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:



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

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

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

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 :)

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?

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?

i get that too (the itching). wish i could tell you the answer. i dont think it reason enough to stop personally, i would share this with your dr or the infusion clinic for sure!

Daisy, since I'm not a dr I can only tell you my experiences with Valium....which is in the same family of meds as Klonopin. Prior to having an MRI I take 10mg. of Valium. It makes me feel a little loopy and off balance but I prefer that to feeling like I want to scream, having my heart pounding so hard it feels like it will burst and feeling as if I might pass out. Later on the Valium makes me sleepy but I don't sleep through the MRI because I'm still a bit nervous but I'm able to handle it with the Valium.

I have a friend who has panic attacks on a regular basis. She takes something for it that is similar to Klonopin and Valium. I know it took her over a month of taking the med daily before the side effects wore off and she felt comfortable driving a car. I think she takes 2 tablets a day.

When I first began Ty I was nervous about every little thing. I didn't even notice that I was doing better because I was so focused on all the side effects they told me to watch out for. It was my husband who noticed that I began to walk a bit better. I was using a walker in the house most of the time but, other times I would hobble a bit from chair to chair. I had stopped using a wheelchair in the house. He realized that I was able to walk a straight line instead of weaving :)

hugs,
Shayna

Is it possible that it is nerves or an allergic reaction to something else that is causing this?
I would be concerned if it happened during infusion or within 48 hours of infusion. None of it sounds like a reaction to Tysabri since it's been a few weeks since your infusion, but the best person to ask would be your physician.

I questioned myself about every little twitch when I started Tysabri, but decided that it was probably because I had heard too much testimony about the concerns and fears about what might happen with Tysabri, since it was so new and not a lot of people understood how it worked. I resolved to relax, sit back and just be aware of what was happening and write it down and then when I read over what I had written a few days later I would realize that it had passed without a problem. The things that did not pass were reported to my doctor and we dealt with them at my regular appointment every three months.

I hope things get better for you. Tysabri is not for everyone and some people cannot tolerate it as well as others. It doesn't mean you are a failure, it just means it didn't work for you.

Some of us couldn't take the interferons, some of us couldn't take copaxone, some have bad reactions to steroids, and for some, none of the meds that were available worked for them. We are lucky to have choices now, because less than 25 years ago there were no drugs to choose from, just drugs to try and treat the symptoms. Now we have the ABCRs and Gilenia and more coming out soon. Scientists are working on stem cell treatments and investigating venous insufficiency and other things, identifying the genes that appear to relate to MS and tying in what they have learned while working on other diseases that may help people with MS.

I still believe that there will be an understanding about the whats and whys of MS in my lifetime, as well as a way to stop it. :)

Today I had # 50.

It was a quiet day, no problems, no concerns...

except that the infusion center moved since last month and they forgot to tell me. :confused:

Fortunately I knew where they were going, so they didn't succeed in hiding from me.:D

River, you are going to keep getting tested, right?

Congrats on 4 good yrs on TY.:)

hey river, are you still on every 4 weeks? many i speak with at my infusion center are cutting back to 6 and 8 week intervals after a couple years

Tysabri #54
 

Hello All. I am new here and I am looking for all you fellow Tysabri users. I live in Germany (husband was transferred for work 20 months ago) so I am looking for some English support. Do not know many people that have been on Tysabri as long as I have. I love it, no reactions, and I have been stable for over 4 years.
yesteray was #54 and it took 6 times to find a vein. It freaked me out. I already have a hard time when I have to go to the hospital to test for blood. They always have to go to a few veins to get more than one vial to test from me.
My doctor here said I should start looking into Fingolimod the oral medication since I am having issues. So again stressing me out! Change medicine in another country.
The doctor that I go to only does the vein in the arms, no the hand. On the 6th attempt they sent me to a different practice to have the doctor put the needle in my hand and then I walked back to my doctors office and had my medicine.
How long can we safely stay on Tysabri? So many questions!!!
Thanks!!
:thud:

I got a call from my neuro yesterday.

I tested positive for the JC Virus.

Also, my neuro monitors CD4 T-cell level on all his Tysabri patients. My baseline was high....over 2000 (range 490-1700).

Anyone else have their CD4 cells monitored??

Here is a report by Elsevier about Neuroinflammation in MS: "Autoantibodies and autoreactive T cells against these myelin antigens have been detected in MS patients."

It said there was a type of CD4 T-helper cell that react against myelin.

What I read, is that there are some studies being done to correlate these CD4 cells to MS and other auto-immune disorders.

Source: http://www.direct-ms.org/pdf/Immunol...%2003%2006.pdf

So sorry Daisygirl.. I know what I'd do..:eek:

do you have any problems with finding a good vein any more? I have had 54, and I am. Have you thought how long you will be on Tysabri?
Thanks
Kara

I saw my neurologist today and found out that FINALLY my clinic is testing for the JC virus antibody as part of the Stratify trial. Yeah!! It took them forever to run through all of the paperwork because they are affiliated with a medical school and have to abide by more stringent research protocols. They started testing yesterday so I was patient #12 out of a future 500. I hope that 12 is my lucky number. If I am negative then I will stay on Tysabri. If I am positive he wants me to switch to something else since I am having #27 next week and it's been almost 3 years since I've been on the drug. The only other option for me is Gilenya.

I asked about measuring CD4 cells. He said that some of the studies regarding measuring counts of CD4 cells, CD8 cells, and the ratio between the two and their connection to immune suppression and the JC virus were done at the medical school here. He felt that measuring these counts can't provide any useful information that will help those on Tysabri. He does, however, feel more positive about the JC antibody test after talking with Biogen and the researchers (as opposed to the last time I saw him).

Anyhow, keep your fingers crossed because I want to stay on Tysabri!! :D I get the results in 4 weeks.

PS: They are running spinal tap research tests and looking for people to participate in their studies. They will pay you $200 for every spinal tap you give them. Hmmmm.....is it worth it? ;)

good luck natalie! also, $200 s not nearly enough to undergo a spinal tap imo. $2000 maybe... :mad:

It's good to hear that you are finally able to get the antibody test Natalie. Here's hoping that you are negative!

As far as having an LP for $200.00, no thanks! My experience with the only one I ever had put me off them for the remainder of my life if I have any choice in the matter!

Hope all is well with you!

I get tested again next month, Sal. Hopefully the next test comes back negative too. I am still the only patient with a negative result out of all the patients tested in my neuro's practice.

Mike, I am sticking with the every 4 weeks as prescribed. It's worked for me so far and I don't want to mess with what works, since I haven't had any problems.

Hi Kara and welcome to our Tysabri forum!
I hear you on the sticks! I give the nurses two shots at it and then a new one comes and does the stick.

Are your issues only with them hitting the vein or are you having other problems with Tysabri? I believe you can have a port inserted if needed. That way they only have one target! ;)

Have you had the test for the JC antibody yet? It's said that if you are negative to exposure to the JC virus, that you can stay on Tysabri indefinitely if you are doing well. That is what I am doing for now since I haven't had any problems or relapses since I started, and I tested negative for exposure to JC. I ask about the test because I am not sure if they are doing it in Germany, they are doing it here in the USA but I can't remember whether it's happening in other countries yet.


I am at 50 infusions now, and have only missed one. I had an emergency appendectomy and didn't want to throw Tysabri on top of the mix of drugs I was on since the infusion was due two days after the operation. I resumed infusions the next month with no problems.



Hi Daisy! Sorry to hear that your results were positive. It's got to be hard to have to start over with treatment decisions again.

My doc doesn't check CD4/CD8 counts. It's his opinion that general health and wellbeing, along with relapse rate and progression of disability are better predictors of how patients are doing, since we already know that CD4/CD8 counts are affected by Tysabri. He did check one time at my request and I was within normal range when tested.

Let us know how you are doing and what you decide to do. We're here and we are listening if you need to talk. :hug:

Natalie, I had 1 spinal tap and I hope I never have to have another. However, if my family was hungry and I didn't have the money to buy food for them I would consider a LP for $200.

I'm keeping my fingers crossed for you. I hope you test negative!!!!!!!!

Daisy, I'm so sorry!!!!!!!!!!!!!!!!!!!!! This is going to be a hard decision for you to make :( My neuro doesn't do the CD4 test. I asked about it once and she said that the test results would be affected by the fact that I'm on Ty every 4 weeks.

Kara, welcome to the group. Infusion #43 is coming up at the end of this week. They consider me a "hard stick". My feeling is that if I find someone who can hit my vein that is the person I request. I think I have the right to do that and I wouldn't go off of Ty because it was inconvenient for the infusion center. Is your dr really that strongly against having another dr put the needle in your hand???? Perhaps if you talk to him about it he will see that it is easier for you and this is the medication that you want. Good luck!!!!!!!!!!!!

I have my infusions every 4 weeks. I've tried going longer and it just didn't work for me. I need Ty every 28 days.

RW, how long since you had the JCV test???? I'm curious because I had mine just after Thanksgiving and I have been told I will be tested once a year. I'm the only one of my neuro's patients on Ty who tested negative. But, most have decided to continue with Ty because it has helped them so much.

BTW, I still have the sinus and double ear infection. But, at least I'm getting my Ty :)

hugs to all,
Shayna

Kara
 

Hi Kara, sorry for your troubles :hug:
I will have #54 Friday. Some nurses consider me a very hard stick others get me the first time. I have learned to drink fluids, keep my arms and hands (sorry they won't use your hands :() warm and tell them my veins are deep and rolling (I learned this a couple years ago from a nurse).

As for how long can we safely stay on Ty. I hope I will be on it until I no longer need to be on it.. a neuro at the RMmsC (Colorado) said that when you reach a certain age (65) for some ms stops or that something better has come along. I monitor my status-pretty vigilante... I pay attention to how I am keeping in mind signs of pml.

Tysabri has been/is a blessing for me !!!!!

Best wishes
Linda

Shayna, I was tested in Sept 2010. I am pretty sure the doc said another test in 6 months, and that will be at this month's appointment. It should have been last month but my appointment was rescheduled.

Sorry to hear that you are still dealing with the sinus and ear garbage! Get better soon!

I had #27 today. It was nice -- had a room entirely to myself which I like very much. I can nap, talk on the phone, read, snack etc. and not have to deal with anyone else. And this time I was an easy stick. The last couple of times the rolling veins have caused some aborted attempts. This time post-infusion I'm not feeling perky -- nausea, headache, low grade fever, general blahs. But I expect by Sun. I will be up and going!

Now if only my JCV antibody text comes back negative. I should know in 2 weeks. I really hope this isn't the last Tysabri or I will be so so sad. :(

i had infusion #4 yesterday, tired me out, but otherwise feel ok. had problems with the stick again, i told the nurse where the guy who draws blood always gets it but she proceeded to stick me everywhere but, until she decided to believe me and got it easily. she apologized and said next time she will listen to me...

feeling tied today too, its cold and rainy in mesa az :o

#54 etc
 

Hey Clarkstar, I just had #54 yesterday at Banner Desert. My gal got me on the first stick :D I hydrated and wore a jacket so my arms stayed warm-I do what I can to help.
I will be going back to CO shortly and not coming back to AZ as my life is changing. I have lived in AJ, winter visitor.
I hope you do great on Tysabri
good luck
Linda

New Information on Ty Label re pml
 

Sorry I didn't pay closer attention to give you the site :( I actually thought info would've already been posted here.
Between 25-36 infusions odds are 1.5/1000
Between 37-48 infusions odds are .9/1000
risk is greater if you had been on an immunosuppressant

Thanks Linda! I hadn't had a chance to post this info yet, I've been doing 12 hour shifts and trying to fix my stupid laptop...:mad:

Biogen and Elan were approved for a label change for Tysabri.

"The included data shows the risk of getting the infection is 0.3 patients per 1,000 when using the drug for less than two years. That rate rises when using the drug for two to three years, to 1.5 cases, but notably drops to 0.9 cases for the period of three to four years. The data is current as of January and Biogen said the label will be updated as needed."

http://online.wsj.com/article/BT-CO-...07-712561.html

The article linked to also addresses the test for antibodies and the plan to add it to the label.

AAN conference
 

The AAN - American Academy of Neurology - had their 2011 conference on Tysabri. It states that if you have 3 risk factors, which are being on Ty longer than 2 years, taken an immunosuppressant before Ty and being jc virus positive your odds of pml are 1/100.

I have 2 of those and would like to know what those odds are.

I hate that the med I love has a risk factor that worries me :(
Linda

Do they consider previous use of short-term SoluMedrol to be immunosuppressive?

"In addition, patients treated with an immunosuppressant (IS) prior to receiving TYSABRI have an increased risk of PML;
IS use includes agents such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate and
cladribine, rituximab, and chemotherapy (not otherwise specified)."

Short term SoluMedrol not listed as IS

Just found out today that I am JC Virus antibody positive. Like Grammie, I've been on Tysabri for over two years (4 years, 3 months). Guess I'll have to think about it and confer with my Neuro on the options.

Chris

I had # 51 yesterday. No problems, no concerns, usual infusion day.
Next month will be 4 years for me.

Hey Vic, just read this-took me awhile ;)
How are you and your DW ? Hope well and doing well !!!
On another site I am lindaincolorado :)
Linda

:trampoline: :trampoline: :trampoline:

My doctor just called and I am negative for the JC virus antibody! Yeah!!!!! I get to stay on Tysabri! :D

Thank god and what a relief because I was not looking forward to trying Gilenya.