starting tysabri need info please

[graybird]

the good the bad and the ugly! i know nothing about this

drug so any info would be helpful

thanks!!

Tysabri has saved me from having any attacks. Im on my eighth infusion. I keep getting better and better. It's a slow process, but I have to be patient. Going to the infusion/MS center is not so bad. It's definitely worth it. I've endured the winter and the snow and now that Spring is coming, I'm looking forward to my next infusion. Make sure that you drink lots of water before you go. It helps to pump up those veins. You have a choice to be able to have a port installed if you don't want to be poked every month. It's up to you. Good luck and let us know how it works out for you.

[LL60]

Hi Graybird,

You must have done some reaseach before you started on the med itself. As with most things in life, your experience will not be exactly like anyone elses. So now that you have done the research and will start on this med, there are lots and lots of stories here. Just go down the page and see if something interest you. Those who have other illnesses along with MS, can you get the flue shot too, how often do people see their neuro docs, just about anything ty related you would want to know.

If you don't see a question answered, then just start a new thread and ask away.

You will be surprised how different people experiences are with the same drug and following the same rules of the TOUCH program. I have never been offered a port, and have not come across many who do. That would be another line of infection into the body. But see, someone has.

The infusion centers seem to be differeent to. I go to the hospital to do mine. Have had 21 so far. It is where people get their chemo treatments too, so it good for me to be thankful that I "only" have MS. Some infusions centers offer cookies and juice and are very small.

I have small rolling views and so drink a lot of water starting the day before and they use a heating pad on my arm for about 10 minutes before hand to help my views. I also have started lifting hand weights. That will build up your views and make them tougher too.

I take CD's to listen to. I tried a book, but it is just too busy and sometimes noisy for me to read. I get pre meds so many times sleep at least part of the time.

The first time I had my husband drive me. That is a good idea until you see how you are. Now it is nothing and I drive my self in Friday night traffic. Which is probably better, because it is slower. : )

I take something to eat and take my own blanket to. Although they have the warm bath blankets you can ask for too that are so nice.

When I come home, I always went to bed for the frist few months. Was very tired. Now I don't always. I sometimes have a drugged feeling, although not always.

With 24 or 36 hours I feel very good and have so much more energy. It last a day or two after the first one, and gradually increased until it last almost the full month now. I can usually tell when it is getting time for another infusion.

Tysabri has helped me greatly. I am very glad to be on it and plan to stay on it. I hope you have good results too. I noticed a difference after 3 months. Had a relaspe just after that. But by 6 months there were differences that could be measured and everyone could tell. Since then it has been smooth sailing.

Good luck.

[ru4cats]

I will receive my 8th infusion on Friday, and I agree with everything said so far (I was also excited to see others living in "snow country" who are having to endure this horrendous winter). It took me 6 infusions before I began to feel positive effects. Tysabri is the 1st and only medication I have been on, and I am thrilled with my decision. It is such an easy medication to take, even with the risk of PML.
I do read while I'm having an infusion, using an iPod touch with downloaded books. I make it "my day", and I look forward to the quiet time the infusion affords me.
With each infusion I've noticed a lack of energy the few days before I'm due and intense energy the 1st few days after the infusion; I've really learned to listen to my body and make an effort not to "stress" my body. Usually at the gym three times a week, this week I'll exercise at home with a DVD I have for MS.
The one recommendation I would make (if it's available) is to do a "cost comparison" of infusion sites. After three infusions at a hospital I was shocked to learn the cost per infusion approached $11,000 at the hospital infusion room(even in the Montana outback!) I checked out a couple other infusion centers on the preferred provider list for my insurance company and found one where the price was 37% of the hospital. Although the insurance company would continue to pay for the hospital, I found the cost difference outrageous and switched. I have found I enjoy the new center much more than the hospital: much quieter, more relaxed, and better monitoring. Just a thought.
Good luck! I hope your decision is one that you find was right for you.

[lindaincolorado]

Hi graybird,
I would hope your neuro has discussed this med and others with you. Have you been on any of the others ? Tysabri is the big gun to slow progression, relapses and for better MRIs.
It, also, has the rare side effect of pml-the longer on Ty the chance of pml increases. There have been no cases of pml for the 1st year, very few the 2nd year and then it increases. I have been on Ty for 4 1/3 years with good results

My infusions are done at a hospital-I have experienced 4 different hospitals. My veins are small, rolling, deep (I remind the nurse of this). I need to hydrate and keep my arms/hands warm. I have not had any side effects other than an occasional headache. You can go to www.tysabri.com to read all possible side effects. Rocky Mountaintn ms Center has good info on Tysabri.

Along with being hydrated I either eat before or make sure I have something with me-some hospitals offer me lunch. I bring a book as the infusion takes 1 hour and you have to remain there 1 hour after-so depending on how long it takes to get in the vein, get your med brought in you are there for a definite 2 hours and maybe 3 (or so-I read someone was there 4 hrs ) You will be asked questions before each infusion-which is every 28 days and probably asked to read a pamphlet explaining Tysabri. This is Touch (which you should've been signed up for) procedure.

Hope all goes well for you !!

I can't think of more to type

[graybird]

thanks

thanks for all the great info.i find myself going back and

forth between tysabri and going back on copaxone.my

neuro seems to think this is a better fit.

I am worried about the cost ,PML,the unknown.worry

worry worry.I am also manic depressive with paranioa,

and worry (big suprise)This will make things worse.

any insight on what you pay monthly (if you wanna say)

would be appreciated.

[ru4cats]

Tysabri cost

As I mentioned earlier, the hospital infusion is WAY MORE than a "small scale" infusion center. The hospital charged $10,000 for the Tysabri and $600 plus for the nurse plus miscellaneous charges. The total was $10,800. At the center I use now, the Tysabri is $3700 plus $225 for the nurse. The total paid is about $4200. I pay a $1500 annual deductible and then 20% up to $3000 out-of-pocket, at which point I pay nothing. I met the deductible and out-of-pocket in one infusion at the hospital. Hope this helps.

[graybird]

ru4cats

thanks it does!

[DancesWithPugs]

I only pay a $25 copay for each infusion. I know, it's almost embarrassing how little I pay in comparison to others. Heck, my husband's allergy meds are more expensive than my Tysabri.

We don't have a deductible, and our meds are on a fixed Tier system. I'm not really sure how it is billed... as a doctor's visit or as a Tier 2 drug, but my Neurologist has the infusion set up in his office with a specialized TOUCH nurse, so that may make the difference.

You could call your insurance company and ask.

[Tomjadg]

DWP
You are much like me.
I have a $20 co-payment, but they didn't ask for it. Small yearly deductible.

I also did Rebif first with no results, and my Neuro and the infusion is in the same office.
MRI is down the hall.
Only 20 minutes from home, so everything is convienent.

[DancesWithPugs]

DWP
You are much like me.
I have a $20 co-payment, but they didn't ask for it. Small yearly deductible.

I also did Rebif first with no results, and my Neuro and the infusion is in the same office.
MRI is down the hall.
Only 20 minutes from home, so everything is convienent.

If you didn't live in PA, I might wonder if we had the same Neuro. Even the MRI clinic is down the hall, and yep, exactly 20 minutes from home. LOL

[Tomjadg]

That is pretty funny.
No pug, just a spoiled cocker spaniel.