- Joined
- Mar 26, 2013
- Messages
- 4
Hey all. I was diagnosed with Crohn's Colitis last October. Been on Lialda since then and have had a few spouts of flares. My flares aren't of the normal variety....mostly. I typically get fevers, night sweats, chills, aches in my back and legs, but never really have major stomach pains or issues.
Now, for months my gastro has been telling me that these are NOT Crohn's flare ups. It doesn't make sense why every so often I would have the EXACT same symptoms for anywhere between 24-72 hours minimum. I sometimes get the feeling like my doctor thinks I'm a hypochondriac, but whatever. You can't fake a fever.
Anyways, a few months ago, my gastro wanted me to get on MP6 to begin more advanced treatment of my disease. I wanted to do research about it so I waited until our next appointment (June) and we both decided to give it a shot. 75 mgs is what we agreed upon, and we'd meet in July to get bloodwork results.
Two weeks later, I skipped one pill accidentally. The following day I took the regular dose and within hours I felt super sick. Nauseas, fever, throat/tongue sore/swollen, chills or night sweats, terrible back pain, vomited once, etc. Still no tummy pain. I went to my regular doctor, and he told me to stop taking the MP6 and within 24-72 hours, the problems stopped. My white blood cell count also was high during the time of illness. The doctor agreed with my Gastro thinking it wasn't side effects but a result of a potential infection of some sort. A week later at my gastro appointment, he said they needed a better response to my bloodwork for the Crohn's, stating that he wanted to double the dose. I also had some blood work done again for my regular doctor, before I began taking the MP6 again, and my white blood cell count was low. My gastro also said if we get a similar reaction to MP6, we're done with that drug.
This past Thursday at 3:30 pm EST, I doubled the dose as requested to 3 pills a.k.a. 150 mgs (up from 1.5 or 75 mgs.) That night I felt even worse, vomiting everything I drank/ate, even water. Same exact symptoms, only way worse. I was running a temp of 103. Went to the emergency room, they admitted me and tested me for C-Diff, twice, which came back negative. I spoke with several gastros and told them my whole story. They were shocked my doctor hadn't put me on some sort of steroid like Predezone (sorry spelling,) to calm down my bowels. They put my on a liquid diet over the weekend, and Sunday I was finally able to hold down solid food. I'm waiting on my gastro to call back after reviewing the CT Scan and X-Ray that was done (both of which show inflammation of the ileum, a.k.a. Crohn's flareup.)
Here's my questions: 1-After getting back on solid foods, I notice my bowel movements have been much smaller. They've got me on Flagyl and Cipro since I reacted ok to them for now during IV fusion. BM have been dusty, with very little coming out despite my appetite coming back. For the first few days out of the hospital I was nauseous. I've also had a little belly pain in my groin area which is where I believe the colon is. I know Flagyl can do this to you, but I was wondering, am I backed up? The nausea has come and gone, but I've had this happen before after switching to all liquid diet and it takes a while for my regular BMs to come back. Either way, I'm taking Colace as well to help with this. Just wondering...
Secondly, MP6....has anyone heard of this happening before? It seems like an allergic reaction based on the tongue/throat swelling up within hours. Seems like a strange coincidence that I would have a flare up when I take MP6. Any ideas?
Also, does anyone have any helpful tips about getting the costs down for Humira? I'll be meeting with my Gastro soon to talk about this as our next option and wanted to know how we can approach the cost issue on an insurance level. I normally have pretty good insurance, but I can't even afford Lialda at $80 a month (living off doctor samples at the moment.) So I'm worried about how the heck I could possibly afford Humira? Thanks all!
Now, for months my gastro has been telling me that these are NOT Crohn's flare ups. It doesn't make sense why every so often I would have the EXACT same symptoms for anywhere between 24-72 hours minimum. I sometimes get the feeling like my doctor thinks I'm a hypochondriac, but whatever. You can't fake a fever.
Anyways, a few months ago, my gastro wanted me to get on MP6 to begin more advanced treatment of my disease. I wanted to do research about it so I waited until our next appointment (June) and we both decided to give it a shot. 75 mgs is what we agreed upon, and we'd meet in July to get bloodwork results.
Two weeks later, I skipped one pill accidentally. The following day I took the regular dose and within hours I felt super sick. Nauseas, fever, throat/tongue sore/swollen, chills or night sweats, terrible back pain, vomited once, etc. Still no tummy pain. I went to my regular doctor, and he told me to stop taking the MP6 and within 24-72 hours, the problems stopped. My white blood cell count also was high during the time of illness. The doctor agreed with my Gastro thinking it wasn't side effects but a result of a potential infection of some sort. A week later at my gastro appointment, he said they needed a better response to my bloodwork for the Crohn's, stating that he wanted to double the dose. I also had some blood work done again for my regular doctor, before I began taking the MP6 again, and my white blood cell count was low. My gastro also said if we get a similar reaction to MP6, we're done with that drug.
This past Thursday at 3:30 pm EST, I doubled the dose as requested to 3 pills a.k.a. 150 mgs (up from 1.5 or 75 mgs.) That night I felt even worse, vomiting everything I drank/ate, even water. Same exact symptoms, only way worse. I was running a temp of 103. Went to the emergency room, they admitted me and tested me for C-Diff, twice, which came back negative. I spoke with several gastros and told them my whole story. They were shocked my doctor hadn't put me on some sort of steroid like Predezone (sorry spelling,) to calm down my bowels. They put my on a liquid diet over the weekend, and Sunday I was finally able to hold down solid food. I'm waiting on my gastro to call back after reviewing the CT Scan and X-Ray that was done (both of which show inflammation of the ileum, a.k.a. Crohn's flareup.)
Here's my questions: 1-After getting back on solid foods, I notice my bowel movements have been much smaller. They've got me on Flagyl and Cipro since I reacted ok to them for now during IV fusion. BM have been dusty, with very little coming out despite my appetite coming back. For the first few days out of the hospital I was nauseous. I've also had a little belly pain in my groin area which is where I believe the colon is. I know Flagyl can do this to you, but I was wondering, am I backed up? The nausea has come and gone, but I've had this happen before after switching to all liquid diet and it takes a while for my regular BMs to come back. Either way, I'm taking Colace as well to help with this. Just wondering...
Secondly, MP6....has anyone heard of this happening before? It seems like an allergic reaction based on the tongue/throat swelling up within hours. Seems like a strange coincidence that I would have a flare up when I take MP6. Any ideas?
Also, does anyone have any helpful tips about getting the costs down for Humira? I'll be meeting with my Gastro soon to talk about this as our next option and wanted to know how we can approach the cost issue on an insurance level. I normally have pretty good insurance, but I can't even afford Lialda at $80 a month (living off doctor samples at the moment.) So I'm worried about how the heck I could possibly afford Humira? Thanks all!
