Looks like my CRP levels are easily high enough for this study. I don't know whether to be excited that I might actually get to participate in this, or feel badly about how bad my blood work and inflammation levels turned out to be.
:dance:Update: I'm in Vancouver for my week 8 visit. I have been deemed a responder and will receive two more months of what I am getting. My lab values have ALL improved. Some more dramatically than others. But it seems that I am on the right track. Will keep you all posted!
I don't think ssi is a curative therapy by itself. In the compassionate use program, the lady I spoke with said 7/10 of patients showed improvement, 4/10 went into remission (but didn't stay in remission), and one patient is still in remission. I think those were the numbers.Too early to tell yet SidS but there have been people in the compassionate use program that I believe are cured. One of which has been 100% free of disease and off meds for coming up on 4 years. Put it this way, if CD is caused by an infection or immune deficiency (which is looking to be the case as science is slowly showing) then it could indeed be a curative therapy as it addresses the underlying problem.
Actually all 10 showed improvement, 7 of 10 went into remission, and 4 of those 7 have remained in remission.I don't think ssi is a curative therapy by itself. In the compassionate use program, the lady I spoke with said 7/10 of patients showed improvement, 4/10 went into remission (but didn't stay in remission), and one patient is still in remission. I think those were the numbers.
There was a theory I heard recently, that MAP may be acting like a virus, in which, it makes the body more susceptible to certain illnesses, almost like AIDS. MAP lowers you immune systems response to bacteria like Ecoli.
Correct me if I'm wrong, but isn't that what this vaccine does? It is a harmless injection of dead ecoli which in theory will evoke antibodies to Ecoli in your body that clean out your system of the bad E Coli.
Now, combine this vaccine, with the MAP vaccine that is showing great promise. Sort of like the MMR vaccine that goes after 3 distinct illnesses. Combine the ssi vaccine with the MAP vaccine, THEN I think we got something pretty potent. Add on top of that dietary changes that limit red meat, milk, and dairy intake and boom.
This stuff going on right now is so important I don't think it's talked about enough.
I remember like 10 years ago I used to go onto Crohns forums designed for teenagers and people were talking about MAP then. I brushed it off and never bothered to look into it because there was no such thing as a cure for crohns and to even THINK that is heresy. I hope this is not what happens again with map. That is, it gets shoved under the rug for another 10 years and some forget about it, like me.
I stand corrected.Actually all 10 showed improvement, 7 of 10 went into remission, and 4 of those 7 have remained in remission.
Definitely.Hi
Just a question for anyone involved in the trial is there any point in getting the labs done for the trial if your Crohns isn't particularly bad at the minute.
Thanks
That was the main lab that had improved for me. My fecal calorotectin went from over 800 to 311 a year ago it was upwards of 1200.Sorry to hear you guys aren't all 100% that's really hope shattering, but have you had scopes don since to see the how you're doing on the inside? The reason I ask is because I've been told by a few GI that as many as 80% of people with IBD will also have IBS symptoms making it very hard to distinguish when you're in remission (classified by the level of inflammation). Maybe it's worth getting some cal protectin tests done to see what the lvl of inflammation is currently at? Anyway once again thank you all for taking a part in the study and I truly hope things come right for all of you
Bummer I wish you were doing better. That must be really frustrating. Hopefully you start improving. If not, as hard as it has been, thank you so much for taking part in the trial. It's important that these studies be done.I am obviously very disappointed as I had very high hopes for this trial after reading about the compassionate use cases. Unless, I see some miraculous improvements in the next month (which seems doubtful right now as I am still going 8 times a day with blood, mucus and pain), it looks like I will have failed this treatment. =(
Does anyone know of anyone on this medicine that took VERY long to respond to the medicine (i.e. a month) or am I definitely a failure to the treatment?
When you say you've taken high doses, you've tried higher than the prescribed amount?Ya the doses are not the prob. - I have taken high doses and still no response. Would like to hear others experiences and thoughts
That's certainly possible. I've always suspected that Crohn's disease is caused by someone different factors for different people. Time will tell on that I guess.pmitra,
the vaccine might not be working because of where your disease is located. You might have something different than everyone else participating.
What kind of magnesium do you take? Oxide? Citrate? Glycinate? Something else?David, I do take magnesium. I was considering taking a higher dose but I'm afraid of over dosing on it. Is there an amount that is recommended?
Maybe combining the paleo diet with your current SSi therapy would be a good idea? I think when people get bad disease, they have to fight the illness from many different directions. I think people with Crohns should be trying the very hardest to continually eat as healthy as possible.David, I do take magnesium. I was considering taking a higher dose but I'm afraid of over dosing on it. Is there an amount that is recommended?
Joshuaa, I have tried SCD and paleo. I was on SCD for almost a whole year. Did it completely. No cheating and tried their supplements and everything they recommend as well. It did nothing except cause further weight loss for me. Paleo helps me feel more energized but does nothing for the Crohn's symptoms. I have also tried the makers diet, that was expensive to do and did nothing, actually made me worse. Too much fiber I think. I also have tried fecal transplant and glutathione infusions with hyperbaric therapy. Neither of which did anything at all. I tried upper cervical chiropractic too. That helped the joint pains but not much else. I was recently looking Into cannabis. Do you really think it's worth it? Any idea where to get it from? I was also thinking of trying essentials oils or camels milk. Any ideas on those? What is fmt?
The one thing that helps me feel better sometimes is accupuncture. I have a fantastic acupuncturist who knows just where to treat me to help. But money is toght now after all these treatments that didn't work and that's another expensive one!
Agreed. SSI isn't a miracle cure, it is a potential treatment option and everything from dose to duration still needs to be worked out. We're very early in the evaluation phase of this potential treatment. If this phase I/II trial shows promise (which I am about 95% sure it will) then the phase III trial will be much more extensive and likely test different dosages, durations, and a host of other variables.Maybe combining the paleo diet with your current SSi therapy would be a good idea? I think when people get bad disease, they have to fight the illness from many different directions. I think people with Crohns should be trying the very hardest to continually eat as healthy as possible.
I wouldn't be touching cheeseburgers or anything like that, I think you mentioned you ate one earlier in the thread.
I would have liked to see some improvements in you too I'm frustrated for you, so I can only imagine how you're feeling.Good point David - I do admit that I have not been the healthiest in my choices of food but still I'd like to have seen at least some minor improvements by now. Not too sure about your 95% confidence that SSI will succeed.
When you're able, will you please check the back of the bottle and see what percentage of the "citrate" is actually citrate and what percentage is oxide? A LOT of supplement manufacturers are actually quite unethical and call it citrate when the majority is oxide.Thanks for the info everyone. I am feeling encouraged I appreciate you all more than you know!
David, I am not at home right now to check but I believe I take magnesium citrate.
Here's an example of what goes into the CDAI calculation: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0048967/David - how do you know the CDAI is so much better for people? Wendsjoy has better fecalprotectin, but that's not CDAI. Fecalcalprotectin can go up and down randomly.
I suspected as much. Magnesium oxide is by far the worst absorbed form of magnesium and with your symptoms, I suspect you may be losing more Mg than you take in.David, I take 250mg of magnesium oxide
Almost :lol:I'm hoping they're all feeling so good they're too busy enjoying life ;p
Im so sad to ear that. I have same disease location as you so I know excatly what your symptoms are. Are you taking other medications along the SSI? Are you allowed Pred?Hi Guys,
So for me so far, the news is not good. I am finishing one full month on the open label (meaning I am getting the real med). I started out with about 9-10 bowel movements a day with blood, mucus, spasm, pain, etc. My disease is in the colon and it is in its worst state in the left side of the colon - rectum and sigmoid colon. After one month of SSI, I am pretty much in the same state. There were a couple of days at week 3 where I was down to 4 bowel movements a day (but still bloody and painful) and I got very excited that I was improving. But, then I went right back up to 7 and 8 the next day and then 10. Maybe there is some basic improvement as I go more like 8 times a day now but that is obviously still very bad and probably not improvement.
I can definitely say that I did not get the experience reported in the compassionate trial where people saw full resolution of symptoms within one week of taking the medicine. I do not understand how these folks all did so well. Those results do not seem to have translated in the trial as none of the people on this forum (Wendsjoy, Bees, Treveor) had full resolution of symptoms in one week. In fact, and correct me if I am wrong Wendsjoy, Bees, and Trevor, but they are still having ups and downs and it took a while to see even the initial improvements.
I am obviously very disappointed as I had very high hopes for this trial after reading about the compassionate use cases. Unless, I see some miraculous improvements in the next month (which seems doubtful right now as I am still going 8 times a day with blood, mucus and pain), it looks like I will have failed this treatment. =(
Does anyone know of anyone on this medicine that took VERY long to respond to the medicine (i.e. a month) or am I definitely a failure to the treatment?
Good to hear Trevor that you are doing well - question - when did you start feeling improvements? what week? I am at week 5 and a half with no improvements - do you think I am a fail?
Also, how have your fecal calprotectin numbers fared/improved?
Anywhere from 2016 to 2018 if things go reasonably smoothly, was my understanding. I think that was in reference to Canada, though.Provided all goes nicely, how long until this treatment is available?
You're a wise man Trevor. I agree about the vitamin D (sun) in addition to the magnesium. As, in theory, SSI are improving the immune response, it makes sense to make sure that two of the most important nutrient components for a healthy immune system are in ample supply.A Paleo-ish diet, magnesium, fermented foods and probiotics + sun, sleep, less stress and more exercise. Pump up that immune system!
Hi Trevor, when did you start your diet?A Paleo-ish diet, magnesium, fermented foods and probiotics + sun, sleep, less stress and more exercise. Pump up that immune system!
My brain exploded when I learned that vitamin D is actually a class of steroid.You're a wise man Trevor. I agree about the vitamin D (sun) in addition to the magnesium. As, in theory, SSI are improving the immune response, it makes sense to make sure that two of the most important nutrient components for a healthy immune system are in ample supply.
Hi Trevor! Hooray for no more pred!!!!
I've been reading up on the SSI trial and I am so excited about it! If I were flaring I'd try everything feasible to get into this trial --- here's hoping this is a long-term solution for you!!!
That cold thing, that sounds super promisingUpdate from me: I am starting week 14 today. I am feeling better than I was last time I updated. I have less urgency and my BM's are getting more formed. I am at 1-3 per day (usually at 1 in the morning) I have still been pretty tired but I have a horrible head cold so that prob has something to do with the fatigue. I also wanted to point out that I haven't had a cold like this since before my diagnosis. I think that is a good thing because whenever I got 'sick' before if just have horrible diarrhea and Crohn's symptoms. Maybe my bowel isn't my weakest spot anymore??
I usually have good days and bad. The bad aren't as bad anymore but I still have them. I just get so bloated and crampy and tired...if I could just stay on 'good days' I'd be great!
Are you responding well to Remicade?Thanks again Trevor I practically stalk this thread to see how you and the others are doing. I'm trying to get involved in the trial but I live in Ireland and will have to stop remicade for sixty days but hopefully I won't get the placebo if I do take part.
Good luck
Is the bloating a new symptom or something you've had for awhile? How about the tiredness? When was the last time you had your vitamin B12 level tested?I just get so bloated and crampy and tired...if I could just stay on 'good days' I'd be great!
No. It's not. I've had issues with that stuff since diagnosis. The tiredness has been getting worse and worse but isn't as bad since I started the SSI. My vit B12 was checked about a year ago and was normal. I actually had b12 njections that I was doing and had an allergic reaction from them so I had to stop but my levels were normal anyway.Is the bloating a new symptom or something you've had for awhile? How about the tiredness? When was the last time you had your vitamin B12 level tested?
This is why I am second guessing my self on starting the trial. Even if it does work, it's stopped working for most people eventually. Once that's over you're done, until it's available to everyone.You have nothing to apologize for, I appreciate you sharing!
Obviously I want this trial to be filled up. In your case though, I'm not 100% sure that it is the best choice at present. While I very much believe in this treatment:
1. It is experimental
2. When you're done with the trial, you're done. They don't send you home with more vials to cover you for the next 2 years.
The problem with stopping Remicade is that is when antibodies are often formed. When your body begins to make antibodies, the biologic starts to not work and/or you get some side effects. As such, my concern is that you stop Remicade, take the SSI and if at some point you flare again before SSI is available as a treatment, Remicade is no longer effective for you.
I'm not saying don't take part in the SSI trial, but this is definitely something to discuss with your doctor and family.
Are you on a biologic that is working well for you?This is why I am second guessing my self on starting the trial. Even if it does work, it's stopped working for most people eventually. Once that's over you're done, until it's available to everyone.
I wouldn't categorize it as "well". But it helps play a part in keeping me from getting incredibly sick. I don't think that should be anybody's goal though, when dealing with this illness.Are you on a biologic that is working well for you?
I just had the colonoscopy done today so I didn't get that information. He could only make it a few a couple inches before he had to stop. I guess it's bad enough that he set up an appointment with a colo-rectal surgeon, so, can't be good. He sent out biopsy results too. I suspect it's probably scarring, as I haven't had formed BM's in a very, very long time.You've already tried Cimzia and Humira?
Did they tell you if the rectal stricture is from active inflammation or scar tissue?
And if/when SSI gets approved as a treatment, as it is going through the proper clinical trial processes, insurance companies should pay for it.