Starting Tysabri & Scared to Death

[Wrigley]

Hi...I'm new to MS (diagnosed in July) and now to Tysabri. Having a hard time digesting my MS diagnosis and now I am freaking out about starting Tysabri. I haven't been on any other MS medications. My doctor said to start with the best medicine on the market to help stop the progression. Steroids only helped me for a few weeks.

I spent some time reading the Tysabri threads on here and it seems as if it is tolerated well and definitely helps. I am terrified of Tysabri after discussing all the risks, how regulated it is, all the calls I am getting from Biogen, etc. If it was just me, I wouldn't care. But..I have 2 little ones (4 and 6) and am scared to death of getting PML and dying (sorry for the drama).

I go for my first infusion just before Christmas. I can't sleep, all I do is cry, and I am terrified. Am I making a bigger deal out of this than it is?

Any insight on Tysabri would be appreciated. I work full time and was wondering if I would be able to go back to work after the infusion.

[johnsprincess]

scared with you...

Hi Wrigley,
I too, am new here and new to starting Tysabri (haven't got my first date yet) and have many of the same questions as you. I will be watching your thread to see what wise words of wisdom everyone has for you. I can understand where you are coming from and am right there with you. I was on Rebif for a month and that did not go well for me, I had way too many side effects that weren't going away and were getting worse rather than better as the injections increased. So, I am hoping that the Tysabri will be more tolerable. I wish I had some info to share, but I am clueless, and I wish you the best of luck with your treatment.

[LL60]

Wrigley and johnspriness - welcome to msworld.

You have come to the right place. We can all share our experience with you. Many here have tons and tons of information. Over 88,000 people worldwide have been/are on Tysabri. Of those 181 have gotten PML and 21% of those have died. I think that comes out to less than 2 in every 1,000. With small children I bet odds of 1 in a million would be too much. My kids - all adults - laughed and said that 1 in a million, they would worry about me, because I always seem to be that one person many times. But 1 in 1,000 (the odds when I stared over 2 years ago) wasn't so bad.

Ask a ton of quesions. Why does your doctor think he must start with the big guns? Is your MS "bad." What is he seeing on the MRI that is steering him towards this treatment? It is the best that is out there right now. And for me, there are very very few side effects, especially after the first few months. I did get short term bad headaches in the first couple of months. Not now.

I went back to work one time afterwards because there was an inportant report I had to do. I was there just over an hour, just long enough to finish it and I had to leave. I had an infusion on Christmas Eve once and my son had the family over. At the time he lived just a few houses down the street. I started feeling weird and ended up walking home about 10 that night. I usually take a sick day on that Friday and sleep most of the afternoon when I get home. By Monday I am ready to go back to work and forgot about MS for another 4 weeks.

Read, read, read. And ask questions. Rocky Mountain MS Center in CO has a great newsletter you can sign up for, either in print or online. I do both. NMSS is a great sourse too. Most places have a local chapter.

Try not to be scared. I would take that that you need to talk to your doctor more. I found over the years that attitude is important. I take tapes and meditation and sleep during the time. I tried reading, but it is very distracting where I go. It is a busy place. People are getting chemo there for cancer, and it always makes me very thankful that I "just" have ms.

I totally freaked when the doctor told me I had ms. It came after years of everyone telling me it was nothing. So it was a shock, I was sitting there on the exam table waiting to hear the same old story of how it was nothing. So I do understand the freaked out feeling.

But for me, going on the Tysabri was the best thing I could have done. I was on Copaxone for 5 years first.

I don't have small children. But I have 3 beautiful grand daughters. 4, 3 and 2 months. Tysabri gives me the energy to really enjoy them. I couldn't do it without Tysabri.

But I know this must be hard for you. Just wanted to share how it is for me and say welcome to both of you. It is a hard choice to make. When I couldn't take Copaxone anymore and was researching all the things out there I learned a lot and asked a lot of questions of people. Got feed back from my PCP and my dermatologist (I had read Tysabri increased risk of skin cancer and I have had skin cancer) and other doctors. They all voted for Tysabri. And actually my neuro didn't. She wanted me on a chemo drug and to just hope something else came up before I hit my limit on doses. That sounded like crap to me, so I started the Tysabri. And I am very very glad I did.

[Hawkgirl]

I'm in there with you guys! I will be starting Tysabri soon and have really thought hard about the risks. But I think it's worth it. I am JCV negative right now (and hope it stays that way), and my kids are 10, 6, and 2. I don't want to miss out on a minute of them. I am trusting to God that it will go all right.

I have many of the same questions as you but like LL60, I've had MS for a long time. This board is a great resource for getting information on this strange disease. That my general MS advice: ask questions, get informed. You will learn things that might surprise you. When I was dx'd, I did just the opposite (on the advice of my first neuro) and did not investigate at all. I thought I'd be in a wheelchair within the year (because I thought everyone with MS was in a wheelchair), but here I am 15 years later, still walking pretty well.

Tysabri sounds very good, and we're all hoping for the best. And they are still researching; maybe they will figure out what causes this disease and make something that will shut it off! Today I'm thankful for research!

[Myoak]

Hi Wrigley and Johnsprincess

Keep in mind that if you are JC virus negative your risk of getting PML is close to zero.

Also, Wrigley you mentioned your doctor wanted to start with the best med to help stop the progression. I’m sure your doctor wants to give you the very best chance at good health for the longest time possible; especially considering your young children. My wife started Tysabri in 2002 and continues doing exceptionally well today.

May peace settle your hearts and minds as you go forward.

[MSMissy]

I had the same scared feelings about Tysabri before I got my first infusion on 11/15/11. Reading all the side effects would scare anyone. I had the infusion late in the day an went home after and was tired, as usual so just rested. I got up an went to work the next morning and was expecting to feel like I had since I was DX in August of this year, and I didnt.

I have felt like I did pre DX and I love it. I still get tired easily but dont have the tingles in my legs and arms, still have them in my head but I have convinced myself that its the Tysabri doing its job on my lesions!! I hope you get great results out of this like I did. Stay positive!

[0485c10]

There is always a "sally downer" in every group & it looks like i am the one that has to play that role this time.

it seems to me the trick to living with this disease is always plan for the worst, expect the best and set the odds for the best to happen.

with regard to this type of planning, I am concerned about you going to work right after the first infusion with 2 little ones to care for also at the end of the day.

Being a working mom is tough for all who do it and very needed by family and the future well being of our country.
Thanks for doing that.

to set the odds for the best for your first infusion it would be better if you were not stressed or feeling like you were rushed for time. I wish you did not have to go to work right after the infusion, but reality exists and a person has to work with it.....

1. Be sure you are well hydrated before the infusion. Being well hydrated will make it easier to find a vein to stick + being slightly dehydrated tends to cause more fatigue(which you don't need if you have to go to work right after)

2. is there someone who can watch the kids if you want to sleep more than normal in the evening.

3. Maybe pick up a pizza or some subs for the kids meal that evening.

4. and if you have any anxiety the night before that causes insomnia, take a sleep aid before letting the insomnia go on to long. The first few infusions i didn't sleep at all the night before with my mind racing. I eventually just took a benadryl as a sleep aid at midnight if i was still awake. it keeps me asleep once i fall asleep & doesn't leave me with grogginess that would let me sleep through the alarm clock.

that's my 2 cents, tysabri is going to do well for you as it has done for me over 37 infusions...just set it up so you have the likelihood of achieving the best from your first infusion.

By now i have relatives trained to be more considerate the week after the infusion...but the training didn't come easy, i had to be a monster with them at times. At times i suspect i was as little too hard on them but i like the results i no longer have to argue for. In hindsight, it was worth a few initial fights.

[okhoney]

My kids were 8 and 12 when I started Ty 2 years ago. I had already been on all the ABC drugs. It was an emotionally torturous choice to make and I spent some time trying to figure out how I was going to teach them everything they would need to know for a lifetime before I started the drug - ha! impossible. Needless to say, my brain hasn't melted yet(PML). I was sick from mid October to April last year and this year looks like it might be the same so I am anxious for a non immunosuppressant option to come out.

I felt really tired after the first few infusions so I think pizza is a great idea! I would not want to return to work the same day.

A comment from one of my friends made the leap a little easier. She said(about the PML risk) "You're pretty special but not 1 in 1000 special!"

Good luck fellow Mommies!

[Tomjadg]

Relax.
Your odds of being in a car wreck are much higher.

Give it your best shot to maybe get some help.

I do #11 on Friday. I'm positive, and if it was helping, I would continue the infusions. I have had a steady decline, so I will probably stop Ty and try LDN. Rebif didn't help either.

I hope you have better luck. Many do.

[KyleW]

I can understand the hesitancy before starting Tysabri. I had it too.

Yesterday I had my first infusion. It was a complete and utter non-event! Not so much as a slight bruise at the injection sight You'll do fine!