not getting better-anyone know of trials

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jayce
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Date Joined Nov 2007
Total Posts : 382
   Posted 1/14/2008 3:09 PM (GMT -7)   
my daughter had about 2 weeks since november where it looked as if things were going in a good dirction, but here we are again with all night diarreah and blood. she will be coming home thursday to see her dr, and the dr will determine if she will do a colonoscopy friday or early next week.
if anyone knows of any trials out there that are real and being done by reputable institutions please let me know, i know there are still more drugs to be tried and i'm sure we will be doing that, but i need to know what's out there i know her disease is advanced and i don't want more time to go by without knowing all i can
and more tissue is damaged. if there are trials worthy of it i 'd like to see if we qualify before she ends up on the drugs that usually exclude you from a trial. i read and read, but now i feel as though i am failing her. i've got to do something-thanks.
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 1/14/2008 3:20 PM (GMT -7)   
Are there foods that make your daughters condition worse like sugars, milk, etc and if so, is she avoiding them? Culturelle probiotic is an excellent probiotic, I took the prescribed two pills a day while following a strict diet...I had solid bm's shortly afterwards. The Danon yogurt contains sugar, which may or many not be good for her...I know I can't use it.


NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


kb5
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Date Joined Jan 2007
Total Posts : 1015
   Posted 1/14/2008 3:30 PM (GMT -7)   
PLEASE,
You are not failing your daughter. You are doing everything you can to help her, this disease is not your fault and not her fault. Being there for her is doing more for her than you know, probably more than she can express. This disease is hard for all of us and I think more so for our families sometimes. Not being able to take away the pain of someone you love is worse than being in pain. I'm sure she knows that you would take this for yourself if it meant she could be disease free.

As for trials...
I believe there is a humira trial going on now. Have you asked her Gi about trials? mayo clinic also has a few going on if you go to there sight you can get a better idea of what they have

http://www.mayoclinic.org/ulcerative-colitis/clintrials.html

Where are you located? My GI does tons of trials but we are near chicago. I've done a few with great results.

Has her GI discussed remicade as an option?
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 1/14/2008 3:33 PM (GMT -7)   
I agree with NBT about Dannon Activia-- it has added sugar. If your daughter is trying to get good active cultures by eating yogurt, she should choose an all-natural brand, such as Brown Cow nonfat, or StonyField Farm or Horizon nonfat. Most of the others contain added sugar &/or starch, plus flavorings. RE clinical trials, the gastro your daughter is seeing does clinical trials-- so you can ask her about them. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/14/2008 3:37 PM (GMT -7)   
kelly, thanks- i will look up the mayo clinic- i hadn't asked her dr yet becuase i thought this being her first flare that she was on the way out of it, but i will ask on thursday and research her instituion too
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4815
   Posted 1/14/2008 3:45 PM (GMT -7)   
Please,

Most Clinical trials there are patients who get a Placebo....which means that your daughter would not get the actual drug. I do not think it is worth the risk of not getting the drug, especially for someone who so new to the disease.

If you are in the NY area go to Mount Sinai. They have the best GI's and resources in the NY Metro area. Most of the clinical trials go through there.

Please don't rush into any decision, think it through..... most of our meds take many months before you will begin to see improvements.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/14/2008 4:13 PM (GMT -7)   
I am not sure about what trials are out there, but I wouldn't risk being on a placebo and getting sicker. It seems like the next step medication-wise would be to try Remicade or Humira. Does your daughter ever take anything like Lomotil? It is not a cure, but sometimes when I am having too much D, the lomotil stops it so my poor colon and rectum can rest. Sorry to hear she's not better. Sometimes the medicines just don't work, it's nobody's fault.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/14/2008 11:42 PM (GMT 0)   
It's not your fault, as mentioned above, and please don't panic. It can take a long time to get things truly turned around. IBD is not something that turns on a dime, in most cases. For many of us, a lot of trial and error, a combination of meds, probiotics, dieatary changes... and much patience is involved.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/14/2008 6:28 PM (GMT -7)   
PLEASE, I’m sorry to hear about your daughter. From your signature it appears she has not tried most of the conventional meds and it has only been a few months since her diagnosis. Under these conditions she may not be eligible for any trials. Most trials are looking for patients that do not respond to conventional medications and have had a diagnosis for a minimum amount of time, usually 3 to 6 months. Your daughter should continue to look for something that works for her and give it a reasonable amount of time. Many treatments take weeks to 6 months or more to start working.
 
When I was first diagnosed it took me over 2 years to achieve my first remission. That lasted about 2 ½ years. My current flare has lasted almost 3 years. I’m currently in my second clinical trial it has not helped yet. I don’t understand why so many here are against clinical trials because of the possibility of getting the placebo. Most trials eventually give you the real treatment.
 
A list of clinical trials for UC can be found at:
 

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/14/2008 8:35 PM (GMT -7)   
Old Hat -natural yogurts are dairy right? we had her off dairy until the dr told us to try the dannon acteviate, she was already beginning to move backward, but i'm wondering if the dannon pushed her over the edge, i think it's more the dairy than the sugars because she was allowing herself a bread here and a pasta there,and some cookies we were baking that were wheat and dairy free but had sugar as an ingredient while she was better, but no dairy, now we will evaluate the whole diet and stick to it, she will have to stay home for a few weeks and forgo this wintersession so the dr can get the meds up to par or not, , but if she has any chance at going back to school for the spring semester we need the next couple of weeks to stop this bleeding.

paul, what kind of trial are you in?
how long can people flare does a flare mean you are bleeding?-thanks
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time


oilersfan
New Member


Date Joined Feb 2006
Total Posts : 5
   Posted 1/14/2008 9:33 PM (GMT -7)   
I've been without a flare for a little over 4 years, and I still show blood occasionally. People can flare for a long, long time it seems.
First flare in April 2003
Salofalk 6 tablets/day
Currently on 55 mg prednisone tapering at 5 mg per week


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/14/2008 9:40 PM (GMT -7)   
PLEASE, has she been tested for lactose, sucrose, gluten, etc. intolerance? This might be something to ask about. And since you're going to a major IBD center, they're probably participating in a lot of the clinical trials. But I agree that most trials only take people who have failed at the therapies which are already approved.

You've said you're afraid of drugs like Imuran and Remicade, but most of what is currently being tested is likely to have potential side effects as serios as they do, and perhaps more so. For all of us, it becomes a matter of weighing the possible bad effects of a treatment against the certain bad effects we're already suffering.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/14/2008 10:29 PM (GMT -7)   
Please - A flare doesn't necessarily mean you're bleeding. A flare means your disease is in an active state, meaning there is inflammation and/or ulcers. I believe having any UC symptoms usually means you're flaring (blood, D, excessive mucous, urgency, etc.), unless, of course, they're being caused by something else, like IBS, lactose intolerance, an infection, etc. If I'm wrong about this, please feel free to correct me anyone. I think the length of flares really varies from person to person and can even vary with each individual throughout their lives.

I agree with the above posts that it takes time for UC meds to work. It took me a few months of consistent Asacol and Rowasa to get my symptoms to a manageable point. Still not quite into remission, b/c I have some mild inflammation in the rectum, but I'm very close. I know it's really hard to be patient with this, especially while your daughter is suffering. Also, I personally would feel safer going on 6-mp or Remicade than going on a trial, because these drugs have already been tested.
23 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/15/2008 6:14 AM (GMT -7)   
If you participate in a trial and the experimental drug works, when you leave the study, aren't you back to where you were before? It's not as if they can send you home with a non-FDA approved drug.

The best bet for getting a handle on the disease is to work with a doctor and then supplement the doctor's treatment with whatever natural/alternative treatments your daughter wants to try.

I know this sucks (a lot) but I would stick with proven drugs and stay away from drug trials for the time being.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 1/15/2008 8:29 AM (GMT -7)   
Traditionally gastros have ordered flaring patients off dairy, as if it caused UC. That's silly! Many people suffer discomfort after consuming dairy if they are lactose-intolerant; it's pretty easy to determine whether that affects the individual, in which case one can try lactose-free dairy products and/or yogurt containing beneficial organisms. There is also the option to be tested for food allergies. The point for UCers is to keep up calcium/ vit D intake, especially while on steroid drugs.
I agree with the above comments that clinical trials are something to consider if/when a patient fails to respond to conventional meds. Your daughter was diagnosed only 2 months ago; she hasn't exhausted the conventional meds yet, though it might seem that way from all the enemas & suppositories 2nd gastro prescribed. Nor has she been using this stuff in combo with cautious diet & rest long enough to say definitively that they don't work!!!!!! I strongly believe that a UCer cannot be running around here, there, & everywhere while trying to put out a flare. You have to think meds, diet, rest, & then prioritize other activities, including medical appointments, to conserve strength. I write this sympathetically, thinking back to my 1st flare, when I wasted energy going to hospital emergency room, where not even the resident on call could get hold of my gastro on the weekend! We all tend to freak out over D with blood, but we do better to calm down, take the meds, & rest as much as possible-- while trying to think positively about healing. It takes time-- so PATIENCE is necessary. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/15/2008 8:55 AM (GMT -7)   
I couldn't agree more with Old Hat. Patience and diligence are the keys to achieving remission. This isn't a disease where you take a pill for a couple of days, and the symptoms disappear. It can take months for the meds to kick in and during that time, it can be one step forward and two steps back.

I appreciate that this can be very difficult to accept. I was never sick with anything more than the common cold before I was diagnosed with this disease, and it really took me a while to wrap my arms and brain around it.

Your daughter has to hang in there, and she has to be willing to try the more conventional medications. She is nowhere near ready to be a candidate for the drug trials. There are many other medications that she should try before it can be determined that nothing is working, and she should resort to the clinical trials.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/15/2008 9:12 AM (GMT -7)   
I took this blood test, it gave me a print-out of my food sensitivites. Unfortunately, my insurance wouldn't cover it and it was expensive, but worth it. It turns out that I am highly "reactive" to apples and oats, things I was eating daily. Now I rarely have a migraine, before the test I had them almost every day. It has also helped some with diarrhea, although when I am flaring bad, nothing helps. I got the "True Guts" movie yesterday, I think it would be a good thing for you to get, it seems mostly to target the younger/newly diagnosed UCers and their parents. Also, as many others said, it usually takes a while on the medicines to see effects. It took me 3 months or so on Asacol till I felt any better. It is even harder when you are flaring bad at the time to see a change, I think. The only med that will give you an almost instant change is Prednisone, and maybe Remicade.

Link to the allergy testing:       http://www.nowleap.com/  


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm

Post Edited (princesscolon) : 1/15/2008 9:16:01 AM (GMT-7)


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/15/2008 10:43 AM (GMT -7)   
julee70 said...
If you participate in a trial and the experimental drug works, when you leave the study, aren't you back to where you were before? It's not as if they can send you home with a non-FDA approved drug.

The best bet for getting a handle on the disease is to work with a doctor and then supplement the doctor's treatment with whatever natural/alternative treatments your daughter wants to try.

I know this sucks (a lot) but I would stick with proven drugs and stay away from drug trials for the time being.

There seems to be a lot of misconceptions about clinical trials. There are 4 phases. For more information go to:
 
 
 Phase 3 is the one that is conducted just before a drug is approved. By this time some information is known about the drug, and the risks are not as great as in phase 1 and 2. Also many drugs are already approved for other conditions before phase 3 studies on UC are conducted. I have only participated in phase 3 studies and both I have been on agreed at the beginning to provided the drug/treatment if it worked until it was approved by the FDA or Health Canada or until the study was terminated in the case of it not being approved. After it is approved your drug plan should pay for it.
PLEASE's daughter is not ready for a clinical trial.

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

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