I saw my neuro today, and he wants me to start Tysabri. I had 5 additional brain lesions in a 9 month time span.

Can anyone please tell me what if any co-pay they pay with the TY infusions? is there a assistance program? Also, can you tell me what to expect during and after my infusion, and how long it takes?

I am anemic and have low B12 and low Vit D......does any of this matter with the Ty infusions?

good luck eddie, i hope to hear great things about the oral meds :)

i am starting on tysabri within the next couple week. i forgot to ask when i was at barrow last week about the jc virus test but i caled and someone called me back and siad i didnt have it. although i'm not sure she knew what she was talking about. but oh well, wish me luck :/

Thanks River. I get blood drawn Before they start Ty drip. My neuro said same thing (Ty keeps white cells from crossing bbb thats why they can be high) well if so why am i losing feeling & gaining spasmsona daily basis! Copaxone then Novantrone or Gilenya is my next route.

Daisy - 500mcg b12 is tiny pill i take every day and my level is top of range. D is easy to take too. Why arent you taking them?

Clark - after they start the i.v. lock thing, have them draw a tube for a baseline CBC.

I do take Vit D3 .....and B12 injections. But my levels remain low. My ferritin (iron stores) are at 13.....that is low end also. My RBC is low too 3.7.

What about the Ty infusions? how long do they take? any side effects?

Hi Daisy and welcome to our Tysabri forum!
Your first question is hard to answer because everyone has a different insurance plan. The Tysabri program used to investigate your insurance plan and let you know approximately what you would have to pay, if anything. I am not sure what they do now, but someone who has started recently should be able to answer that better than I can.

In addition, everyone goes to a different kind of infusion center. Some are private, some are hospital based and some are physicians office based. If it is hospital based your insurance should cover it under hospital benefits and you have to read your plan and find out what they cover(ie: 80%, 100% etc.) Whatever they don't cover is your responsibility. If it is physicians office based it's whatever your plan covers for office visits, and if it a private infusion center, it's based on whatever your insurance plan will pay for that.

Biogen cannot help you with infusion costs, only with the cost of the drug, but your infusion center may have a program that helps with cost of infusion. If it is hospital based, you may qualify for a reduced rate based on your income.

Vit. D and B 12-
I had low Vit. D levels too,I took 5000 units D3 a day for a year and then reduced it to 4000. My levels are high normal now, and they stay there. I don't have low B12, but there are a lot of folks out on the regular forum that can help figure that out with you. Neither of those matter when it comes to infusion, just general health.

I have low iron levels and take an iron pill every day. I will find out if it helped at my next appt. and if not the doc will be increasing it or changing it to slo-fe for better absorption. I am also increasing red meats, dark green leafy veggies and other iron rich foods and cooking in cast iron pans a lot more than I was doing, all in hopes that I can increase the iron levels without the added expense of a prescription supplement. The increase in iron should help increase red blood cells too.

Tysabri infusions take 2-3 hours. You go in, they ask you a few questions, you get a brochure, they hook you up and you get the infusion for an hour. Every infusion center is different but they all are supposed to follow the protocol of an hour for infusion, an hour of observation to watch for adverse side effects, asking the questions prior to infusion and giving you the brochure.

Some people have some side effects. Some do benadryl before infusion, some people are tired after infusion. Some have no problems at all.

Best thing to do is make sure you are hydrated before your infusion, drink LOTS of water so they can find a vein easily, eat before you go, bring something to keep busy with and RELAX.

My infusion takes 3 hours total and I use it for my monthly break! I'm always at 100 miles an hour in my life and the infusion makes me slow down and just sit. I read, watch TV, have a snack, a hot drink, and just chill. It's almost my only "me" time during the month and I take advantage of it! I used to be raring to get out after infusion but my infusion center refuses to let me go before my time is up so I have learned to deal with it...:rolleyes: (after 47 infusions!)

Hope all goes well with you! Let us know how it goes! :grouphug:

riverwild.....thank you so much for all the helpful information. :)

i'll try to remember that eddie. did you mean wbc count or what is cbc?

Hey!
I forgot to report!
I had # 47 last Thursday and it was as usual, no problems, no concerns.

Noted that the size of the BOX that the vial comes in has doubled. The vial and the info tissue that is folded up in the box are exactly the same, but there's a huge box now!

I save them for info and tracking purposes, and the first thing I did after the pharmacist dropped off the mixed bag of solution and the vial and box, was tear it open looking for my Cracker Jack type prize! :p

(i really wanted a whistle! :Grin-Nod: )

I know this is an up thread and it should be, but I know you will pray for Angela, who was put in John Hopkin for a new experimental drug treatment, for PML.

I'm praying it works and she gets better.:smileypray:

Her orig PML video....
http://www.youtube.com/watch?v=X4aOG2UJDFA

I was looking at the chefarzfrau site. I've had a question about a couple of the pml cases statistics and decided to throw it out to see if anyone has an answer. There are 2 cases in the U.S. both July 2010, one had 57 infusions the other 59. Tysabri was put back on the market July 2006, getting an infusion every 4 weeks would put the most infusions at 52-53 at 7/2010. If they had been in the trial they would've had many more infusions. So... I am confused :confused:

Thanks
Linda

Sally, I watched the video; Angela is talking about plasmapherisis (sp ?). Is there another video where she talks about an experimental drug treatment ?
Thanks
Linda

I go for 1yr on Ty MRI tomorrow. I'll add them to my album here in a couple days. By the amount of sensory i've lost past 12 months, brain's gonna look like swiss cheeze. Curious to see how big the north star in my avatar got.

That was the first PML tape, there is also an old tape from 2009 about her doing well at 9mos on TY...then in Oct, 2010 her tape, in the hosp, with PML.

She was just put in John Hopkins last Fri, for experimental treatment and there is no new tape, yet. I'm hoping for a tape showing she is better..please, God.

Angela responding to CMX001
 

Another Tysabri PML patient responding to CMX001

http://www.facebook.com/pages/Flower...d=154192398822

CMX001 still investigational – see link below

http://www.chimerix-inc.com/therapeu...ategory/cmx001

Thanks so much for the update on Angela. I hope her improvement continues.:)

Also thanks for the link on the new anti viral, that seems to be helping her.

:hug:

So I got MRI'd today, play the cd and they didn't put all the series on disc! Tomorrow I have to go back and have them burn another cd. However what they did put to compare with 2010 MRI shows smaller lesion then last yrs so at the moment, im shocked. I hope I see more on other series tomorrow because im getting off Ty (its a done deal) and if it worked i'll be screwed but worse yet - ive lost so much sensory function since last MRI how could brain and stem look better?
We'll see tomorrow.

I just finish watching the video from Angela and read the facebook update. To be quite honest, right now I am scared to begin Tysabri. I know the risks, but somehow watching a real person going through it, is so different than reading about a possible serious side effect.

I don't know what to do.....

It is known that the number of lesions and their appearance does not often correlate with the symptoms of an MS patient. The trial data for these drugs hang their hat most of the time on these lesion numbers. But the location of the lesions is more important and just a few can cause a lot of problems. Lesions can come and go so how a patient feels and their actual symptoms is a far better indicator of how a particular medication is working.

Harry

Confused by your logic Harry. Lesions may or may not cause problems based on location. Clearly the logic would be fewer lesions would lead to less chance of being in a location the could result in symptoms. Last time I checked, how patients felt was a pretty subjective measure especially in a disease like MS - my daily fluctuations in how I feel, get around are pretty large.

Chris

The copy they made today works. Reading them now, I see the huge one seen in avatar shrunk maybe 1/3, however I see more, and more white edges around parts I have no idea what they're called. When I take the screenshots, I'll post them maybe tomorrow. March 2010 scan - started Ty Dec 2009. Jan 2011 scan's after xx infusions.

The amount of sensory i've lost between scans is terrible.

edit - But if I didn't take Ty or C, i'd be much worse so it surely helped. No shots for a yr at least.

edit again - actually so far it looks like there are fewer lesions 2011 vs 2010. I'm sure i'll find the spot thats worse. At least i hope.

Chris,

You are right in saying that lesions may or may not cause problems based on location but having only a couple of lesions in a more critical area of the brain can cause far more problems for the patient than having several in another area. A number of years ago they also found that by testing control patients, in this case university students, they discovered that lesions can come a go on a random basis without causing any problems at all.

What I'm saying is that MS patients have to look at more than just how many lesions appear on their MRI's to determine how they are doing with their MS. A patient with just a couple of lesions can really be struggling with many symptoms while another with several lesions on the MRI can be symptom free and feel "fine".

The most accurate measurement of how the patient is doing is to look at the symptoms. While "feeling fine" can be subjective, I can say that a MS patient who is really struggling with a lot of symptoms is feeling anything but "fine".

Harry

this is such a catch 22.....doctors have to have an objective way to monitor progression. As unreliable as it may be, it seems that an increase in MRI lesions is how most neuros measure progression. As well as the drug companies.....during clinical trials, the MRI lesion load is how they determine if a MS drug is effective.

Harry is right. I studied my mri for 2hrs last night and it looks BETTER then last years however i've lost sensory in most of my left arm, hand, some of neck, face, gums, lips, increased spasms/jolts/twitches.

Will study spinal cord next but at quick glance, it's the same.

"somatotopic organization of the cerebrum" pictures aren't helping me. Know any good sites that pinpoint lesion loacation/motor/sensory?

Not wanting to turn this thread into a "lesion" debate, I will make one last comment about your statement.

Measuring MS progression by lesion count is not accurate. Disease progression is measured by the EDSS scale which takes into account the patient's symptoms and physical abilities. Some docs like to use the lesion count but this has come from the drug trial data which the companies try and use to show their medication is having an effect on the disease.

Yes a patient can have many active lesions and have disease progression but the patient can have few or no active lesions and the MS will progress.

My wife (passed away 2007) didn't have any active lesions in her brain for a number of years and her disease progressed steadily.

Harry

Chimerix Commences CMX001 Open-Label Clinical Study for the Treatment of Patients With Life-Threatening or Serious dsDNA Viral Infections

http://www.prnewswire.com/news-relea...-study-for-the
-treatment-of-patients-with-life-threatening-or-serious-dsdna-viral-infections-113068214.html

Note JC Virus is one of the included viruses

Just an FYI,

There is an archived thread from this Tysabri forum (Part 1) that starts back in 2008, and it has LOADS of info for those who like to read!
http://neurotalk.psychcentral.com/thread37891.html

The current thread (Part 2) will be closing and archived as we reach high numbers and we will be starting another one to ensure that we don't mess with the server.

It's my hope that we continue to offer relevant information and support to folks who are on Tysabri, and for folks who are considering Tysabri as a therapy and would like to talk to others who are on Tysabri.

We've come a long way, and as you can see if you read all about it, we have a long way to go. Thanks to all of you who have contributed to this thread through the years. You made it what it is, a source of support and information for all of us. :grouphug:

>>>>>... Continued on Thread # 3 http://neurotalk.psychcentral.com/thread142931.html