Thanks all! I woke and it wasn't completely clear, so ... gulp gulp. Ugh. Just gets old. Sorry to whine! ZiggyZagnut - I won't let them use anything but propofol! I know it's got a scary side, but i...
Hi all... Been a long time. I've got my annual scope tomorrow. I hardly ate for days ahead and been super hydrated. Within one night of prep everything is clear/urine-like. No anything. not even the...
Me! I started it (off-label approved by insurance) after failing (literally) every drug marketed for Crohn's (except methylprednisolone). Within a couple of months my inflammation (CRP and ESR)...
No I don't believe he personally wrote. He has a medical publication that was released in May 2011 which is what my GI referred the insurance company to in order for them to approve it. We all...
I have been approved for Stelara, off-label. It's been a miracle for me. After 6 years of nothing working, I am finally in remission. My doc submitted all my failed med history (listing each med,...
Hi all, I'm bouncing over from the Crohn's side of HW to ask a question about Stelara. I am a Crohn's patient who has failed all approved Crohnie meds. I got Stelara approved off-label based on the...
Wow! You guys are awesome. Busy week at work and I haven't been online, come back to find all this support and wisdom. She and I did have a *long* talk about what a druggie is and how it is different...
Thank you all so much. She's still copping an attitude, but I've told her it's not acceptable and until she speaks with respect her rules are strict and if she is rude again, privileges taken away...
Thanks guys. I just need to stop crying. (emotional person here... worse after all these years of flaring). I can't do any more than I do. And, to be so mean cuts me to the core. I'm just parent...
I'm really sad and thought I'd just post because... who else would understand how this feels. I am a single mom (only parent as her dad is not involved) with a 14 year old girl. We just got into an...
I haven't been posting for a while, but I still read the board from time to time. Work has been so busy and I am finding it hard to keep up. I felt like I wanted to let all of you know that I got...
Last I heard Prochymal had re-entered Phase 3 trials with approximately 2/3 data having been collected. That was about a year ago, so I'd imagine it is closer now. The company, Osiris, applied in...
It's possible the pharmacist might have some information for you too. Agreed that always better to error on the safe side! good luck with it!...
Just checked in and saw the news... Hang in there Nanners! Sending hugs and good wishes....
I've been a carrier of cold sores since probably about '95 when I married my ex. I knew full well what I was doing when I kissed him despite the sore. However, I never, ever had a sore myself until I...
I have vomited like that several times. Sometimes I think that, when I get really hungry, I am more prone to vomiting in the morning with a spasmy type of bm. For a while, if I didn't have a piece of...
Did you doc mention taking folic acid while on the mtx? I was on 25 mg sub-q each week for about 6 months. I quit because it didn't seem to help. But, while I was on it, I didn't have any notable...
I'm at 10 years since Dx and I get scopes about once a year. I feel better getting them more frequently because I've had some scary looking (potentially cancerous looking) growths, etc. Better safe...
Hi Alliex3... I've never had an NG tube, so I can't offer advice on that. But, I wanted to send a hug your way. This disease is so so so hard... I can't imagine being as young as you and dealing with...
I'd love to hear updates on your experience with the LIFT procedure... I've not posted much lately but still read from time to time. I'd missed your first posts, but caught this one. I am going to...
I'm in the same spot that you are... I've failed every other drug on the market. And... I just attempted to enroll in a GSK clinical trial for a new oral medication. It's a new mechanism and showed...
Thanks guys! I must be saying it wrong. I need to get the lab results sent to me. The trial coordinator even admitted this is well above her understanding and education level. She told me that the...
So, I'm usually over on the Crohn's side of the forum. I've been struggling with that for 10 years. I was just trying to enroll in a clinical trial but even though I met every single Crohn's...
I was talking to an ex-boyfriend (9 years ago we lived together for 2 years, pre-Crohn's). I was discussing that he doesn't need to worry about me with the pain meds for pain *management*... He...
I'm in your shoes except that I did try and fail Cimzia also. I was on Tysabri for 6 months, but discontinued because I could not entirely get off steroids and so the benefit did not seem to...
Thanks CrohnieToo... Yes, it's the trial I am nervous about... The only reason to be nervous of the test is that its results will be part of what make or break my enrollment. All of the other tests I...
So I need to take this test as part of the entry requirements for the GSK trial drug. I've never had the test before and am looking for input. My last ESR was 74, my last CRP was 4.9 (49) so I can...
I had my child before Cimzia days, but just to let you know, I have no side effects from the Cimzia at all. I get a white spot where the fluid goes in, which is normal (not even a reaction) as the...
I get very red, angry skin down in the area of my fistula ... well, in a lot of "that" area down there. It's good that you called your doctor, as that will be your true answer. If there is no...
I have a fistula, so it's a little hard to tell where things are coming from, but I highly suspect it is not just the fistula leaking. I really think the tags and tears in that area contribute to...
So sorry about the miscarriage. That's hard and I'm sure contributes to your stress. I just wanted to chime in about the bleeding. I'm a regular bleeder myself. When I first started bleeding, I was...
Hi all... It's been a while, as I've been super busy at work. But, I'm wondering what your opinions are on this... This morning I woke with my left ankle painful, walking with a limp. I did nothing...
I read the same thing today. Having also failed all currently available medications, I am pretty eager to learn where this is at in the approval process. I called the company's information line today...
I've been told that sometimes scar tissue can cause active CD symptoms with regard to number of trip to bathroom and the urgency... That may not be the case, just something my doctor told me can...
Hang in there! Just remember you're just wanting to rule out the scary stuff, not expecting it to be there. It's hard for you because it's *you* who sees the blood afterward and feels the pain. And,...
JLCat... If bleeding is new for you, it's always good to call your doctor. But... Just to help you feel better, I bleed all of the time. Typically not much, but I've definitely had plenty of "bigger...
It's so great to get input on this! Since the vertigo was a little better late afternoon than it was when I woke, I decided to see how I am today. And, I also took an Allegra last night... I do get...
Thanks guys. I wondered if it could be a symptom of the cold. One of the first symptoms of this cold was plugged ears. The doc had me use a steroid nasal spray to reduce swelling in the eustachion...
Just wondering if this has happened to anyone else. Maybe OT, not sure why it's happened/happening. It's eased up over the hour I've been awake, but I could not walk - I was bumping into walls and...
I would say you should tell your doctor. My dad had a retinal hemorrhage while on a blood thinner... You'd probably know if it were something that risky, but better to be safe than sorry, especially...
Thankfully I respond well to Norco (hydrocodone)... It helps with my rectal pain. Doesn't completely take it away, but dulls it. However, Fentanyl does not work for me. I've tried the patch in hopes...
Glad I logged in tonight to check the board! The thing that's bothered me about the way they are conducting the open label is... If you did get the placebo on the in 603, then you move to the open...
I had to quit 6MP (and AZA) for nausea reasons. I understand that, for most people, the nausea wears off after you've been on it for a while. So, give it some time. If taking it at night with food...
First I want to say thanks for sharing your experience with us - I'd love to hear how they work for you. My docs have been wanting my colon out for years and, like you, I want it in. Sometimes I feel...
Lots of advice on here... One thing that's helped me a lot - I believe kept me stable and out of the hospital - is a compounded budesonide suppository. It's not a typical medication and must be...
I don't really see a difference in my crohn's when I have wine (any drink) or don't have it. However, I'd go with nightside's guess too. Alcohol actually can thin the blood, so nightside's idea would...
I am always dragging - feeling like I have a lead blanket draped over me. My B12 is fine according to lab tests, slightly anemic, but just barely and I'm in the middle of a series of 5 iron...
Many people say that the nausea goes away after you've been on the med for a while. I found I needed an anti-nausea medication a half hour before my 6MP. I tried phenergan, but still had nausea so I...
Mine will do a scope every couple of years to check for cancer signs. I believe that's recommended after having the disease ~8+ years....