When I was on it, I was on the drug study. over 100 weeks. I took 80ml every week. no issues. it was better than the same dosage every two weeks... but still not enough to get me off of the steroids....
I've been on Tysabri for 14 months. it has been the _only_ think that works for me. i'm off steroids... i eat mostly what i want (though not all... i still have CD!!!) but i highly recommend it for...
Research PML. I forget what it means. To us, it means that 2 people died while on Tysabri. out of 30,000+ that have been on it. Maybe it was 3 people. Point is that Tysabri was FDA approved... then...
Tysabri is a very easy infusion. 1 hr for the drip, 1 hour to be observed. make sure you have eaten something before you go to avoid an infusion reaction. Most of my fellow tysabri-taking buddies...
Tysabri. Remicade if you haven't tried it. Ask about drug studies in your area. There are at least 3 clinical trials going on that may help....
I was on the humira study for about 100 weekly dosages. sometimes i'd skip a week. for me, it didn't make a difference because compared to all of the other drugs out there, humira is pretty mild. but...
Having been on all the drugs there are, I finally settled on Tysabri and have been on it for over a year. There were over 40,000 people on Tysabri (MS patients) before I even started Tysabri. It is...
I met w/ the drug rep on this because I wanted to know more about it. I don't take it everyday although i used to. I've taken between 2 and 10 a day depending on how i feel. I ALWAYS take 2 30-60...
Just an update: Been on Tysabri for just over a year now. Had my 13th infusion a week or so ago. Not on steroids anymore (9 months free of them). Colonoscopy showed much improved colon. Other than...
I realize that what I'm about to say bucks the trend, but I take advil. I take it a lot. I used to take Tylenol but it didn't help me. I even got these debilitating headaches and nothing would help....
So if all the probiotics, which are the best (allegedly) for CD?...
I had my 10th infusion earlier in the week and had my annual scope today. Nearly all of my inflammation is gone, according to the colonoscopy. There is still one section with some inflammation but...
I have an ongoing post about my tysabri experience on this forum somewhere. Other than the occasional headaches (which have been found to not be linked to PML) I've been on Tysabri for 10 months and...
I used to rarely get headaches. Now I get these severe migraine-like headaches now that i'm on tysabri. the tysabri people claim that it is a common side effect. last night, however, i wanted to...
The Tysabri folks might have a list. All I know is that on both Sigma and Aetna they are taking it. And the price was exactly the same on both. J...
I've been on Xifaxan off-and-on for the past couple of years. I take it 'as needed' and that works great! I can relate to the abdominal pain which was just referenced above. I never thought about it...
While my infusion nurse "wasn't sold" on Tysabri due to some early patient 'complications', she has 4 steady success stories (including mine) and so i feel pretty good about the drug. I hope it is...
Update: 8th infusion went well. No reactions at all. feeling pretty good. More to come! J...
I'm on to my 8th (or is it 9th) Tysabri infusion on Wed. I also think I'm one of the very few it is helping out immensely. I am on ZERO other drugs other than Tysabri... and that is from 80mg of pred...
Just to be a "me too" case, I had my 7th infusion last week and I couldn't be feeling much better! Well, I'm more tired in general than I used to be, but no pred will do that to a person. My GI doc...
My Dr called me when the reports were announced. He described it to me as 2 more out of over 40,000 patients on Tysabri. I'm about to be on my 7th dose and I think i'm the only one of the 6 people in...
the prednisone definitely hurt/ruined my taste buds. sweets aren't sweet. fruit is mostly bland. yes, it is an issue. it may just be the disease in general... but i've noticed it for sure!...
One more detail: A very sweet gal that I usually schedule my infusions with was on the tysabri study. when she went back on, it didn't go well and she is no longer my infusion bud. She didn't do well...
Sorry for the disappearing for a while. I had my 5th infusion reaction today. I had to wash out 12 weeks of no humira (I was on the humira study) before i went on tysabri. since i've been on it, im...
I just heard from the nurse. She said that the risk to me is too high. :( i'm kinda bummed. i really want to help this woman....
Sadly, this gal is going to die if she doesn't get a kidney soon. She had one once that was good for about 10 years. Now she needs another one but the constant dialysis has caused her vains to...
I have CD but I also have a friend who is in desperate need of a kidney. I'm consulting my Dr on this, but i wanted to know if any of y'all have ever donated or been given advice on donation. Part of...
Just to clarify, I'm not paying the difference... it looks like the 2k is all the insurance pays and I pay my co-pay and that's it. go figure....
People always talk about what the drugs cost. And I've always guessed. Last night, I asked my wife to log into our Insurance account to see what the costs were. Much to my surprise, they were as...
Update after the 4th infusion: I finished it, but it wasn't as easy as it could have been. About 30 min into the 60 min infusion, i had an infusion reaction of some sort. My vision got spotty and my...
I'd been on the pred off-and-on (mostly on) for the last 8 years. after about 2-3 weeks i was feeling less pred-like and the facial swelling went down a bit. when the headaches and nausea came, i...
Week 15 or so I (i've lost track)... i take probiotics and calcium but other than that i'm pretty much pill free. I still get headaches once in a while, but i'd say that i'm 90% improved. I still...
I've heard good things about Dr. Sunshine as well. recommended to me from someone else. RE: Ivy's comment: If someone isn't satisfied with a doc, posting about that experience 1st hand is protected...
I go to Dr. Wolf at St. Joes. He is supposed to be one of the best if not THE best in GA. I've been seeing him for 7 yrs+ Who does he see now?...
I'm late to the LDN party. How does one get it? Or does a Dr. have to prescribe it? Thanks! I'm glad to hear that so many people are doing well with it!! J...
One more detail RE: taking humira. and i didn't learn this until i was 100 weeks in: After you swab the area that is going to get the injection, WAIT FOR IT TO DRY! If you are like me and you just...
Week 12 update - Took the Tysabri yesterday at 7a. normally it is mixed with a 100ml bag of saline. The nurse accidentally used a 50ml bag and we noticed that when the infusion was done 30 min early....
To add on what everyone else has said, be aware of the 'roid rage. if you take pred in the morning, let's say, at 7a, by 7:30 you are gonna be feeling mean. Or you might cuss someone out and then...
Nope. Not a one. no infusion-related-directly symptoms....
So I'm either really stupid or really lucky. I was on steroids for 8 years and my taper schedule was always pretty aggressive. Since having been on Tysabri I wanted to taper to so i went 60 to 50 to...
I saw a dermatologist shortly after tapering off of Pred. they all seem sooooooooooo surprised that one would break-out when getting OFF of the steroids. but i had the same withdrawl-type symtoms of...
Cimzia. that was the 3rd one i was thinking of. http://www.healingwell.com/community/default.aspx?f=17&m=1106379...
Jason - Good luck! I get my Tysabri headache ~20 hrs after the infusion. so far i'm 2 for 2. I also get headaches around 4p most days (although today was an exception so maybe it will get better)....
After 3 months, i was like 'hum... I think it is doing something, but not much'. At 100 weeks, i said 'let's try something else'. during the wash-out period (3 months) I realized it had been helping,...
I was given some topical stuff and some pills that i'm suppose to take 2/day. then come back in 6 weeks. Other than looking like a 14-year-old with pizza-face it doesn't hurt or anything. But i look...
After my 2nd dosage of Tysabri, my face broke out in something that looked like hives and acne. I went to a dermatologist after it wouldn't go away for a week. and wouldn't you know it she said "was...
my doc had recommended the florastor so i've been on it for about a month. i hadn't thought about the gas issue but now that you mention it, i think i played JAWS in its entirety 3 or 4 times between...
I heard about this yesterday from the study coordinator at the dr's office that I go to. She said that this biologic had very strong success in the study patients they had. I don't know anything...
I was on Humira for ~100 weeks with a weekly injection. It didn't do much for me. or so i thought. Then I got off of it and I really flared. But the humira didn't help me _enough_. and enough would...
Whatever the headache factor is, neither the nurse nor my doc knew about it. But I DEFINITELY had it both times. I walk out of the infusion feeling fine but it is that night or the next morning that...