simplified, has your son seen an allergist? My allergist tested for MCAD by doing the tryptase blood test. (It came back normal, so his explanation as to why I had developed so many food allergies...
I had osteopenia in 2008 and then my bone density went back to normal in 2010. When I got my DEXA results a few months ago, I was really surprised to see that I was back to having osteopenia--I do a...
I have never heard of cutting down the dose like--I've heard of people spacing out infusions further or completely going off of Remicade (the latter is my current GI's perspective--either stay on it...
1. About 7 months 2. I've had to deal with IBS and several other non-UC issues, but no UC setbacks. 3. I've stayed on mesalamine the entire time and required steroid and mesalamine suppositories for...
My current GI recommends going off of Remicade IF biopsies show no inflammation--her view is that one should be on the least amount of meds while sustaining remission. However, my old GI has said...
I would err on the side of caution and not use oral acne meds. My derm gave me a topical antibiotic (can't remember what it's called, but it started with a Z) and even the patient instructions said...
Yes--I asked my allergist about it because I've developed so many food allergies in the past couple of years. He said it was rare but agreed to test my tryptase levels-->20 ng/ml indicates mast cell...
Yep, if you're only on Asacol, you should be okay to get all vaccines (live or dead). For those of us on Imuran, 6MP, Remicade, Humira, etc., we can only get dead vaccines....
Goldberg is a total scam--don't waste your time, money, and sanity (seriously, I had to start therapy after seeing him b/c he was so terrible to me and I was angry at myself for falling for it). IF...
It's funny that you're posting this--I'm kind of in the same boat...my current GI says that if you've been in remission for a few years, she'd rather not have you taking medication if you don't need...
Cincinnati Children's is one of the top pediatric GI hospitals--see if you can get a second opinion there....
I think I posted this before on a thread about your wife, but I'll post it again: http://www.livingwithhypersomnia.com/ True hypersomnia can be determined by a spinal tap, but I think only Emory does...
If she's still feeling sleepy after sleeping 9-10 hours and her thyroid is under control and her vit D, B12, iron levels are okay, look into hypersomnia: http://www.livingwithhypersomnia.com/ ....
I'm sorry to hear about your son's diagnosis. I agree with others that say he needs to be on mesalamine (probably both oral and rectal). Prednisone is not a long-term solution--it can induce...
I have ulcerative colitis and endo. My endo got much worse after UC. When I took birth control to help the endo, it made my periods worse and caused a UC flare (as in, it took me 11 months to get...
I'm so sorry to hear this. It always breaks my heart when I hear about little ones having to deal with this. First, you may want to also post on DragonPack:...
What Judy said. Thoreau, how certain are you that your other symptoms are Remi-related? I'd be worried about having surgery and then those symptoms still not going away....
Based on your sleepiness, it sounds like you might have hypersomnia: http://www.livingwithhypersomnia.com/ I have the same exact sleepiness issues as you and thought it was CFS for several years. But...
Been on Remicade for over 5.5 years (somewhere around 38 infusions) and in remission for 5 years....
Yay, mods! Thank you :)...
I haven't dated since I've been dealing with various health issues since 18 (and my fields of study in college and grad school were very female-dominated, so no chance meetings at school). I used to...
I know that the drive will be a couple hours, but the Children's Hospital of Philadelphia is one of the top pediatric GI hospitals (the other two being Boston and Cincinnati). They have an IBD...
Swollen lymph nodes are a side effect of Remicade. I've had one swollen lymph node over the past year that comes and goes....
I had the Doctors Data stool test done last year...I think it was a waste of money. I stopped going to the alt doc who ordered it because he was rude and didn't listen to me. The alt doc I currently...
PK--I took the methylated B vitamins for 4 months. My B12 count did increase by several hundred units (from mid-normal range to above normal range)--no improvement in any symptoms. So do you think...
The only thing this integrative MD recommended was the Candicid Forte supplement, and if I tolerated that to add Inulin (which doesn't make sense b/c it's high in FOS and I know that I have issues...
This yeast/Candida stuff is killing me. Under the "care" of an integrative MD for all of my non-UC stuff (IBS, sleepiness/fatigue, endometriosis, allergies), I started this supplement 3 weeks ago:...
I think the IBD/VTE connection has been discovered recently (not that it's an excuse for the hospital); I don't remember reading anything about it when I first researched IBD in 2007/2008. Cincinnati...
This is what the integrative MD gave me for poor methylation: http://www.orthomolecularproducts.com/ProductDetails.aspx?id=fd753517-2807-45fa-92bf-f93182723dfe. PK, what do you think?...
I saw an integrative MD for my non-UC issues, and she wants to rule poor methylation. She said that the only way to test for poor methylation was this $825 test, to which I said no. As far as...
My 5-year Remi-versary is this week. I've heard of people with CD being on Remicade for 10-15 years; I don't think it's been approved for UC that long, but I'm sure people can stay on it long-term....
What happens with pure whey protein?...
A lot of people can be positive for ANA but not have lupus (in fact, a lot of people with any AI disease have positive ANA), so I'd recommend having all of the lupus tests done (anti dsDNA,...
The reason I was asking is because I have oral allergy syndrome--it's not a true food allergy, but I get burning and itchiness on my lips, in my throat, and in my ears if I eat fresh fruits and...
My parents (and everyone else in the world) ask if/when I'll get a boyfriend. But I'm sure they'd be asking regardless of UC. I would hope people are more understanding in their 30's. I find that...
This may not be helpful...but can you start her on allergy meds? I'm pretty sure zyrtec/benadryl, claritin, and allegra have different chemical make-ups, so you could tackle the histamine in more...
How much does it drop by? I'm surprised that you're getting iron infusions for a hemoglobin of 10. I've always had a hemoglobin of 10-12 (even pre-UC) and was never recommended for iron infusions by...
Oh my goodness, Joanna. I'm glad you're at home and doing (relatively) okay. Because you've had such a reaction to IVIG (did you have any reactions to Remicade when you were on it?), maybe you can...
Which labs did you have done?...
I was born in northeastern US and raised in the midwest, but my parents are from India (Gujarat). Naturally, my parents blame me and my type A/anxiety-prone personality for the UC. I suppose I can...
Are you going to continue with Remicade? It took me 5 infusions plus the right combo of rectal meds to get into remission. I know Remicade isn't the most ideal option (I'm an adult, and my parents...
I've been on Remicade for over 4.5 years--still working. I have had a few reactions (migraine, joint pain, chest tightness) during/right after the infusion, but they rarely occur since I've slowed...
Another link: http://www.bloomberg.com/news/2013-03-06/salt-may-boost-immune-diseases-through-inflammation.html What's relevant to us: "What’s more, autoimmune diseases vary, O’Shea said. Blocking...
I was in the middle of AP exams, just a few weeks away from high school graduation....
I second the pro/con lists....
Twelve years ago--when the doctor *had* colitis--there was no Remicade, there wasn't much known about probiotics, etc. I can understand why he wouldn't want to take steroids, but what about...
Ugh, people don't understand if they aren't chronically ill. I had a grad school friend once tell me to just get out of my apartment and drive around...except I had been having awful migraines and...
Yes, although neither my allergist or GI thought it was due to Remicade. I know that if I go a few days without taking Zyrtec, the itchiness comes back. I don't get hives though--just itchiness and...
Hi psalm 18:30, the procedure is called LAPEX. Here's the link to my surgeon's website: http://centerforendo.com/. There are only a few in the US who do it--Drs. Albee & Sinervo in Atlanta, Dr. Tamer...
Do you know what kind of endo surgery you had? There are two kinds: one that removes the endo from the surface, allowing it to grow back; another removes the endo from the roots so that the chance of...