I need a favor. My WBC has been off the charts and today at dr's office I had him dig in records and turns out my WBC was 10 (high but now its 20) the month BEFORE starting Ty (Nov 2009). Biogen didn't log bloodwork during trial (amongst every other co ive asked) so can you please tell me if any of you have elevated wbc? Thanks. After all, it's what's eating us up right?

ed

EddieF, I hope somebody will reply to your question.

There has been some additional information on the PML cases:

The chefarztfrau Website, which seems to have access to internal sources, is listing 3 more PML cases:

#80 - Female, 29 months on Tysabri, Germany
#81 - Female, 34 doses of Tysabri, USA
#82 - Male, 50 doses, Poland

There is added information for cases 75-79:

#75 - Female, 33 months on Tysabri, Germany
#76 - Female, 49 doses of Tysabri, Hungary
#77 - Female, 49 doses, USA
#78 - Male, 25 months on Tysabri, Germany
#79 - Female, 24 months on Tysabri, Australia

http://chefarztfrau.de/?page_id=716

Told neuro today switch me back to Copaxone. Tomorrow will be my last Ty for who knows how long. I'll do C for a few months, hopefully my white blood count comes down to earth, then i'll try Novantrone or Gilenya. He said Gilenya & Novantrone are kinda the same. I chose C as a bridge to Novantrone or Gilenya. I'll let ya's know if white count comes down in a few months. Tomorrow will be my 14th? dose of Ty.

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 :/

Hi Ed!
Do you have the WBC done before or after infusion?
I ask because when my WBC is done after infusion, they are in the high range. The doc explained that it will be higher than normal because the WBCs are circulating in the bloodstream but cannot attack the myelin by crossing the BBB because very few of them get through, so they are milling around with no place to go until they die off or find another infection/inflammation to fight. They come back down as the month goes by. Tysabri also attacks the WBCs when they are immature, killing them off before they can cause any damage to the myelin.

If your WBCs are high right before you have your infusion I would be asking questions about other low grade infection/inflammation, such as diabetes, arterial disease, low grade infections in other parts of the body, etc. Even gingivitis can cause high WBCs because it is a chronic inflammation, although a person may not feel ill from the infection. Any disease process that causes inflammation will increase WBCs.

This is why the big long fact sheet that is included every time you get anything about Ty includes information about infections, because in some people, Tysabri lowers the WBC to levels that don't fight infection /inflammation as fast as they would if there was no Ty in the system.

In my case, the WBCs are never above the high normal range, nor are they below the low normal range. My doc says it's because I am disgustingly healthy and he can't make any money off of me because of that...

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?

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.....

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... (after 47 infusions!)

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