I gained a few pounds once I was on Remicade, but I don't "blame the medicine" exactly. I attribute it to the fact that I had constant diarrhea before starting Remicade, and once I was healthier and...
I've absolutely have people say things like "I need to get Crohns for a month so I can look like you," and yes, it's ignorant, but at the same time, I understand that many people in their 30s (most...
I think a sore throat on its own isn't usually an issue. If you have a fever, they want you to wait until it's gone to get an infusion. And if you suspect you have strep throat, then you'd want to...
Yes, my Remicade levels were good at 6 or 7 weeks (right before next infusion), and I had developed no antibodies. I did this test about a year ago and my symptoms have remainded constant (meaning,...
I've been on Remicade for 2 years now with success. I have been feeling better, with the exception of still being very low-energy. But I try to stay realistic and assume that since I have Crohn's...
Even if you have UC, the mesalamine meds are fairly hit-or-miss as far as how effective they are. If you've been bleeding for months, you need help. And probably more help than Lialda is going to be...
Itchy spots like hives? I have gotten those in the past (allergy doc never managed to figure out my trigger). I keep them at bay by just taking one Zyrtec a day. Sometimes I can stretch one dose out...
It sounds like cysts, not acne. I had cysts that would swell I the size of a marble, one near my re that I had actually scheduled surgery to have it removed. And then I got lucky. I started doing...
I had problems with one of my knees for a year during & after a flare. Suddenly my 38-year-old knee, which had never given me a day of trouble, was so weak that I could not push myself upright from a...
Some suggestions for the things you posted about: Trying to put on weight: It's ok to have a fast metabolism. You're 20, so it's not unusual to still have a revved up metabolism and just be naturally...
That's interesting. So your infusion center allows you to bring your own medication to them to be infused? Is it run by a hospital? I'm guessing you still have to pay charges for the nurse and for...
It could be Crohns, Celiac (although the fact that you don't have same-day symptoms when you eat gluten makes me think it's not this), or something else. Overwhelming fatigue happens with a lot of...
I would take your doctor's advice. The two drugs (Lialda & Remicade) work in two completely different ways. The Lialda suppresses the release of chemicals that are responsible for inflammation, such...
Hi Emily- I totally get where you are. I struggled with varying degrees of bowel problems since about the age of 14. By college they were starting to occasionally have a significant impact on my...
Hi - I posted this in the Crohn's forum, too. I hope it's ok to share this info on both boards since both Crohns & UC patients have do deal with infused meds. About a year ago, the hospital system my...
As I was reading the first part of your post, something my own doctor said to me flashed through my mind. And then I read the last part, where you wrote about your doctor saying the exact same thing....
About a year ago, the hospital system my GI doc is affiliated with decided to take infusion appointments out of their doctors offices and transfer them all to a central clinic. The clinic was not at...
Sorry I'm seeing this so late, but I agree with those who posted above. I would never, never take antibiotics unless I knew exactly what they were supposed to treat, and a test had confirmed that I...
Have you read anything about the MTHFR gene? The fact that you have been recently using methotrexate and are having this pain (and obviously have IBD) makes me wonder what sort of MTHFR mutation you...
I recently read that people who take a Vit D3 supplement are something like 50% less likely to catch routine illnesses (colds, flu) than people who don't I can't remember the dosage they tested in...
I had a terrible reaction a couple years ago. Pain so intense at the injection site that I did not fall asleep at all the night of the shot, and the next morning I couldn't change out of my nightgown...
I would say that having a diagnosis of depression is way less important than figuring out what you need to do to feel better. That may include trying an antidepressant (I have heard that Wellbutrin...
You say that you normally get colds at this time of year....do you think there's a possibility that you might have a seasonal allergy? In the area I live (Central IL, USA) harvest just started about...
Thanks everybody! I did end up going to a walk-in clinic today because my head / face was in so much pain last night that I only slept for 3 hours or so. My hope was to get some Tramadol to close the...
Uceris is a steroid brand-name (in the US, anyway) that is a little easier on you because it works only in the colon, instead of affecting your entire body. So when you're done with the (I believe...
I've found a way that helps with the nasty taste - it doesn't completely disappear, but it helps. :) I pour an 8-oz glass at a time and try to gulp it in 4 big gulps in quick succession, while...
HI MacTaffy! Welcome to the forum. It's a great place to hear from regular people who are living with the same types of challenges you are facing! To answer your questions: 1. Crohns is reasonable....
I've been getting Remicade treatments for the last 10 months. It pulled me out of a really serious flare last winter (that Prednisone & Uceris didn't really help me with), and has done a good job...
There is a blood test called "Anser IFX" through Promethus Labs (I think they're located in CA) that can measure whether you have any antibodies to the Remicade, and the level of the medication in...
Would you consider traveling? A week at the Mayo Clinic in MN or the Cleveland Clinic in OH would most likely get you a definitive diagnosis and a plan for treatment that you could continue with your...
I'm so glad you found a doctor that took your concerns seriously and was knowledgable enough to validate your concerns. Like you, my most bothersome Crohn's symptoms are outside my gut. Extremely dry...
I had a similar experience many years ago as a college student. I was about 90 minutes from home and as my symptoms worsened and doctors continued to tell me that nothing was wrong (though they...
I don't think this sounds like something you should attempt at home. You've got to get this situation evaluated by a doctor. If you currently have a fissure (not sure from your post if the fissue is...
Don't be afraid of the biologics. Yes, they come with risks, but leaving this disease un- or under-treated is riskier. On a personal note, a friend of my family was diagnosed at 17 with Crohn's. He...
When you said your bloodwork is "all good", what does that mean? Is your C Reactive Protien and ESR (tests for inflammation markers) both very low? If so, you shouldn't need to do another colonoscopy...
My GI doc told me that current thinking on IBD is to treat aggressively. I messed around with 5ASA meds (Asacol) for about a year until I realized I was allergic (hives, constant swelling, but the...
Hey there- Looking for any advice on how to deal with symptoms that come and go - usually when I'm flaring, so I realize the "real" solution is to get the disease under control, but in the meantime,...
"I have thus been advised by my GP to seek out comprehensive treatment where a team of doctors work together for diagnosis and treatment protocol. Since I have so many chronic illnesses, this makes...
I've been struggling with this over the past year (longer than that, probably, but who knows that they're starting to feel fatigued when they have a chronic illness, right?) I have done a few things...
I had a wonderful experience at the Mayo clinic in Rochester. Dr. Kenneth Schroeder was my "main" doctor, and he arranged appointments with an eye doctor, a nutritionist and a dermatologist after we...
Have you considered moving to a different type of medication? I used Asacol for about 18 months, and while it did help, I really never got to the point where I felt like I could count on most days...
I was very concerned about permanently suppressing my immune system when I went on Remicade. I have two kids and I work with kids in my job, so I was worried I'd constantly be catching every cold &...
I am allergic to Asacol, which is another melamine drug. (Lialda as well. I think all these 5-ASAs are basically the same thing.) Mine started as itchy skin, started on my scalp & neck, then...
Stress can absolutely cause a flare. A little over a year ago, I had a week of bad things happens. My basement flooded, my best friend's dad died, another close friend's dog died (one of those pets...
It sounds to me like you're starting to flare before your next dose, too. There is a blood test that can be done (in the US anyway) that can tell you if there is enough medicine in your system toward...
I notice that my period is almost always a reflection of how well my UC is being managed. When the UC is at its worst, my cycle is very short (21-22 days), periods are heavy and long (6-7 days) and I...
I'm another person that does infusions, but not injections. My nurse starts an IV with a saline drip, then slowly pushes a syringe of iron into the IV so it enters me along with the saline. It takes...
You wouldn't believe how exactly you sound like me a year ago. I was off all meds for about 6 months because the Asacol that was keeping my UC in check was also causing hives and swollen lips, arms,...