Tysabri Journal

Wow glad it's working for you so far!! Keep us posted! I really wish I would have known about this. I would have
tried to get in on the study too. I'm not far from the Cleveland Clinic.

Well thought Id update. I have had 3 infusions so far. It must be working. I got on the scale today and I have gained 15 pounds. So now I need to watch what I eat but Its working!!!!!!!

Working for me too! Took a bit longer, but that's alright. I am a week past my 5th infusion now. I did have a bit of a rash this time, like JID mentioned, but on my legs. I am using topical benadryl and it seems to be helping. Thank goodness!

Congrats on your wonderful improvement. I can believe you've had all those views. We're sitting, watching, waiting and thinking maybe this is the one! The one we've been waiting on. Wouldn't that be wonderful.

Continued improvement to you.

Well I decided today that even with all of the success I have had on tysabri that I will be going off it. The benefit does not out weigh the risk in my opinion. Not sure what I'm going to try differently for maintenance but I emailed my doctor to let her know I want off.

I'm considering the same thing myself. I spoke to 2 different GIs about a "drug holiday." There is always a possibility of having a reaction upon re-instating Tysabri treatments (if I ever do), but I have to know if the benefit is worth the risk!!!

I cannot get off the budesonide suppositories and I am at 6 1/2 months (2 weeks post 7th infusion). So... I am skipping my next infusion and continuing the suppositories. (I was not on those before Tysabri.) I'll see if I go downhill or ?? I was still really bad until a week after 3rd infusion -- coincidentally, that's when I started the supporitories. Until I know what's working, I can't risk the Tysabri anymore.

Also, Cimzia has been approved since we started Tysabri. Are you considering trying that? I had such good success with Remicade (until the end), but not as much with Humira. But, I could only get Humira bi-weekly through insurance. I bet now that it's been on the market for a year and a half (since I tried weekly shot approval), there's a better chance insurance would say ok.

I was still terribly sick a week after my third infusion (2 month, 1 week). I went to my old GI (prescribing doc was on vacation) and begged for help. He gave me budesonide suppsotories (as he has in the past) and Xifaxan. Within one week I was stable to really good, depending upon the day. Before those two meds, I had fevers, pain, bleeding, night sweats and 15-26 bathroom trips per day. The biggest difference I noticed was a slight (slight) drop in pain and the vomiting I had been experiencing prior to Tysabri was lessened.

So, I have to wonder in myself -- is it the Tysabri? Did it just suddenly and coincidentally kick in? Or, was it the budesonide and Xifaxan??? I know it could be an additive effect, but I have to figure out. So, my plan is to take a short break to see if I get worse when I stop the Tysabri, but stay on the suppositories and Xifaxan.

I am a single mom to a 10 (almost 11!) year old girl. That factors greatly with regard to the PML. It terrifies me that I am risking something so great when I need to be around for the most confusing years of my daughter's life. I cannot stand that I am risking that...

My prescribing doctor does not feel I should be concerned of the PML risk. Points out that we may never see another case. He also suggests that the overall risks of the TNF alpha blockers are greater on a daily basis and aside from the PML. There is, he says, less risk of infection with Tysabri than with TNF therapy.

sr5599 said...
I was still terribly sick a week after my third infusion (2 month, 1 week). I went to my old GI (prescribing doc was on vacation) and begged for help. He gave me budesonide suppsotories (as he has in the past) and Xifaxan. Within one week I was stable to really good, depending upon the day. Before those two meds, I had fevers, pain, bleeding, night sweats and 15-26 bathroom trips per day. The biggest difference I noticed was a slight (slight) drop in pain and the vomiting I had been experiencing prior to Tysabri was lessened.

So, I have to wonder in myself -- is it the Tysabri? Did it just suddenly and coincidentally kick in? Or, was it the budesonide and Xifaxan??? I know it could be an additive effect, but I have to figure out. So, my plan is to take a short break to see if I get worse when I stop the Tysabri, but stay on the suppositories and Xifaxan.

I am a single mom to a 10 (almost 11!) year old girl. That factors greatly with regard to the PML. It terrifies me that I am risking something so great when I need to be around for the most confusing years of my daughter's life. I cannot stand that I am risking that...

My prescribing doctor does not feel I should be concerned of the PML risk. Points out that we may never see another case. He also suggests that the overall risks of the TNF alpha blockers are greater on a daily basis and aside from the PML. There is, he says, less risk of infection with Tysabri than with TNF therapy.

Interesting that the suppositories and Xifaxan came about at the same time you got better...hopefully those were the trick so you can stay off Tysabri.

It's odd, I've been thinking about the risks and potential benefits for the past couple days, and I go back and forth on it a lot. I'm 18, a sophomore in college, and have a lot of time ahead of me. That makes me want to take it, just for the chance that I'll get some relief out of it, but at the same time, the fact that there is even a small chance of getting a pretty much fatal brain infection is darn scary. I'm still going to do the infusions because I know that the risk of me getting PML has been lessened a great deal because I don't take any immunosuppressants anymore, and all of that. But, it still hangs over my head.

FinalMacGyver said...
I am slatted to have my 7th infusion in the next month and I am looking at stopping for a couple reasons. On one hand I have had great results with tysabri, the difference is night and day. But The PML worries me, the recent FDA watch for possible skim melanoma, the possible liver damage,the cost, and the fact i feel like a ginnea pig. Now my insurances covers it all the cost asosciated with the tysabri after I meet my out of pocket but my insurance has a life time max of 2million. At my present rate I will be 40 with no health insurance. I told the doctor I want to stop but at the same time Im not sure. Humira did not work but I never tried remicade. Im still undecided but thinking of talking to my doctor about remicade.

I definitely hear you with the insurance worries! I'm currently on my mom's plan, but it has a max of 1 million. As of now, I've already burned through around $90,000 from various medications and a cyst removal surgery. It's crazy to think about how expensive all of this stuff is.

Remicade worked great for me for about a year, then it lost effectiveness, just like everything else I've tried. But, lots of people get years and years out of it, so I'd suggest giving it a try.

Update: 8th infusion went well. No reactions at all. feeling pretty good.

More to come!

J

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 hear to stay although the 'mysterious deaths' and the PML issues seem to be lingering.

It's great to hear the success stories on Tysabri. I guess they say it's ~61 response so I represent the other 39%. That's ok because I am doing great without it. After all that, it was the budesonide suppositories that are working for me. One 3mg/day and I am nearly as good as I was while in early days of Remicade. Sadly, I have been dx with osteoporosis. But, my endocrinologist said I can stay on the budesonide at that dose and just start taking Forteo. Another nasty drug, but after 1/1000 with Tysabri, Forteo is not as scary. Hopefully, even with current budesonide treatments, I can rebuild bone with that and be even better.

It's good to hear you guys are doing well.

hspenser - Not so good to hear all you've been through. I am relieved you are feeling better by the day, but I still hate to hear you had to go through all of that!!!