NeuroTalk Support Groups - Tysabri Information and Check In part 2

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- - Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

Well, I may or may not be getting my infusion on Monday. Seems my insurance deductible went from $1000 a year to $1500 without any notification to me! On the plus side, i was approved for medicaid due to the not being able to work thing... still waiting in disability decision but that is a whole new topic. So I was approved for medicaid and it was back dated to jan 1... I was told.... but I still have not received my card or any info on it. But I still have my Cobra until mid Feb.

The hospital was told by the Cobra ins that I had to pay the $1500 for the infusion. They are willing to make a payment plan with me, provided I come up with at least $300 by Monday.... Kind of hard to do when I haven't worked in over a year and SSDI has me in limbo once again... My only income right now is child support... so now I dunno. Hoping it can be resolved tomorrow.

Tysabri #42 past Fri

Still love my Ty but concerned about odds of pml with over 40 infusions :( More info now at chefarztfrau.de/?page_id=716 On this site it lists a pml case as having 52 infusions; only possible if from trials and they haven't counted those users in the stats. (now I'm wondering if in the U.S. - think it was :confused:) Wish my rememberer was better :p
I found on another article that there are 2,000 on Ty over 3yrs. If this is world wide:( if only U.S. better but, still not great.

Wishing all of us well,
Linda

Well, darn!! :mad: I took my prophylactic antibiotics (the day before, of, and after the infusion) and then 2 days after I stopped I got a UTI again!! Ergh. I've wiped it out with a week of Cipro and a shot of 1 gram of Rocephin from the urologist.

But I don't think the neurologist will be happy. Clearly I am now destined for continuing the Tysabri every 8 weeks plan. The urologist did give me a week's worth of antibiotics to take when I get future infusions--maybe that will prevent any more but I don't like having to take so many antibiotics. On the other hand, I don't want to go off Tysabri. :(

Yikes Natalie!

I do NOT envy you! One was enough for me!

Quote:

Originally Posted by legzzalot (Post 615538)

Legzz,

Have you heard anymore as to whether you can get some help?
There are options out there. Biogen cannot help with infusion costs but one of these resources may be able to help. You could also call Medicaid and tell them what is going on and maybe they will give you your numbers, since you are already approved.

GENERAL FINANCIAL ASSISTANCE
Partnership for Prescription Assistance (888) 477-2669
The Medicine Program (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council (866) 794-3571
Alternative Funding Group (866) 426-2906
Patient Access Network (866) 316-7261
Bridges to Access (866) 728-4368
Rx Outreach (800) 769-3880

Natalie, so sorry you just keep getting UTIs :hug: I give you so much credit for hanging in ... I love my Ty but don't know if I could/would be as tough as you! I guess I would have to be... Maybe every 8 weeks will give your body time to recover so you won't get a UTI. I truly hope so!
Linda

Quote:

Originally Posted by Riverwild (Post 534677)

Hello MdotDdot and welcome to the Tysabri thread.

I have to disagree with some of your post.

The data since Tysabri's return to market shows that PML is NOT necessarily fatal anymore. PML CAN be treated. When caught early, there may be little damage. The key to preventing damage due to PML is VIGILANCE, and those of us on Tysabri are pretty vigilant by now, and so are the neurologists prescribing Tysabri, and the infusion centers administering Tysabri.

As to traditional therapies, who should choose? We get sent home with a pack of info from the drugmakers, and told to come back when we pick a therapy. It's OUR choice. It should BE our choice no matter what. I planned to go on Tysabri and was scheduled for my first infusion when it was pulled from market in 2005. I hadn't taken any other therapy prior to that and the ONLY reason I agreed to do Copaxone was because MY CHOICE was no longer available and Copaxone seemed to be the least obnoxious of the drugs available.

I waited and worked to get Tysabri back on the market, while suffering from relapse after relapse on Copaxone. Copaxone obviously wasn't working for me, so it would be considered inadequate. When Tysabri returned to market, I went on it as soon as I could get on it. I haven't looked back since.

It's my brain. It's my body. I am an intelligent person and I can weigh the risks and benefits using the available information. I would still make the same choice today, to use the most efficacious therapy available to prevent relapses and slow the progression of disability.

Tysabri is prescribed as both first and second line therapy. The FDA clarified that back in 2006. Tysabri is generally recommended for patients who have had an inadequate response to or are unable to tolerate alternate MS therapies. I cannot tolerate losing my brain to this disease, nor can I tolerate drugs marketed to people with MS that, at best, give the patient a 34% efficacy rate.

I haven't had a relapse since I started Tysabri and it's been over two years now. My MRIs are tremendous. Not only do I have no new lesions and no enhancing lesions, many lesions seen previously are reduced in size or gone completely. My vision is back to pre-diagnosis levels, my spasticity and fatigue have been cut to 1/3 or better than where they were before Tysabri. My thinking is clear and I can read a book again without having to re-read every paragraph I previously read. I can retain information again. I'm not dizzy or walking like someone who is intoxicated. I can drive. I can work full time and work more than one job. Time is brain. So far, I'm holding on to mine in what I consider to be the best way that I can.

So, do you have MS? What therapy are you on? How's it working for you?

Hi I'm a newby and need to ask some very basic questions - sorry if my lack of basic knowledge is irksome to some of you more experienced members.
1/ What is PML? (Looked it up in the site med directory to no effect)
2/ What other side effects should I be aware of?
My granddaughter the has been advised by her neurologist to change from Copaxone having previously spent 3 1/2 years on Rebisf. She is very concerned about serious side effects!
Regards
Harryp

Quote:

Originally Posted by Harryp (Post 617926)

Hi Harryp and welcome to Neurotalk! :)

Soory to hear why you are here but kudos to you for your research for your granddaughter.

I'll give you some links for reading and if you have questions come on back and someone will help you find the answers.

1) PML: Progressive multifocal leukoencephalopathy
http://www.nlm.nih.gov/medlineplus/e...cle/000674.htm

2) Other side effects: Everyone's different. Some folks have no side effects and some have a lot of them. The best place to read about side effects is from the patient medication guide. You can find that by going here: http://www.tysabri.com/en_US/tysb/si...I-medguide.pdf

There's a wash out period before starting Tysabri that lasts 2 weeks or more depending on what drugs have been used before Tysabri and how long the neurologist feels the patient might need.

I hope this helps! Feel free to ask whatever you need to know and if someone can answer, they will.

PML Info just became public on FDA site

http://www.fda.gov/Drugs/DrugSafety/.../ucm199872.htm

Table at the bottom breaking out PML rates in the US and Europe.

Quote:

Originally Posted by Grammie 2 3 (Post 616352)

Grammie, I was just at that site and they now have 33 PML cases but the last 2 are unconfirmed. There was a woman in the USA who was listed as having PML after 52 doses....# 24 on the list...... and another woman in France listed as having PML after 53 doses.....# 30 on the list. The most recent unconfirmed cases are listed as having 45 and 46 doses of Ty.

I love my Ty but the more I read about PML the more concerned I am. I didn't get my dose last Friday. I'm putting it off 2 weeks because I'm going to California again for my grandson's b'day and I don't want to worry about the side effects I always get. But, I've never gone 6 weeks between infusions except for last summer when I was ill and couldn't have an infusion. Darn.......I hope I've made the right decision. If it does go ok I will try to continue to get an infusion every 6 weeks instead of every 4 weeks.

Good luck everyone...hugs,
Shayna