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Ulcerative Colitis
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Posted 1/22/2014 4:26 AM (GMT 0)
I've been in a flare since the July and started uceris which helped a bit but by the beginning of September I was back at the doctors for a flex sigmoidoscopy. After that I started Simponi since I have already failed Remicade and Humira. In December, I was finally feeling bad enough I agreed to go on prednisone which I hate because of the side effects. Finally I felt great for about three weeks, but then when I got down to 20 mg prednisone I began bleeding again and feeling horrible.
Talked to my nurse again today and was told my doctor wants me to come in and talk about going on tysabri. Anyone else on tysabri? I feel like my doctor is at a loss for what to do with me since did not respond at all to humira or simponi. I also really don't like feeling like a ginny pig, just trying anything and everything trying to feel well.
Posted 1/22/2014 5:01 AM (GMT 0)
I would think that Cyclosporine would be the next step, it is very affective but may require a hospital stay. You would need to be monitored closely by a GI who is experienced with Cyclosporine. I've used Cyclosporine twice in the past which put me into remission both times.

I was offered Tsybri over this past summer when I refused to take Cyclosporine for the 3rd time. I refused it because I didn't want to go into the hospital without having surgery.

I chose not to use Tysbri either because I had really made up my mind that I wanted surgery and didn't want to continue with medications and UC anymore.

I too failed Remicade, Humira, Simponi and Uceris. I made the right decision for myself when I opted for surgery. I felt great after surgery (hard to explain but you don't feel like your body is poisoning itself anymore) the next day. I wish that I had gone sooner for surgery.
Posted 1/22/2014 5:07 AM (GMT 0)
You may want to research it on the Crohns forum, there are a few people who are using Tysbri there.

Cyclosporine has been used for UC since the early 90's and decades before that for kidney and liver transplants, you definitely wouldn't be a Ginny Pig except for the fact that your GI might not have used it before.
Posted 1/22/2014 1:26 PM (GMT 0)
There is a small risk of PML when taking Tysabri.   Even though it is very rare to develop PML, it is usually always fatal.  For that reason, I would not take the drug. 

Table 1. Estimated Incidence of PML in the Postmarketing Setting through January 11, 2011

Duration of Therapy
(Number of Infusions)		PML Incidence per 1,000 Patients

Up to 240.3

25-361.5

37-480.9

Posted 1/22/2014 1:33 PM (GMT 0)
www.thisisms.com/forum/tysabri-antegren-or-natalizumab-f11/

You might want to take a look at this Tysabri section on a multiple sclerosis forum.

BTW they have a continual thread where they track the PML cases...looks like it's 418 now...
Posted 1/22/2014 1:38 PM (GMT 0)
How bad are your symptoms? Sometimes I think both patients and doctors are too obsessed with remission if your symptoms really aren't horrible. While remission would be great I refuse to take all of these dangerous drugs. For me, they aren't worth the risk since I'm not doing so bad in the first place. If I were to get much worse I would have to re-evaluate.
Posted 1/22/2014 2:29 PM (GMT 0)

Indycat23 said...
There is a small risk of PML when taking Tysabri. Even though it is very rare to develop PML, it is usually always fatal. For that reason, I would not take the drug.

Table 1. Estimated Incidence of PML in the Postmarketing Setting through January 11, 2011

<th id="header1" scope="col">Duration of Therapy
(Number of Infusions)</th><th id="header3" scope="col">PML Incidence per 1,000 Patients
</th>
Up to 240.3
25-361.5
37-480.9


You have to be really cautious with the way you approach those statistics. What's reported to the FDA does not represent the actual PML incidents in any way, shape or form. You have to multiply the reported numbers by 10 to get a rough underestimate of the actual events.
Ehealthme has the current number at 2,583 out of 90,294. Again, this is a rough underestimate since most adverse incidents are not reported. PML is usually fatal, so you can count those as deaths.
Even going by the ehealthme numbers, I can't fathom why this is considered acceptable for any pharmaceutical company. It's esentially a profit for lives scheme. Tysabri was recalled initially for these reasons, and then put back on the market for various reasons.
To the OP, tysabri represents the worst of corporate greed and what pharmaceutical companies have to offer. If you want the true definition of death panels, this is it.
I think it's time to look past biologics since you failed the ones for UC (this is pretty typical). Look up Terry Wahls and her protocol. She was on tysabri as well.

Post Edited (StealthGuardian) : 1/22/2014 7:32:00 AM (GMT-7)

Posted 1/22/2014 3:36 PM (GMT 0)
but gary, the thing about being symptomatic is that even if your day to day symptoms aren't too bad, there are still cellular changes going on that show up on scopes. I personally feel "ok" day to day, yet am 90% sure my colon will be gone within 3-4 months. You can't "feel" cancer growing, or "feel" ulcerations or polyps, yet they're there. Unfortunately, I don't think you can base the severity of UC on symptoms alone. Certainly if you're in a massive flare you can, but if someone has long-standing chronic inflammation, then no. And we all know the "new normal" argument... my normal is pooping my pants every now & then! I mean, come on- something is not right, even though I may feel ok. My GI just said to me after my scope last week "There is no way you feel ok- you are sick! You're just used to the way you feel." And I know he's right. As far as Tysabri goes- no way, never... just another med to fail, & potentially die from. You'd look great in a coffin, intact colon, but seriously brain damaged! Not to be too doosmday, but..... that is one seriously frightening med. Sorry to hear this, redrox- has your doctor ever brought up surgery to you?
Posted 1/22/2014 3:41 PM (GMT 0)
Yeah Gary I'm not sure how that'd play out in my case. My symptoms are usually a little blood, softer stool, a little white mucus, and going three or max four times a day. This is all the while I have had moderate to severe inflammation in places...
Posted 1/22/2014 4:36 PM (GMT 0)
First of all, now that we know what we know about the interaction among PML/the JC virus/Tysabri, the risk is much lower. Obviously if you are positive for JCV Tysabri should NOT be on the table. The risk is too darn high.

Is there any doubt about your UC diagnosis? In my opinion, Tysabri makes sense for diseases where surgery isn't as effective as it is in UC... So, for example, in multiple sclerosis, it's not like you can surgically remove the myelin from your nerves. Meds are all you have, so for a lot of MS patients Tysabri is more than worth the risk. For UC it doesn't make sense to me. If it's possible your IBD is actually Crohn's, that might be more reasonable. Either way, I wouldn't go on Tysabri without a second opinion from a GI that specializes in IBD.

For what it's worth, I was given the option of trying Tysabri or Xeljanz before surgery and I chose not to. We have 30+ years of data about surgical outcomes, not so with new biologics.
Posted 1/22/2014 6:03 PM (GMT 0)
I have never heard of this being used for UC but since others here have been offered it maybe it's something new for UC. If you are willing to try a harsh drug then I would ask about Cyclosporine first. I had a 7 day hospital stay where I had cyclosporine administered via IV. It stopped my flare dead in its tracks. They then sent me home with the oral cyclosporine and I stayed on it for a few months until it stopped working. So it gave me relief but it didn't last.
Posted 1/23/2014 5:19 AM (GMT 0)
After failing Remi.,my daughter was offered Vedolizumab.It provided remission from Sept. tlll last week. Back to a medium flare, but it did buy some time.Got her thru another semester. Side effects minimal,after getting up to the correct dosing. Pill form,so easy to administer, and not expensive. Lots of data on it for transplant recipients. Might be worth a look/see.
Posted 1/23/2014 5:59 PM (GMT 0)
I'm throwing IVIG out there! Saved my life and got me into remission for 3 ish years with a little blip here and there.
Posted 1/27/2014 5:32 AM (GMT 0)
Thanks for the replies... I'm going to look into a few more things before I get to see my GI doctor on the 13th. I'm just ready to get off prednisone because although it helps, it also kills me more this all the side effects.
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