My Tysabri Diary...

A very quick thank you to all who have commented recently on my Blog...a special thank you is being sent to my good friend Joyce, we both believe in the power of prayer (either she's better at it than I am, or it's because I can no longer get up from a kneeling position, but when she prays, even E.F. Hutton listens!!! ) Thank you all for your emails, well wishes...and especially your prayers for Monday, I'll post the results of my neuro appt. Monday, 10/2.....ps Joyce...loved the pumpkin! yeeeeeooowzaaahs! lol

(((hugs)))
Love, Lauren

A very proud member of www.MSpatientsforchoice.org/

My Tysabri Diary...

Yaaaaaaaaay! It's about time! Even though Kaiser So. Calif's certified infusion center is about an hour's bus ride away for me (not fun in a w/c, so hopefully soon the Kaiser infusion center that is only 15 mins from me will be TOUCH certified), I'll make the awful trip to P.C. to get my Tysabri asap! Woohoo....my neuro appt is Monday, 10/2, and I just pray she keeps my dx the same and declares me SPMS with relapses, and writes the script for Tysabri...I'm a little nervous about my neuro appt, but not with the infusion of Tysabri, for that, I'll be excited! I'll let everyone know what happens Monday after my neuro appt.

(((hugs)))
Love, Lauren

A very proud member of www.MSpatientsforchoice.org/

My Tysabri Diary... eeeeeeeeeeee!!!!!!! My neuro's secretary just called me...

and told me my neuro wanted to see me (discharge from hospital follow up)...when I asked if she had completed the 'TOUCH' certification training yet as I didn't want to make two trips to see her (I was prev. told mid-oct), her nurse said hold on......when she came back on the line, she said "yes, and she wants to see you asap...now she's booked solid again, but can you come in on 10/2 and she'll see you in between patient appts if you don't mind waiting a bit when you're here?"

I said, "Not at all...of course, I'll be there with bells on my chair!" (I'm thinking, I've waited since 3/1/05 until 6/5/06--plus through 10/2 it will be 19 months without Tysabri...wait a bit in between patient appts...helllllllllooooooo?)

One last hurdle to go: keeping my dx of SPMS with relapses to stay eligible for Tysabri.

(((hugs)))
Love, Lauren


A very proud member of www.MSpatientsforchoice.org/

A few short replies to the comments I've received lately...

For mdmhvonpa, thanks so much. Family does help when in a dire situation such as mine, but unfortunately, my two sisters (that's all I have left), they see me as a burden to them, and that's ok, MS is my problem, not theirs...sad really, their loss though, not mine. As for what your neuro told you about MS, they are completely wrong, dead wrong, and their theory re: relapses couldn't be further from the truth...in general, the damage from the disease is ongoing in the majority of cases (this could be by way of silent lesions forming or intermittent relapses with remitting symptoms after time and usually a short course of steroid treatment, and then gets steadily worse over the years (that's why MS is defined as a chronic and progressive disease)...10-15 years later after the initial relapse and then continuing intermittently during that time...it is in the later years when the disease progresses from the 'inflammatory/relapse' stage - to the demyelinating/permanent stage...which is why I personally believe it's best to start Tysabri therapy asap in order to prevent more relapses and disease progression...maybe you do need to seek a second opinion mdmhvonpa, just a suggestion as I am not a doctor (but I could play one on a soap opera called "As The MS Turns")

for Hillerie.....hang in there girlfriend, you'll get your "Liquid Gold" soon, and I pray your recovery begins shortly thereafter...I believe in Tysabri with all of my being...so go get 'em tiger!

for Penny...in answer to your question...ya gotta laugh with me here or I'll start crying....well, I didn't have a choice really, only one person was available...OMG what a nightmare that turned out to be...hmmm where do I start...she's suppose to be available 24/7 (that is what she is PAID for), so I find out today she's not a certified nurse, but a bookkeeper that injured her major hand and can't do bookkeeping for awhile..Striiiiiiiiike 1! Therefore, she has trouble assisting me with my chair transfers, she has no transportation to get me to and from my dr. appts, can't run to the market/pharmacy, etc., Striiiiiiike 2! She wears a hearing aid as she's deaf in one ear so when I'm calling her 6,7,8 times at the top of my lungs, she can't hear me or she's on the phone (which I told her politely 4 times that was not acceptable-I gave her 4 balls as needing a hearing aid is a disability) BUT when she brought it up for the 5th time, I screamed at her 'THAT IS NOT ACCEPTABLE AT ALL!'..she says, "you don't need to scream at me"...and I replied "YOU JUST SAID YOU'RE DEAF IN ONE EAR AND HARD OF HEARING, AND NOW FOR THE 5TH TIME, THAT'S UNACCEPTABLE! AND I CAN'T KEEP REPEATING MYSELF, THIS IS CAUSING ME TOO MUCH STRESS...I DON'T NEED MORE STRESS JUST GETTING OUT OF THE HOSPITAL!!!" Well, 30 mins later she tells me, "I have to take 2 days off this coming week, I'll find you a replacement, but you'll have to pay her separately"...."ummm, nooooooo, I'm paying you for 24/7 caregiver services, if You need to take off, your fee is paid already, so You pay her!" (THAT should have been Striiiiiiiiiike 3, but being the kind person that I am - plus she thought she had me over a barrel), for the 2nd time today, when I needed assistance from the bathroom to my w/c, and I was screaming for her assistance when she KNEW to stay near..she's outside talking on her cell phone..."sorry, that's it, STRIIIIIKE 3! YOU'RE SOOOOO OUTTA HERE-GONE! - immediately...call your employer and have them send a replacement for tonight." You will NEVER guess what she said......ready??? She says, "Can I use your phone? My cell phone battery is almost dead and I need to call my daughter to come pick me up".........my reply, "Well ain't that a shame, you better talk fast to your employer and daughter on your cell phone 'cause you can't use my phone after the Hell you've put me through today...maybe you should have been working instead of yacking on your cell phone all day with your personal calls!"...so, now I'm left to fend for myself against the e.r. neuro's orders until a replacement shows.....please pray I don't fall until then...tomorrow...time to hit the back up resources phone numbers.......ARGGGGG!...I guess I named my Blog correctly, because this IS "Living With MS"-*I guess when life throws you curve balls, you gotta become a switch hitter! Batter UUppppp???????
(((hugs)))
Love, Lauren

A very proud member of www.MSpatientsforchoice.org/

Just a short update tonight.....

I'm truly overwhelmed at each of your concerns for me. I just got home tonight and online after being admitted to the hospital for 4 days. My choices given to me by the attending neuro, after filling me with 3 days of IV Solumedrol, were 1) hire a caregiver 24/7 to assist you with your chair transfers (which is what landed me in the hospital Wednesday night after I took 2 bad falls - as I can no longer stand) and help you with your daily chores, or 2) you have to go to a nursing home for the next 6 weeks.

Well, option #2 was out of the question, so I hired a caregiver to live with me (I'm sooooooooo NOT happy about that because now I have no privacy to speak of, plus it's costing me a small fortune as Kaiser Sr. Advantage doesn't cover live-in care, etc.) BUT it's better than the alternative.

Now do all of you understand the phrase "TIME IS BRAIN"??? All this time without Tysabri, MS is creating MORE lesions on my brain, and this time, it's taken away my ability to even stand. I don't even know if I'll still be eligible for it now, and the neuros in So. Calif Kaiser won't be "TOUCH" Certified until mid-October.

I can't type long as this is my first night home, and I'm not feeling all that great...more disappointed than anyone, at the system.

Thank you one and all for your concern. I have a TON of emails to answer, and I probably won't get to half, but once again, thank you all. I'm not giving up, and neither should any of you!

(((hugs)))
Love, Lauren

A very proud member of www.MSpatientsforchoice.org/

Tysabri video available for viewing online!

If you are wondering exactly how Tysabri works, you need to see this "very easy to understand" 3 minute video clip. I highly recommend it...turn up the volume on your computer and go to: http://www.mspatientsforchoice.org/videocenter.htm and then click How Tysabri Works.

By viewing it, you will be smarter than the average MS patient, and by far, smarter than 1/2 the general population!

Lauren :)

A very proud member of www.mspatientsforchoice.org/

Exciting Tysabri News!

Atlanta, GA The MSCA has started infusing MS patients with Tysabri! See: TYSABRI NOW BEING ADMINISTERED AT MULTIPLE SCLEROSIS CENTER OF ATLANTA ATLANTA – The Multiple Sclerosis Center of Atlanta (MSCA) has ...

What caught my eye was that the article presented the true facts about Tysabri, including the true facts and small risks of PML (rare) "...After an extensive safety study in which no further cases of PML were found, the FDA approved the re-release of the medication in July 2006...In its early stages of development, the MSCA was the only site in Georgia to be involved in the pivotal international clinical trials for TYSABRI, and the center has more than three years of experience in managing patients on TYSABRI therapy.

Research suggests the drug works by preventing immune cells from migrating from the bloodstream into the brain where they can cause inflammation and potentially damage nerve fibers and their insulation. Studies found that TYSABRI reduced the formation of new, enhancing lesions of MS by 92 percent and reduced the number of MS attacks by 68 percent....

The MSCA provides this additional treatment option to patients with relapsing forms of MS. The drug is administered intravenously once every four weeks and studies show that the medication initially begins working after the first dose, and is even more effective after the second dose...". [emphasis added in bold].

Additionally, please note the following with regard to www.MSpatientsforchoice.org/ and MS Active Source:

MSPatientsForChoice has been revamped and updated

The new website format for http://www.mspatientsforchoice.org/ is up, and it looks great!

-- They now have individual state maps showing neurologists and infusion centers, and will be working to identify those that have completed their TOUCH enrollment.

-- There is an animation that shows how Tysabri works

-- There is information on getting financial assistance for Tysabri infusions.

To find Tysabri-enrolled neurologists and infusion centers near you, call:MSActiveSource at 1-800-456-2255 and give them your ZIP Code. They should be able to identify two or three options closest to you. If the person at MSActiveSource is unable to do so, please ask for a supervisor, and then email them at admin@mspatientsforchoice.org with a report of what you found (including the names and telephone numbers of the neurologists and infusion centers so that they can build our own data base, and any problems you may have had in accessing the data).

Please encourage your friends to do the same, including reporting the information to us at: admin@mspatientsforchoice.org. In time, they should have a reasonably good data base of TOUCH-enrolled neurologists and infusion centers.

To Penny and Zeb: Thank you for your comments. Know that we will all get through this together. Heck, my neuro at Kaiser So. Calif. hasn't even completed the TOUCH training program yet, and isn't expected to until mid-October!

Best wishes to you both on your upcoming infusions...you will both do just fine! Raising my Tysabrini drink to you soon (Clink Clink)
((((hugs)))) Love, Lauren :)

Financial Assistance For Tysabri Infusions

MS ActiveSource and MS Patients For Choice

In the next week or so, people can call MS ActiveSource at 1-800-456-2255, give them a ZIP Code, and they will be able to provide contact information for a couple of nearby TOUCH-enrolled neurologists and infusion centers. I was was advised that because everything takes place in a very controlled environment for Tysabri, IT programs need to be written and checked, SOPs need to be developed and implemented, and training needs to take place. This takes some time. However, please rest assured the team is working on it actively to assure that this service is available to patients interested in locating a physician.

At present, www.MSpatientsforChoice.org/ does have a process to help identify infusion sites for patients who have been enrolled. The TOUCH enrollment process is proceeding, with approximately 20 sites being enrolled every business day, and there are Google links that will show the precise location of each infusion site for every part of the United States. Thank you to all who are assisting with this effort.

Assistance to MS Patients with Unduly Burdensome Insurance Co-Payments

Some insurers are requiring co-payments of as much as ten percent (10%) of the total cost of Tysabri and the infusion, approximately $300 or so per infusion (about $4,000 annually for the typical 13 infusions). Most co-payments are lower. The website is working with Biogen in an effort to reduce these co-payments as much as possible, and programs have been set up to assist MS patients who are unable to afford large co-payments. Their initial goal is that the Tysabri co-payments should be no higher, as a percentage of the total cost, than for the CRABs.

If you find your co-payment unduly burdensome after you have been enrolled in the TOUCH program and have been approved for insurance reimbursement, ask your case manager at MS ActiveSource (1-800-456-2255) to direct you to the various assistance programs that have been set up. If you have problems, contact www.MSPatientsForChoice.Org at admin@mspatientsforchoice.org and they will do what they can to provide assistance. They are continuing to consider converting MS Patients For Choice to a 501(c)(3) nonprofit organization (so that donations are tax deductible to the extent allowed under IRS laws and regulations -- consult your tax advisor), and then do some fund raising to assist MS patients with their co-payments.

In the interim, here is some information for MS patients on getting financial assistance with the expense of Tysabri, and for those who want to make a tax deductible donation to assist MS patients. For MS patients, you must first qualify for Tysabri and get enrolled in the TOUCH program through a TOUCH-enrolled neurologist. If you do not have a TOUCH-enrolled neurologist, within the next few weeks Biogen's MS ActiveSource program (1-800-456-2255) will be set up to give you several nearby TOUCH-enrolled neurologists organized by ZIP Code.

Once you have been examined by a TOUCH-enrolled neurologist, obtained your required baseline MRI and have been enrolled in the TOUCH program, you will be assigned a Case Manager by Biogen through their MS ActiveSource program. The Case Manager will assist you and your neurologist with insurance reimbursement issues, including insurance co-payment assistance or with getting free Tysabri if you do not have insurance.

Co-payment Assistance:

While MS Patients For Choice is getting itself organized as a 501(c)(3), there is an existing organization that can assist MS patients who need assistance with Tysabri co-payments, the National Organization for Rare Diseases. Here is the contact information:

NORD MS Premium /Co-Payment Assistance Program
Conditions:Multiple SclerosisContact:1-800-634-7207 NORD MS

Medicare Co-Payment Assistance Program
Conditions:Multiple Sclerosis (MS)Contact:1-866-924-0100

When in doubt, work with your Case Manager at MS ActiveSource to pursue this route.

How Others Can Help:

NORD seeks to establish funds for specific drug co-payments for privately insured patients. However, it is against the law for such a fund to be set up specifically earmarked for Tysabri for Medicare and Medicaid patients, and most drug companies are reluctant to contribute to a general fund for MS patients as those funds can be used for the competitors' drugs (who may not be making similar contributions). However, individuals can make contributions that are earmarked for co-payment assistance for a specific drug, so here is a link to the NORD website to make such a tax deductible contribution: http://www.rarediseases.org/helping/donate.

Best wishes always,
Lauren