SSI Vaccine Trial

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Just for ease of mobility and work. On the weekends I do eat earlier and I am hoping to start eating breakfast and lunch next week too.

Also going from 1 g a day of MM to .5 g a day this week.

Oh and I've been coming off 8 mg of Immodium daily too. Today only 4 mg, hopefully that continues.


Lots of moving parts :-/
 
Just two today and they were both within an hour of waking up. That's certainly progress. Second could have been more solid but I cracked and had a Gf beef last night so maybe not shocking :p

More relevant, IMHO, would be the new pain and cramping. Something new is hurting (comes and goes, belly button region, sharp and sudden, 2 or 3 out of 10) and while it's super subjective and I have no idea what it might be I feel like it's got to be a good sign. Doesn't feel like any other Crohn's pains I've had.

Should almost be at my max dose. Sometime this week. Thursday or Saturday.
 
Thanks again for updating Trevor :) I had my first dose yesterday. Not feeling well at all today. Kinda dizzy and lots of bloating and gas. My belly is making all kinds of noise. I have had extra BM's today, although not watery, pretty formed but painful. :( I'm pretty sure I got the med and not the placebo; these changes are very drastic way outside of my norm. I get my second dose tm, based on what they said today I will be increasing my dose by 0.01. I am holding out hope that the worsening symptoms are temporary and that I will feel better than ever soon!
 
Trevor said:
Just two today and they were both within an hour of waking up. That's certainly progress. Second could have been more solid but I cracked and had a Gf beef last night so maybe not shocking :p

More relevant, IMHO, would be the new pain and cramping. Something new is hurting (comes and goes, belly button region, sharp and sudden, 2 or 3 out of 10) and while it's super subjective and I have no idea what it might be I feel like it's got to be a good sign. Doesn't feel like any other Crohn's pains I've had.

Should almost be at my max dose. Sometime this week. Thursday or Saturday.
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I just wonder if it is the solid fecal matter moving across inflamed intestine (that is hopefully healing :) ) Total guess of course.
 
Wendsjoy said:
Thanks again for updating Trevor :) I had my first dose yesterday. Not feeling well at all today. Kinda dizzy and lots of bloating and gas. My belly is making all kinds of noise. I have had extra BM's today, although not watery, pretty formed but painful. :( I'm pretty sure I got the med and not the placebo; these changes are very drastic way outside of my norm. I get my second dose tm, based on what they said today I will be increasing my dose by 0.01. I am holding out hope that the worsening symptoms are temporary and that I will feel better than ever soon!
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Congratulations on your first dose!

We're all pulling for you. Please keep us updated!
 
Wendsjoy the first day or two were the worst, for sure! Hang in there :)

And I think that's (hopefully) a good bet, David. My GI said my colon looked pretty healthy on my last scope (February-ish) and was healing nicely so whatever was still inflamed was higher up, even back then.
 
That is similar to my experience, it seems like this treatment causes our digestion to improve first which causes some uncomfortable weeks of healing.

Some diet modifications would be ideal with this treatment during the beginning.

I took some dulcolax during the first few days that I started feeling constipated since I was worried about getting an obstruction.

With Remicade/prednisone it felt like the drugs healed my intestines, which got rid of the cramping and spasms, causing more solid BMs.

I'm on week 5 of treatment now, there's no more sharp pain when I poke around the terminal ileum, just a bit of discomfort from digestion as I've been eating a lot more variety again and making some mistakes. So happy to be back to my active lifestyle, biked 20km today :)
 
Uncomfortable would be exactly how I would describe it. For anyone who's had moderate to severe Crohn's this is a walk in the park, pain-wise.

But I'm glad that's what I should be experiencing :)

And take it for what it's worth, but my right ankle and left wrist have both been throbbing. Both of those joints have extensive scar tissue from repeated serious sprains and in the past have always given me trouble when my Crohn's is acting up. My ankle sometimes gets really hot and swells up to the size of a softball. So given what the vaccine is suppose to do and what my past experience has been with those joints and inflammation I'm intrigued.
 
Trevor and Wendsjoy, thank you so much for keeping us informed about how you are going on this trial. I think the SSI vaccine is one of the most promising genuine hopes for the treatment/cure of crohn's. You are really helping so many people by participating-thank you again!
 
No change in frequency but better form and less urgency. Ankle is a little swollen and wrist is killing me :-/

Today was a shot day. Next one is Saturday!
 
Injection #3 tomorrow. I am doing better. The side effects have died down and I am feeling more like myself now. I slept 12 hours last night and only had one BM today; usually when I have a bad day or two like yesterday and Tuesday (had 8-12 BMs) I'll have a good day, like today, so I don't know yet if it's medicine related or just cause I cleared myself out. Time will tell. ...this mornings BM was loose and gross but the urgency wasn't quite as bad and only one trip to the bathroom is great! Typically I go 3-4 times in the morning. I also feel pretty funny. I don't know how to describe it accurately...I don't feel bad, I just feel different. I don't have my usual right and left sided pain and I don't have reflux as much. I do have some joint pain that I typically will have during a flair but nothing too bad. So...anyway sorry for the gross details but I want to give as much detail as I have to help as many people as I can :) I'll keep updating as things progress. Still praying that this is the answer so many of us have been searching for. 🙏
 
Hahaha. Too funny. That's so similar to what has been happening for me, Wendsjoy.

David, the joint stuff is new this time but an old symptom that I primarily associate with a flare. I have extensive scar tissue from sprains in my right ankle, which is currently swollen, and my left wrist, which is throbbing like heck. My other ankle and wrist also have damage from sprains but much more minor and I don't really notice them at all, at the moment.

I'd have to read back in the thread (mm is not good for memory) but it was either yesterday or the day before that I noticed they were stiff and painful.
 
So. Just once today. First thing this morning.

Not getting too excited. It's just one day. But that's reasonably awesome.

Breakfast: 4 egg yolks, 4 sausages, sauerkraut, sprouts and black tea with milk and honey
Lunch: sweet potato crackers and aged cheddar, apple cider
Dinner: pork chop, salad, red wine, green beans, sweet potato

Today was an injection day. Next one is Monday!

Wrist and ankle are feeling better.
 
Great news Trevor! So, just one bowel movement for the day? Have you ever had just one bowel movement in a day since being diagnosed? I know I haven't!
 
Trevor, thank you very much for sharing. I wonder if every phase of the study progresses with very positive results; when will the drug approval happen?
 
Hey everyone, been a few days, thought I'd give an update. So today was injection day 4 for me. Yesterday was a rough day but I was traveling and ate a piece of pizza for dinner (never a good idea, but I was passing through Chicago and starving) so I'm thinking that it was not a good day from the stress and bad food. Today is better. My BM's have, like Trevor, been slowing gradually. I had 2 days in a row of only 1 BM in the morning and that's it! I do still have some pain in my right side but not as bad as before and some joint pain. The amount of blood that I typically see seems to be lessening as well. Hopefully these things will continue to improve. I will keep updating as things move along :)
 
That's awesome about the 1 BM Wendsjoy! Congratulations :)

Sorry you've had some rough days but I pray that each day is an improvement from here on out.
 
Pmitra, my Crohn's is throughout my small bowel mostly concentrated in the ileum. My worst symptom is pain. I have it in my sides, lower back, stomach, esophagus, tailbone, rectum and even my jaw. I also have joint pain when I am 'flaring' but that seems to be all the time now a days. My BM's range from 3-12 a day. Urgency is very bad in the mornings. I tend to wake up in the worst pain of the day and most of my BM's occur before early afternoon. They are bloody and mucousy almost always and very painful. I could write a book but I have tried everything to relieve the constant inflammation and pain including SCD diet and HBOT with acupuncture. The only thing that provides any relief is acupuncture. I have not tried any meds except LDN and entocort. Neither of which did much. I have such high hopes for this study. I will be devastated if it doesn't work.
I had a pretty rough day again today. I don't know why I've been up and down so much. I had some more pain and extra BM's. No blood, but very nasty. Not really formed at all. I was so excited to have some initial relief and improvements but after today I am scared that the med won't work at all. But maybe it's too early for such big improvements. My body is going to take a while to heal I guess. I read all the posts of those who were in the study and are better now...wondering how long it took to see drastic improvements or if they were more slow and gradual? It has only been a week and tomorrow is another injection day. I am praying so hard that I will improve!
Trevor, are you experiencing any ups and downs like this? How are you feeling lately?
 
Hang in there Wendsoy! No blood is a good sign! I am sure there are ups and downs in the healing process. What were the total # of bowel movements today?
 
Hang in there wendsjoy you're only a week into the trial, early days still, there are many variables to consider also, I.e is your diet fairly stable
Or have you been eating different things, also keep in mind that you could have got the placebo, but anyhow, stay strong! You're gonna get through this and have faith, I really think the SSI vaccine is gonna be the golden ticket. Hope you start feeling better real soon!
 
Up to, or very near my full-dose.

I went up to my the family ranch this weekend (4 hour drive) for the first time in 6 months so that's a good sign. Felt great the first day but was exhuasted by day two. Seem to be bouncing between 1 - 4 a day depending on conditions last week. Usually much less urgency.

Joints have cooled off. Less pain in general. Down to 5 mg Pred this week. Just for context I'd usually be back to loose stools and 5-10 bathroom trips (or worse) once I get below 10 or 15 mg of Pred.

6-ish more weeks :)
 
Other fun facts:

The scar tissue in my lip (sucker punched at a party when I was 19) and a funny little bump I've had on my side forever are both red and painful/swollen.

And my guts are more sore now than the sharp pain from last week. Feels like healing? Whatever that means.

Super subjective but that's as good as my science skills get :p
 
Super nauseous today. Was a little yesterday but today is much worse.

Threw up :p that always helps. Not sure if it's related or what, but the only time I've been nauseous with crohns really was when I was a) deathly ill or b) was recovering from being deathly ill.

Since everything else seems to be going decently I'm filing this under the recovering heading.

The trial nurse made sure I noted it in the journal but seemed to think it was normal and said not to worry unless I developed more severe symptoms or a fever over 100.

Hard to say how I'm feeling otherwise as the urge to chuck is pretty distracting.

Forward, march :)
 
Same here too...not much improvement yet. Still up and down and dealing with the same stuff. Holding out for some much anticipated improvement soon!! Today started week 3 and injection #8.
 
Not that I don't normally sound nuts but I'm really swinging for the fences this time. Some random observations...

I'm 'pinker', my skin tone has visually changed in the last week or two. Super subjective but I am a trained photographer for what that's worth. Colour and skin tone is kinda our thing...

My guts hurt different. I honestly don't know how else to say. I've never had a ton of persistent pain, really, but how things feel now reminds me very much if how I felt when I was first on Pred. Just the way my guts feel. Nothing else is similar.

My skin has been improving for months now. Ever since I really cleaned up my diet 100% and started taking magnesium but it's really REALLY improved the last few days.

Despite much better skin quality and texture and almost being off Pred and eating well I seem to be getting pimples on my face. I do tend to get that with Pred at doses above 30 or 40 mg but I've been at or below 10 mg for pretty well a month now and below 20 for several.

Could be totally unrelated. But wanted to mention it all for posterities sake.

Or posteriors sake. Something like that.
 
Hang in there guys, just wanted to chime in on the pred thing, acne generally always pops up for a bit when you taper off it. Anyway, just wishing you guys well!
 
I can agree with Trevor. I feel the same way. It's hard to explain but I feel different. My symptoms have changed. My guts hurt in different places than before and sometime I have worse diarrhea. It's so strange. I don't know how else to describe it.
On the skin note...mine has been awful. Kinda like when I'm in a bad flare. I have pimples on my face and bumps on my arms, which generally pop out when I am really bad. I have also noticed that I have some anxiety feelings happening. But even that is strange. Usually when I am in a flare I will have terrible sleep quality and awful anxiety. Right now I have mild anxiety but I'm sleeping better than before. Again, it's so strange.
Anyway...I hope these weird updates actually help people in some way. I just feel like I'm rambling.
 
I appreciate these stories! So much so that I've started the process of getting approved for the trial. Friday, I'm getting all of my paperwork together, so I should be talking to the study nurse early next week to start the informed consent and official screening labs. Fingers crossed they let me in.
 
Mondo! Yay! My gf's college roommate is waiting to hear back from Qu right now. Hopefully he gets in too!

The faster we fill this one up the faster they get to the next stage! And hopefully onto prescription pads shortly thereafter if it proves as effective as we hope :-D
 
Nope! Or mucus or anything else. I've got to say, it's maybe not the miraculous instant recovery I'd like but so far, especially if things keep trending upwards, so good.

I'm still only really eating in the afternoon/evening but I'm getting plenty of calories.
 
Agreed Trevor! I have a friend applying for the study too…hopefully they'll close it soon with the 60 participants and be able to get it out to the public as an approved drug for IBD.

I wanted to chime in with an update…i still feel pretty crappy. I am in week 3 with injection #9 today. Keeping the faith that it will work eventually. I have a lot of nausea this week, my appetite is totally lacking. I don't eat much in the morning either (that's my worst time) but the last few days I haven't really wanted to eat anything at all. I also have pain and bleeding now as my fissure has opened back up and the extra bowel movements make that agony. :( this feels like a bad flare with everything that i am feeling, my dr wants to start pred, but I am holding out as long as i can for the ssi to work!

on a positive note, I had a cold coming on early this week. I woke up with a horribly sore throat and cough and runny nose on sunday. Typically I will be sick with something like that for a while so I was bracing my self for worse crohn's symptoms and a bad cold…but i am completely better ALREADY! I can only attribute it to the SSI because that is the only thing that is new. Maybe it's starting to work and all the other symptoms will follow along?? one can only pray!
 
Freudian slip? I accidentally threw away my Imodium when I was cleaning up my bathroom the other day. Went from 2x 2 mg tabs a day to zero and if anything I think I feel better.

So where I'm at:

3 x Mezavant
5 mg Pred

Various nutrient/herbal supplements
Various pre & pro biotics
1/2 to 1 g MM high-CBD

Chris Kresser Paleo/Paleo AI (custom-Paleo-based-elimination-diet is too wordy)

and of course the SSI.
 
This week has been steady, twice a day in the morning and then today just once so far :p

More importantly, last night I could feel things moving sllllowly through the system (no gurgling, the very first thing I noticed before I was diagnosed) and it HURT, like owe. I don't know if it was in this thread or the other but one of the compassionate care folks who was right around week 3/4 described exactly the same thing.

:-D
 
I'm halfway through week 7. Pain at the terminal ileum (where most of my inflammation happened) is gone. A week or two ago I started getting really solid BMs, too solid, I was massively bloated in the evening and in a lot of discomfort, spent a few days taking dulcolax and limiting fiber in my diet and the bloating is gone. I was worried that I may have developed a blockage or stricturing (doc said my terminal ileum looks ugly during the last scope about a year ago), but it seems to be getting better now.

I agree with Wendsjoy that it feels like the pain has moved elsewhere, I think the new soreness for me was mainly from that week of bloating I had, my digestive system may not be used to such solid BMs and I'm sure there's some stricturing.

I've been reading about cases where people have 'beat' their strictures with careful diet and their strictures eventually loosened up, trying to avoid surgery as long as I can!
 
Week 4 is in the books.

Twice this morning. Same old - same old. Ha.

I did have some pretty severe cramping this weekend. Really sharp, sudden pain. Bloating. Soreness.

But still improving overall :)
 
Nope! 4 weeks of the real stuff for sure :)

The second phase is open-label. No chance of a Placebo.
 
pmitra0123 said:
Thanks Bees for sharing info with us! So, how many bowel movements a day before the trial and how many now? Blood? Mucus? Urgency?
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My BMs are more solid and less frequent, but that has never as big of an issue with my Crohns as the pain and fatigue I experienced from inflammation. It's been a great month thanks to this treatment, I hope the results persist!
 
Today is great! Bit of a blip last week, few off days, not totally certain why but I did start a new vial of the vaccine, that's the only thing I can figure.

I'm still kinda in cautious-optimism mode but fingers crossed.
 
Tyler Wilson said:
Hey Everyone,
I also took the SSI treatment. I have been Crohn's free now for 3 years. I battled Crohn's for 5 years before starting the SSI treatment. I would strongly encourage anyone struggling with this disease to look into trial. Pass the word.

Trevor,
Hope it work as well for you as it did for me. Any questions don't hesitate to ask.


Tyler
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I have Perianal Crohns with abscesses,fistulas & now setons. I was wondering if any SSI participants have had perianal fistulas & if so has there been any success with closing the fistulas?
 
Jay,
Yes there has been one patient that I know of that had fistulas as a result of her Crohn's disease. She is currently free from Crohn's and the fistulas have gone completely.
 
I've maxed out around .14 and seem to be holding steady with that.

Blip meaning I didn't feel as well. It's hard to quantify, unfortunately.

I actually ate breakfast and went to work IN THE SAME DAY today. That's a minor miracle right there.
 
Hey All! Sorry it's been so long since I have updated...
I have been doing better :) finally! It hasn't been as up and down lately. I have been feeling pretty much the same everyday. I have had several days in a row of only one BM and feeling pretty good. My fissure is actually healing, already! Usually that takes forever! I am still cautiously optimistic, but this is the most improvement I have seen. Ever. I even ate a fast food burger, just to see if it's a fluke that i have been doing so well, and I was totally fine the next day! I would usually be very sick, but I wasn't.
I am still feeling some pain and bloating and sometimes I do have worse diarrhea. My BM's are still not 'normal', but things are looking up!
Now on to week 5!
 
I'm back in Vancouver for my 2nd visit, have been deemed a 'responder' to the drug and will be taking it for another 2 months.

Still feeling great!
 
Hi All- So excited for you, this sounds like a great drug.

It seems that Qu is pushing for a Compassionate Use indication from the FDA. If they get this, they can fast track the drug through FDA approval.

http://www.reuters.com/article/2014/04/28/idUSnMKWgGjK4a+1d4+MKW20140428

I don't have any inside information, just what I gleaned from the internet. But as it can take years to get drugs approved by the FDA, getting the Compassionate use indication would be a great thing. All the work Trevor, Wednesjoy, Bees, Tzvia and other are doing to participate in this study will really help this cause. I hope this pans out to be great and that all of you can have access if you want it.
 
Barekat, where did you read that Qu is pushing for compassionate use for the FDA to get fast tracked? I read the article you linked, but didn't see that there.

Thanks!
 
Hi David, didn't read it. But given the name of their program and presentation poster it all fits. I work for a Pharma company and this is just the kind of thing that help fast track FDA approval. Here is information on Compassionate Use:
http://www.fda.gov/ForConsumers/ByA...es/AccesstoInvestigationalDrugs/ucm176098.htm

Maybe it's just wishful thinking on my part. But I'm just really hopeful that this drug doesn't languish in the really tough and sometimes illogical FDA approval process.
 
Ah, I see.

We're a ways off from that, but hopefully all goes so well that we can indeed get SSI fast tracked :) If the results from this trial and the phase III trial are good, god knows I'll be doing everything I can to help it get fast tracked :)
 
Those of you on SSI, have you noticed any beneficial side effects on other problems like acne, food intolerances, seasonal allergies, etc?
 
I haven't gotten any allergies/hay fever this year yet. Usually around this time I'd be a mess for a few weeks. Or since my late teens thats the case. I don't remember having allergies as a kid.

Acne no, but I've been on and now almost off Pred so may have been hard to tell.

And food intolerances, maybe. My food and digestion issues have improved greatly from January to now but they were improving when I wasn't on the SSI as well.
 
Today, pretty awful, haha. It seems like once a week-ish I have a much worse day or two.

Still improving overall though. More energy, more appetite, less urgency and thus less anxiety.

I dunno, I'm almost at the end now. Hopefully the nurse was right about the 'keep getting better even after you're done the injections' thing.
 
Oh no Trevor! Why awful? What happened? How many more weeks to go? I was hoping you would be in remission at this point - maybe you are.

TYLER, and some of the other experienced members - did you all get this type of once a week negative days like Trevor is getting in the early going? The macrophages should be recruited to the area and shutting down the inflammatory response, shouldn't they? Maybe this is some sort of non-related irritable bowel like symptom that Trevor is experiencing? Trevor - do you notice any foods/habits that make you feel this once a week negative day?
 
Don't panic yet, pmitra0123 ;) firstly, while I think all 10 CC patients reported improvements I believe 7 made it into remission and 5 sustained remission? Someone correct me if I am wrong but I don't think it was 100% sustained remission and it was a very small group. I am not saying I'm not one of those sustained remission people, but everything in perspective.

I've been shying away from being too specific about things because I a) don't want to get anyone too excited and b) how I feel is very hard to describe and if I just reported the physical symptoms day by day I think things would seem worse than they are or like I am not really improving, which I absolutely am.

One of the very first things when I first got sick that I noticed were skin tags, that's how I knew I likely had Crohn's and not UC. The last couple of weeks they seem to be greatly reduced and/or going away entirely. This, to me, is a much more promising sign than how I might feel on any one day. And even the 'bad' days are still 1000x better than any day in December.

The how I feel thing is trickier. I feel 'different' and I have no idea how to describe it other than when I was on Pred the first time, when I was getting better this is how my guts felt. I really don't know how to describe it, unfortunately, other than it's just not the same as before, haha.

So I'm pretty optimistic :) As long as something is going on I am happy and something is for sure still going on. I've kinda decided to give it until September and then decide where I am, and if I seem to be staying there without steroids.

That's maybe the biggest thing to stress. If the SSI has gotten me to a place where I don't have to take anything stronger than Mezavant and MM and I continue to slowly get better, or even just not get worse, that's a huge win in my books and a much, much better place than where I was.
 
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Trevor, what is your diet like? I know you mentioned you were doing some sort of paleo. But what exactly are you eating?
 
What I'd call Chris Kresser Paleo for the most part.

Orthodox Paleo with various, high-fat, grass-fed dairy products and I will eat some rice or oats from time to time.

Mainly grass-fed meats and organic fruits and vegetables :) lots of fermented foods.

No blood no mucus and the last few days have been pretty stellar! This is the most 'normal' I've felt in two years.
 
I am the same. Still doing better but not where I want to be. I am in week 7 now. BM's are still at 1-2 day with little mucous and no blood. I am still up and down although not as much, some days I feel great and almost like I'm not even sick. Other days I feel awful (bloated, tired, anxious, pain and pressure...etc), it's like the disease has a hold on my body and is fighting to keep it in it's grips. I sometimes imagine a horrible invisible demon with its claws in my intestines and my body is trying to fight it off. Some days it wins others it doesn't. It's so strange.
Overall though, I do feel better. My energy level is better. My sleep is better. The BM's that I have are more formed and less painful. I am still very hopeful that at the end of this I will be in remission.
I head back to vancouver in a week and a half. I'm hoping they will share my lab results with me and they will show improvement. I can 'feel' better everyday, but until my lab results show improvement I won't believe the med works. I feel like I need those improvements in my lab work to prove I am really healing.
Sorry if this post is weird or rambly. I am not sure how else to describe things. Haha
 
You'll get there! How many weeks have you been on it now? And did you have blood etc before? Remember it takes a while to heal up. Hope you get to where you want to be!
 
Hang in there Wensdjoy! You def have a right to your labs - just ask them and I am sure they will give you a photocopy of them. One question for you - before you did this trial medicine, did you have ups and downs with good days like these where you didn't feel sick? Or is this something new that you started feeling after you entered the trial?
 
Joshuaaa said:
You'll get there! How many weeks have you been on it now? And did you have blood etc before? Remember it takes a while to heal up. Hope you get to where you want to be!
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I am on day 3 of week 7. I did have blood and mucous before so that is an improvement.
 
pmitra0123 said:
Hang in there Wensdjoy! You def have a right to your labs - just ask them and I am sure they will give you a photocopy of them. One question for you - before you did this trial medicine, did you have ups and downs with good days like these where you didn't feel sick? Or is this something new that you started feeling after you entered the trial?
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I am sure they will! I will definitely ask for the labs. I did have ups and downs before the trial, however my 'ups' weren't as long or as good as now.
 
Adrie said:
Hi guys,

My name is Adrienne. I was diagnosed with UC 10 years ago. 2 years ago flew down to Bahamas to receive this treatment (as the trial was not yet available in Canada) and was on the treatment for approx. 1 year. I was in full remission after 2 months of starting the injections, and have remained so since stopping (1 year).

I had no side effects, other than the redness at the injection site.

In addition to being in remission, it has also helped my immune system in general. I used to get every common cold, and after the treatment, I found I rarely get sick.

Let me know if you have any questions about it. I was done with suffering, so I gave this treatment a chance, and I am so glad I did.
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Hey Adrienne, was arthritis a problem for you with UC? If so, did the treatment help you?
 
Wendsjoy said:
Pmitra, my Crohn's is throughout my small bowel mostly concentrated in the ileum. My worst symptom is pain. I have it in my sides, lower back, stomach, esophagus, tailbone, rectum and even my jaw. I also have joint pain when I am 'flaring' but that seems to be all the time now a days. My BM's range from 3-12 a day. Urgency is very bad in the mornings. I tend to wake up in the worst pain of the day and most of my BM's occur before early afternoon. They are bloody and mucousy almost always and very painful. I could write a book but I have tried everything to relieve the constant inflammation and pain including SCD diet and HBOT with acupuncture. The only thing that provides any relief is acupuncture. I have not tried any meds except LDN and entocort. Neither of which did much. I have such high hopes for this study. I will be devastated if it doesn't work.
I had a pretty rough day again today. I don't know why I've been up and down so much. I had some more pain and extra BM's. No blood, but very nasty. Not really formed at all. I was so excited to have some initial relief and improvements but after today I am scared that the med won't work at all. But maybe it's too early for such big improvements. My body is going to take a while to heal I guess. I read all the posts of those who were in the study and are better now...wondering how long it took to see drastic improvements or if they were more slow and gradual? It has only been a week and tomorrow is another injection day. I am praying so hard that I will improve!
Trevor, are you experiencing any ups and downs like this? How are you feeling lately?
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Hey Wends! How are you? Are you experiencing any positive results with your body pains?
 
Jajabinks, yes I have had improvement in my joint pains. I hardly have any anymore :) now if everything else would follow along!!
 
Wends that's great! Crohns minus the body pain? I think you are getting somewhere! One less discomfort for now. I hope things keep going well for you!
 
Hello everyone!

I will make my space here, since I´ll be participating in the trial on Monday. I am flying over from Sweden tomorrow to Vancouver. There will be updates everyday, like Trevor and they others have done.

God speed!
 
Hi Sir Clausin

I'm just wondering are you an American or Canadian citizen as I live in Ireland and emailed Qu biologics but they said they can't take international patients at the moment. Congratulations anyway hopefully you have great luck with this treatment.
 
Nosebag: I am a Swedish Citizen and I had my first injection today. I Believe that Qu only have me and a friend of mine from Europe. I can´t speak for Qu, but I am sure you will get a chance now or later on.
 
Hi Sir Clausin

Hopefully I will get into the trial soon. How long do you have to stay in Vancouver? Can you go home to Sweden and self inject?

Thanks for your reply
 
Sorry for being flaky! I'm still here. Wedding season kicked into high gear and there's a school strike so work went nuts.

Doing well! Had my last appointment on Monday and I think I have to do labs for another two months but that's it.

Seem to be having more and longer good stretches and fewer bad days. Urgency isn't coming back and is lessening still. BM's are 2-4 a day still and probably less if I wasn't neurotic about it.

Skin just keeps getting better. I've gotta think that it is related. Still some odd/different pains sometimes, but I've decided that it's healing pain.

Still not 'normal' but getting there.


Still on:

3 caps Mezavant + 1.5 mg pred + .5 g MM (roughly a joint)

and lots of random herbal stuff and probiotics


Was on:

3 caps Mezavant + 15 mg pred + 2 g MM (roughly four joints)

and even more herbal stuff and probiotics
 
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.
 

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