. I was on them for prevention when I had my last flare.
What other meds would you suggest that could be given out quickly and be effective to stop a flare? The GI thats involved in this study is by proxy my new GI because hes giving me the colonoscopy and I'm now his registered patient. If I don't make it to the study or if the study fails, he can prescribe for me as he has all blood, stool tests, past med records and will be doing my colonoscopy.

Thanks..
Posted 8/6/2019 6:36 PM (GMT 0)

iPoop said...
Sounds like you are in a difficult position, having insurance is essential for us. I am not sure of your situation, but can you apply for medicare/medicaid? Many of the medication manufactures, like is available for humira, offer compassionate-use programs for those otherwise cannot afford their meds. Certainly you can reach out to them and ask.
I would also assume you need some labwork (stool test to look for C Diff, stool test for inflammation, bloodwork) and possibly a colonoscopy to see what is going on. All of which would be expensive.

No two flares are alike, pred could work this time and is inexpensive.

I was supposed to get set up with humira before but the dept of health instead put me in a study which as I stated before I got booted for because my flare was already improved.
I hate hate hate pred. I have taken so much of it and I feel it has ruiened my life in some ways. The side effects on me are horrible. I'ld almost take anything else besides pred.
Posted 8/6/2019 7:20 PM (GMT 0)
It’s not necessarily as cut & dry that biologics take a while to work. I was overnight better on Remicade. Flared when I got my 1st dose and the next day went to the mall & dinner. Humira took the edge off a flare within a week. Entyvio didn’t do a thing. The treatment for this disease is as individual as the disease itself.

I really hope you get relief very soon.
Posted 8/6/2019 9:40 PM (GMT 0)
c-diff stool test are infamous for false negative. Use 2 or 3 negative tests a week apart is considered conclusive. But, I am not so sure. I hear many people report recurrent c.diff, and I have to wonder if it is not all only long occurrence.
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