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Posted 4/26/2008 4:34 PM (GMT 0)
Well I start tysabri this week and I hasn't quite hit yet. When I started HUMIRA I was nervous about the side effects and got so worked up I was got sick in the parking lot at the doctors office before my first four shots. Not sure why but tysabri has not made me nervous at all and that seems a little weird with some of the potential effects of the drug.

So I decided to keep a updating journal of how it is doing. I go in for tysabri on wednesday at the Cleveland Clinic, one of only 21 patients taking it there. I have UHC health insurance and was told I had no need for approval because they recently added Crohn's to a list of there covered diseases. I have not found out what I will pay yet and that is what is making me the most nervous, Im going to call the doctor on monday to see what's up.

Going in I have very few symptoms, I've been on prednisone since august and have stepped down to 5mg a week and will be done on wednesday. Today is the first day Ive had D in a month and no other symptoms as of yet. Ill keep everyone updated on tysabri as It begins.

Jason
Posted 4/26/2008 10:59 PM (GMT 0)
Hi Jason I hope you have good benefits with this med. I don't know much about this med but will be looking forward to hearing how your doing on it. I got off the pred. too seemed to take forever to get off it. So you are much more relaxed now with the Tysabri that is good so how is it administered? Best of luck and keep in touch .lol gail
Posted 4/26/2008 11:33 PM (GMT 0)
Hi Jason,

You've probably heard a little from Jid and myself that it takes a bit for Tysabri to kick in. I think I am responding, but it's a slower progress than Remicade. (Didn't respond to Humira.) Then again, they give "loading doses" of Remicade and Humira, so it makes sense if I think of it that way.

I just decided I am going to start my own rating scale journal so that I can track my progress with Tysabri. The one thing that's nice about trials is that you get your CDAI monitored! I need to keep my own records to make sure I am responding. I did drop all the way to 4mg of the steroids though. That's good news for me!

Gail -- it's an infusion (no pre-meds) -- 1 hour followed by 1 hour observation.
Posted 4/27/2008 1:14 AM (GMT 0)
I had not effect from the HUMIR either Im hoping this works I do amazing on Prednisone, so good it's like no issues at all I hope this gives me the same results in the end. I was disappointed with HUMIRA, my GI start 5 of his patients on HUMIRA the same month and I was the only one with no results.
Posted 4/30/2008 11:26 PM (GMT 0)
Okay welll here it is day one. I had my infusion at the cleveland clinic at 9:30 this morning. Today was also the first day with no predisone, so I think determining what is causing the symptoms may be difficult. As of right now The only thing that I have is a slight headache. When I got back from the Clinic I slept about 4 hours but so far so good, no reaction during infusion and nothing really as of yet. Fingers crossed.
~Jason
Posted 5/1/2008 12:24 AM (GMT 0)
Hi Great Jason got my fingers crossed for you to. lol gail
Posted 5/1/2008 3:42 AM (GMT 0)
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). Please keep us all posted and I'll keep my fingers crossed for you! I go back for my 3rd infusion next week.

Also, remember that this drug doesn't work overnight. it took me 3-4 weeks before i started to notice anything. some others have reported similar experiences while some other others (lol!) have had different experiences.

what i don't follow is why they tapers you off of Pred before the tysabri. protocol for the drug says you have 6 months to get off of steroids, but you don't have to be off of it BEFORE you start...

Any ideas on that one?

J
Posted 5/1/2008 4:34 AM (GMT 0)
I am 5 1/2 weeks into it. I am just now at 4mg methylpred. Next week I will alternate days on/off. With that in mind, I feel like I am indeed responding to the Tysabri. My pain during BMs is much less (no more crying or vomiting) which is great. My overall pain level is about half what it used to be. Night sweats still hit and miss, but having gone for months changing my shirt 4 times (soaked!) each night, I'd still say that's good. No fever either after 2 months of fevers!

But, I am still producing mucous, though not really blood. My fistula doesn't seem to be draining quite as much. I am still thankful for this progress, especially given that I am almost off steroids. I've been in a constant flare for a year and a half.

I am also thankful to have contact with others going through the same thing with the Tysabri treatments. I hope that we all feel great in a few months!
Posted 5/2/2008 1:54 AM (GMT 0)
Hi Jason. Keep us posted on how you do. Here's to good response and a lasting remission!
Posted 5/2/2008 8:57 PM (GMT 0)
Jason, et al:

Good luck. I just had my first Tysabari infusion the same day you did -- April 30. I don't expect to see any results until maybe the 2nd infusion at the end of this month.

Relevant side notes:

a) I was in the clinical trials for this medicine until the trials were stopped about 4 years ago. Tysabari is the ONLY medicine that has helped alleviate my CD symptoms. During the trials, I measured about an 80 percent improvement --based on the number of days in a month where I was MISERABLE versus DOING OK. I went from 25 miserable days to about 5 during the time I was on the medicine. I also remained comparatively OK for another year or more after I was forced to discontinue. I sure hope I get similar results this time (no guarantee).

b) A rep from Elan was present during my infusion. He was there because there had been a huge series of bureaucratic nightmares getting started on this. It took 34 days from when I signed on to actually get the medicine. And get this -- I am the FIRST CD patient in the entire Mid-Atlantic states (Maryland, Delaware, Virgina, and Washington, DC) to get this medicine.

Should I get a prize, or what?

I've been through the ringer this past year: Humira -- total disaster (hives, rash, no positive results); Remicade: no results at all; Prednisone -- short=term relief with 40 or more MG, but the side effects are terrible -- serious osteoporosis, elevated glucose level, night sweats, weight gain, bloating, red-puffy face, and walking around like a frickin' ZOMBIE....

Cautiously optimistic.

Terry in Virginia
Posted 5/2/2008 10:35 PM (GMT 0)
Hi Terry...

Thanks for joining in. So, when you were in the trial, was it after the second infusion that you saw the results? And, was that the peak of the results? Or, did you continue to improve as more time went by?

I worry that I am showing a response, but is this as good as it will get?! I am now at week 6. It's certainly an improvement, but there is still so much more i wish for -- no night sweats, more control over bms, no mucous drainage ick -- you know, stuff like that!

Thanks!
Posted 5/15/2008 1:56 AM (GMT 0)
so I think it's working. Ive been off of steroids now for two weeks with no side effects. Fingers crossed I go back on the 28th. Today I was reviewing my online statement and it cost $7,730 for one treatment!!! Should all be covered but wow. I though humria was expensive
Posted 5/15/2008 3:34 AM (GMT 0)
Holy Toledo! I had to check my claim sheet! $7,481 per treatment! That's insane!
Posted 5/16/2008 3:13 PM (GMT 0)

FinalMacGyver said...
so I think it's working. Ive been off of steroids now for two weeks with no side effects. Fingers crossed I go back on the 28th. Today I was reviewing my online statement and it cost $7,730 for one treatment!!! Should all be covered but wow. I though humria was expensive

Back in the day.....when I was I was test rat for Tysabri....they kept telling me that treatments, once approved for public use, would be aound 7 or 8 thousand dollars....and this was several years ago.

seems they knew what they were talking about and the Tysabri folks had a price target they have kept.  That means the cost per year is over 92 thousand if you get monthly treatments...versus Humira at around 39 thou a year.   Who can afford this stuff without insurance?

Posted 5/16/2008 4:17 PM (GMT 0)
No kidding! To me this is way out of control. Sure my insurance is covering it, but... what about lifetime max on the policy! I sure hope, as a country, the US can figure out it's medical care situation!
Posted 5/16/2008 5:49 PM (GMT 0)

sr5599 said...
No kidding! To me this is way out of control. Sure my insurance is covering it, but... what about lifetime max on the policy! I sure hope, as a country, the US can figure out it's medical care situation!

they have figured it...become a senator or congressman and you have the best socialized medicine program in the world
Posted 5/20/2008 8:50 PM (GMT 0)
well I'm going to err on the side of caution and say I think it is working. I have been off of predisone for 3 weeks with no symptoms what so ever for two weeks. This has been the best two weeks ever!!!!
Posted 5/22/2008 1:38 AM (GMT 0)
That's amazing, MacGyver! What does it feel like, to have no symptoms? Do you have fatigue? Can you feel your gut at all? Can you eat whatever you want?
Posted 5/22/2008 1:44 AM (GMT 0)
... Man... I would love to be able to eat whatever I want.... :)
Posted 5/22/2008 1:50 AM (GMT 0)
Yesterday I had a can of mountain dew and some doritos for the first time in a year and had no issues. Every once in a while i get a little rumble but nothing else as of yet :) Hope this lasts!!
Posted 5/22/2008 1:58 AM (GMT 0)
Wow. That's incredible.

Shari, did you get that well on Prochymal?
Posted 5/25/2008 10:47 PM (GMT 0)

FinalMacGyver said...
Yesterday I had a can of mountain dew and some doritos for the first time in a year and had no issues. Every once in a while i get a little rumble but nothing else as of yet :) Hope this lasts!!

I hope it lasts for you...it should...your description is what i felt for the almost 2 years I was it during the trials.  Hopefully it will work for me after so much time off of it.

I am waiting for my insurance to approve the treatment.

The only downside with the Tysabri for me...maybe not for others...is that as soon as I quit using it, I was back to the very bad days.

Posted 5/25/2008 11:33 PM (GMT 0)
I was surprised at how quick it was approve. I have uhc and humira took more than a month and tysabri took 5 days. The nurse was telling me that UHC just added crohns to there list of diseases. Whatever that means.
Posted 5/26/2008 1:37 AM (GMT 0)
Ivy - Yes, Prochymal was the wonder drug for me. After 10 days I was better than I am now after 3 infusions of Tysabri! (I was checking copies of my CDAI diary the other day). Unfortunately, I am not really responding to Tysabri and am in the process now of deciding whether to try a fourth infusion or give up now. Even my fevers started coming back which should not be happening if Tysabri is working!

I went back to my old doc for a second opinion because he was the first center within 90 miles of Portland (OR) to be certified for Tysabri. He agrees that, while it's not yet a compelete wash-out, it's not looking very good on the Tysabri front. I may just do one more.

I am *back* on methylpred (16mg) and added Xifanan to the group. Today I felt pretty good! It was my first day without a fever in a while and my fistula did not drain. So maybe a fluke and maybe the Xifanan will help.

Prochymal is still a ways off. I only wish I could get my hands on it now!

I am so glad to hear that jid and FinalMacGyver are having good luck, though! it's so nice to know it's helping people.
Posted 5/29/2008 1:57 AM (GMT 0)
Well I had my second infusion today. For some reason they wanted to do the infusion over a 1 1/2 hour period rather than the hour. So I was there a lot longer today. They gave me tylenol for that head ache I got last time and so far today I have no headache!! :)
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