Faithmac, Thanks for all your posts on this. iPoop just clued me in on them. I just found out I'm in the same boat as you, so to speak. I was on Remicade for a long time, then had to go on Humira....
Thanks, I'll take a look at those. Went to the Infectious Disease doctor this morning and she's going to proceed with the treatment. Had two options, one was a 4 month round of antibiotics that would...
Thanks Lamb, Humira seemed to stop with a bang. So looking forward to the Entyvio working. 4 months of this will be a real drag. Just have to make sure the GI doesn't want to put me on prednisone for...
Fiber is a big issue for me. GI says it's the strictures in my gut. The fiber doesn't pass through them well, so it usually results in a lot of pain and blockage type symptoms. Sometimes I can get...
Looking for someone else that may have gone though this… I was on Remicade from 2001 - 2010 -Came down with Guillian-Barré Syndrome in 2010 GI switched me to Humira as a precaution Recently the...
When they do the trails of these medications, any and all issues reported by patients have to be reported. Doesn't matter if it was 100% related or not, they have to list it. Could be a one in a...
I was on it for 8 years and it worked great for me. Everyone else covered the basics above, but I'll add that the infusion process can take a few hours. Other than getting the IV placed, it's pretty...
This may not be much help, but I'm 6' 4". I was diagnosed in my early 20's, but I had symptoms going back well into my teens. Not sure I "technically" had Crohn's in my younger years. Nutrition might...
Well, a couple of things: Remicade is often started with "loading doses". This is where they will give you a couple of infusions over a short period of time to build up the amount of Remicade in your...
I don't know, but I'm sorry to hear you are going through this. I just came off a wicked flare and the GI tried Flagyl and Cipro. Both gave me horrible back aches, joint pain, etc. He finally tried...
Honestly, I'd be more concerned about the steroids. I've been on Remicade or Humira for a total of 12 years now. They gave me my life back. Prednisone really helps when things are bad, but I'm still...
I got off Remicade because I developed Guillian-Barre Syndrome. Thought it wasn't caused by the Remicade, they were being cautious. I was off the biologics for almost a year, and when I started to...
A couple of things sound familiar. But first, I can tell you that the Emergency Room isn't a good place to try and get a diagnosis. Read the posts on here and you'll see what I mean. Most ER doctors...
I was on Remicade for over 8 years, until 2010. From 2010 to now I've been on Humira....
I think that unless they are really abusing your liver with the stuff, like as in really high numbers, it's likely OK. If they took you off it, I'd bet they'd return to normal pretty quick. I'm on...
Topical antibiotics is what they put me on. I was getting them on my face and arms. I went to a dermatologist for my annual skin cancer check and she prescribed it. Mupirocin was the name, I think....
Was looking at the wad of paper that comes stuffed in with the Humira syringes. Looks like it can affect the liver....
Have you been on Cipro before? I used to do just fine on all antibiotics, but about 2 months ago I went into a flare. GI went through Levaquin and Cipro, both gave me really bad gut pain as well as...
I'd let the doctor decide. If the original CT scan showed an issue, that should be all they need. Unless it's getting worse, of course. Sometimes it's hard having to push all the time on the doctors....
I don't know. They have always been more concerned about the issues with my 6MP than the Humira, so I haven't researched it much. I get my blood draw done every 2 months or so, and many of my blood...
Could be Humira. Are you on anything else? I'm on 6MP as well as Humira, and the 6MP is known to cause liver issues in high dosages....
Sounds like from the urinalysis they were suspecting a kidney stone or other related kidney issue. That's usually pain on one side, not on the center of the spine. I used to crank out kidney stones...
I took it for a few years, and it worked well, but started to lose effectiveness after a while, or so it seemed. A couple of things I remember about it: If I missed a dose in the morning, by mid...
C-Reactive Protein test is a pretty good indicator of inflammation. Not sure if that was the test you had or not. I'm just coming off a pretty bad flare, and my C-Reactive Protein was a really...
I'm very sorry to hear that. Hang in there though, you survived Crohn's, you'll survive this… My wife was on Humira for rheumatoid arthritis. Humira is similar to Remicade. She was diagnosed with...
Not sure if this helps. I've been on both Remicade (8+ years) and Humira (3+ years). I've researched them a lot, and have talked to a few doctors about it. The current tactic (I've been told) is to...
I should add: Based on your "timing", it sounds like the Remicade is working, just that things start to flare up before you get your next dosage. Would be very much worth mentioning this to the GI....
I was on Remicade for about 8 years or so. I'd have that happen very occasionally. I don't think it's the Remicade, as I still have that happen now, and haven't taken Remicade since 2010. I've asked...
Correct, infection would take a while. Being on some of the drugs, however, can subdue your own immune system and speed things up (but not that fast). I got a 1/8" cut on my knuckle last year,...
Don't rule out an infection. While the sting itself can hurt, it can also introduce bacteria into the wound. "Hot and red" are classic signs of not only a sting, but also an infection. I'd say if it...
Unless your weight wildly fluctuates a huge amount, weighting you each time isn't necessary and isn't going to make a difference. I agree, doesn't sound like the Remicade....
I was on Remicade for 8 years. 2002 to 2010. I started off at 5mg/kg, which worked out to 500mg every 8 weeks, when things started to get out of hand, we'd drop it to every 6 or 7 weeks. After about...
I'm 6' 4" 220 or so. Not sure how that figures into what you got, but I started off a 500mg, which should have roughly worked out to 5mg/kg. After a while, I was bumped up to 1000mg, or 10mg/kg. It...
While it may be the cause for an increase, Crohn's disease predates GMO's by a long time. Also, keep in mind that maybe one of the reasons the rate of diagnosis has gone up is because medical...
My insurance doesn't cover it, so I pay out of pocket. Last time I picked up a 10ml bottle, probably back in November, I paid about $12. Even if it had been covered by my insurance, I would have had...
Even with the GBS, I'm still very thankful for the 8+ years of mostly symptom free living. While the GBS really did suck, its hard for me to complain when it worked so well. I've done a lot of...
I was on Remicade for 8+ years and was hit with Gullian Barre Syndrome also. I went from perfectly normal to completely paralyzed in 24 hours. There was some concern, at first, that it was from the...
I'm not on it now, but I was for 8+ years. It seemed to work better the longer I was on it, almost like it builds up in your system over time. Most of the time I was getting Remicade every 8 weeks....
I took Remicade for almost 10 years without any issues. I've since switched to Humira. Even with the risks, the opportunity to live mostly symptom free for going on 13 years now is well worth it. As...
When I was on Remicade, I had to delay it a few times. The effect on the person depends on how well controlled the disease is. Sometimes I could delay it and not have a problem, other times I'd start...
I think it depends on the skill of the doctor performing the spinal tap (aka lumbar puncture). I had one and while not something pleasant, it wasn't unbearable. Keep in mind that if you have Crohn's...
I was on it for about 10 years, and I don't recall ever having a problem with being tired, but I've heard of that issue from a lot of other people, seems to be an individual thing. The infusion...
I'm eager to hear how NCOT is doing. I've often wondered how to tell when we are too dehydrated. I do know that when I am, and can get on an IV, I feel better quickly. I hope this is the case for...
I get the occasional dizziness from time to time. Sometimes from physical exertion, sometimes when I get up in the morning, or when sitting, kneeling. I take a mild diuretic that they have me on to...
On a side note, I seem to have an "every 3 years" cycle with the hospital. Isn't always Crohn's disease, but it seems like for the last 10-12 years I've been hospitalized every 3 years, almost like...
Yeah, I was on Remicade for 2 years, 500mg every 8 weeks. I got down to 500mg every 6 weeks. At about that point, I had a big flare up, ended up getting hospitalized for a week or so. GI bumped me up...
I was on Remicade for 8 or 9 years before I switched to Humira. I really miss my Remicade infusion days. They were some of the only times that I would sit down, relax and do nothing. For the first 8...
I take that back, my worst experience with an NG tube was at an Army hospital that I got sent to. They wanted to do an upper GI test, and for some reason they put the contrast stuff in by NG tube....
My first NG tube experience was pretty bad too. I learned real quick that whenever two nurses come into your room and stand on either side of the bed, bad stuff is going to happen. I learned that one...
Get some dry ice. It'll keep things cold for a long time, especially if you take a small cooler for just the dry ice and Humira, and don't open it until you need to. Actually, with dry ice, you'll...