NeuroTalk Support Groups - Tysabri Check In, Support and Information Part Three

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Check In, Support and Information Part Three (https://www.neurotalk.org/multiple-sclerosis/142931-tysabri-check-support-information.html)

Linda,
I'm happy to hear that you found information about the Medigap insurance.

When the man had to pick a Medicare plan, we went to the local senior center. They had a counselor who had all the info in front of them and the person was able to help him choose his plan based on his drugs. They also explained all the options as far as Medigap insurance, income limits for eligibility for extra help, low cost drugs for seniors and disabled people and other programs that he might be eligible for.

It's a good idea to remind people that there are programs that can help folks make their way through the muddiness that is Medicare/Medicaid/DEL/QMB/etc. Even your pharmacist is supposed to be able to help, but for us, that senior counselor was the key.

Anyone who needs help with the Medicare program should check to see if there is someone at the senior center who can help explain all the options, whether you are a senior or on disability. It's a godsend for those who might have cognitive problems, to have everything in front of them on paper, and someone who can explain it all and answer any questions.

7 new PML cases among Tysabri patients, 1 new death

From NASDAQ, March 18, 2011:

Quote:

Quote:

Biogen Reports 7 More Infections In Tysabri Patients

By Thomas Gryta

Of DOW JONES NEWSWIRES

NEW YORK -(Dow Jones)- Biogen Idec Inc. reported seven more cases of a rare brain infection among multiple-sclerosis patients taking Tysabri, sold with Elan Corp. , bringing the total number of affected patients to 102 as of March 4.

The Weston, Mass., biotech company reported that one more of those patients has died, bringing total deaths to 21. The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.

The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease.

Biogen recently halted enrollment in a major clinical trial aimed at testing the earlier use of Tysabri, citing a slower-than-expected pace of finding participants and the desire to devote resources toward "risk stratification" efforts for the drug.

Biogen is developing a blood test that may better determine the chances of patients contracting PML. The test recently received CE Mark approval in Europe and the companies are conducting large studies of its effectiveness.

Regulators have said that they monitor cases of PML as they occur and have concluded that the benefits of the medicine outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006--because of its effectiveness--with a strict access plan that monitors patients.

The overall global PML rate is now at 1.23 per 1,000 patients. A Biogen spokeswoman said the current PML figure is "still generally within what we saw in clinical trials."

Of the total PML cases, 42 were in the U.S., 55 were in the European Union and five in other areas.

The risk of the infection generally increases with the number of monthly infusions that a patient receives, but that rate appears to drop after 30 months. Biogen is studying this drop and warns there is limited information from patients on the drug longer than 36 months.

The most-recent data translate to a rate of 1.87 cases per 1,000 patients on the drug for a year or longer, rising to 2.41 per 1,000 for those on the drug for two years or longer, and dropping to 1.4 for more than three years.

Looked at another way, the rate is about 1.68 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.44 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com

The article can be seen here.

According to the chefarztfrau Website, which documents the cases as they occur based on information from "internal sources," what is known about the new cases is:

#96 - USA - female - 22 doses of Tysabri

#97 - Luxembourg - female - 35 months on Tysabri

#98 - Italy - female - 33 months

#99 - USA - male - 51 doses

#100 - USA - female - 22 doses

#101 - USA - female - 34 doses

#102 - Hungary - female - 37 doses

Quote:

Originally Posted by daisy.girl (Post 751946)

I called my neuro, and was told that it sounded like anxiety as a side effect of the Tysabri. I have never had anxiety before. They called in Klonopin. I hope it helps.....but at this point I don't know if I should continue with the Tysabri??

Daisy, do you feel like the Ty is helping you???????????? Does your neuro feel like it is helping or wants to try a few more infusions??????? Klonopin is in the same family of meds as Valium. I take Valium before I have an MRI and have not had any problems with it...the Valium. Does your neuro want you to take the Klonopin daily or just prior to you infusions?????

sending hugs your way:hug::hug::hug:
Shayna

I had infusion #42 two weeks ago at my old infusion center. My next infusion will be in my neuro's office. I have mixed feelings about it since she's in a practice by herself and she has hired a part-time infusion nurse. I'm not sure what they will do when they go on vacation. My neuro only works Monday-Thursday and takes several weeks off in December. I'll see how it works out. If I'm not happy with the infusion nurse or have difficulty scheduling an infusion due to their strange hours I'll go back to the old infusion center which is actually an oncology infusion/chemo room.

I still have the double ear infection. These darn sinus and ear infections won't go away. At least they don't interfere with my infusions :)

I'm finding that as I get older I need to rely on Provigil more than I did in the past. It's the only thing that keeps me alert when I want to drive or go out and see people. Perhaps it's the combination of age and m.s. I've had m.s. for so long and just took it for granted until my exacerbation in 2003. Now I don't take anything for granted!!!!!!!!!!!!!!!!!!!!!!!! And, I love my Ty :)

hugs,
Shayna

Quote:

Originally Posted by Grammie 2 3 (Post 753197)

I have learned that with a medigap supplemental insurance I can get the same coverage that I have now-just will need to choose which one and pay the premium. I now understand part D of Medicare better and the same will apply as with the supplemental insurance.

I am planning on going to the Rocky Mountain ms Center in Denver, CO for a neurologist when I can get home to CO.

Linda

Linda, I'm so glad things are beginning to work out for you!!!!!!!!!!!!!! At least this is one less thing for you to worry about. A divorce can be difficult enough :(

lot of hugs :hug::hug::hug:

Shayna

Quote:

Originally Posted by shayna (Post 754707)

I have only had 2 infusions, so no, I do not feel like it has helped at all, in fact I feel worse.
They only gave me (30) Klonopin, and directions say I can take up to 3 a day. I only took one a day, for a few days, they made me feel very loopy.
I guess I will have to wait for infusion 3 to see if I get the same feeling, then I will know it is the TY. It concerns me a bit, because, I was dizzy and off balance, and my heart was racing, as well as feeling nausea.

Thanks for asking :)

Quote:

Originally Posted by daisy.girl (Post 751646)

I just had my second infusion today, and both times, I get this dizzy, off balance feeling, hard to hold your head up feeling; and a feeling of shaking on the inside, like some kind of internal tremor.

Has anyone had anything at all like this??

shortly after my second infusion, my sense of balance took a hit. i stumble a lot now. :hug:

Quote:

Originally Posted by clarkstar (Post 755176)

shortly after my second infusion, my sense of balance took a hit. i stumble a lot now. :hug:

How many infusions have you had now?

Quote:

Originally Posted by daisy.girl (Post 755191)

How many infusions have you had now?

had my 3rd on the 11th

I have yet another question....Tysabri is so new to me. I have only had 2 infusions, one on Feb 7th and my second on March 9th.

Yesterday, I began itching randoming all over my body (not severely), head, neck, legs, etc...and this morning, I am beginning to get a cold sore on my upper lip.

Has it been too long since my infusion to have a reaction? Would this be a reason to stop Tysabri?