New to Ty

[deannar79]

Hi all,
I know there are several posts like this one so I apologize in advance.
I will be starting Tysabri this month and I am pretty terrified. I am torn between not reading enough and reading to much. The more I read the more scared I become.
I was diagnosied in July 09. I have tried Betaseron and Copoxone. My neuro deceided she needed to get more aggressive.
Any tips, clues, heads up anyone has to offer I would appreciate! I understand that everyone is different but would like to hear about other experiences.
Thanks to all!

[0485c10]

Well tell us more about your life so we know better what helped us that might help you?

i was very anxious too, i'm an over researcher too & it was very anti climatic for me luckily. I think in a way i over research and imagine the worst at times so i am always pleasantly suprised by reality, its always better than i imagined.

some things that i found helpful and there are alot others will add..being fluidized was really important to me. its common for ms people to keep themself slightly dehydrated because of incontinence, which i did but it made me very tired to do that after i started tysabri. took me almost 6 months to figure out i wasn't drinking enough and that cause much of the fatigue for me.
i finally discovered it when i noticed that the blood pressure they get before every infusion was lower when i had not drank much & when it was lower i was more tired. So i began to keep my fluid levels up all month based upon my bp reading.

then i have a chronically stuffy nose..pretty much take a 24 hr non drowst claritin d every morning for my stuffy nose. if a person has a reactuion to tysabri, they give the person a benadryl or claritin d--i've wonderd if my routine use of claritin D made my tysabri infusions so uneventful?

then, because i am an anxious, obsesive researcher--it was natural that the night before the infusion my mind would just race with thoughts causing insomonia--at time i had not slept in more than 24 hour before my infusion---that made things worse then they had to be. I made a policy for myself that if i was not asleep by midnight the night before i would take a benadryl as a sleep aid, which was enough to keep me asleep but not over sleep-prevent racing thoughts that kept me from sleeping.

Then tysabri takes about 6-9 months to build up a consistent concentration in the blood--so for the first 6 months my improvement was very variable that made me depressed. At time i thought it wasn't going to help the next day i thought it did? Emotional rollercoaster. I think a person has to consciously pace themself for a while on the good days so the bad days are not so bad.When i read that concentration varied a lot the first 6-9 months i became less depressed and more patient, it helped reading THAT detail! Things became stable for ME after 6 months so i must have been in the early range. i learned what was reasonable for me to do on the good days with tysabri so that helped too.

Are you interested in the steps you will go through at the infusion center? My reply is long enough, perhaps another person can describe all the steps involved in the infusion, if you knowing in advance what to expect would make you less anxious?

[deannar79]

Thank you very much for the input.
I am a mother of a 5 year old girl and I work full time.
I was wondering if I may need to take the day after the infustion off or try to do it on a Friday.
My main issues involve leg pain, overall weakness, and major fatigue.
Thanks again!

[Scooter24]

because i am an anxious, obsesive researcher

I am glad you said that yourself, I have often thought that reading some of your posts

I have been on Ty 18 months now and am very happy I made the decision to go on it, I fell 200% better than I did on both avonex and copaxone, It took about 6 months for me to feel any difference as others have said in my energy level, I do no prep what so ever before hand and feel fine afterwards, the first 2 or 3 I had a slight headache for a day or 2 but nothing bad just enough to let you know it was there, the only times I felt sleep afterwards was when I did take a clariton they gave me, I haven't taken them in over a year. Now and then a few days before my infusion I will feel as though my batteries are low but within 24 hrs afterwards I am back up to full power.

Good luck

[0485c10]

I was wondering if I may need to take the day after the infustion off or try to do it on a Friday.

For me at first there was a very relaxed feeling, not unpleasant, but i wanted to rest and enjoy that relaxed feeling. it was stronger in the first few months so it sounds like a good idea to take a day off if you can go with it ..its not tired to the point I can't do something but relaxed to the point I don't want to if i don't have to and since i know that relaxed feeling is coming i try to schedule things so i can relax for a few days after.

the friday question--i've had 37 infusions and Friday is my infusion day. I don't work or have kids but on friday's the nurses at the infusion center are more relaxed. At first i went on mondays to get it over with--monday-wed the infusion center is always trying to pack appointments in. Sometimes at short notice. I eventually moved to wed then to friday and i prefer friday. I live in a snowy climate half the year. So friday afternoon in winters, the infusion nurses have pleasant plans of the upcoming weekend. Friday morning in summer and there have been times where there were only a couple of people getting infusions. Much different then modays!

I would chose friday for that reason.

Scooter24, no flaw seen. no offense taken. us obsessive researches think its the rest of the world that are missing out, that they haven't thought of everything yet. but they will.

[deannar79]

Thanks guys. I seem to be a nervous wreck, had a panic attack today at work.
Since Sept I have not had a painfree day. Some days are not as bad but it is taking its toll on me majorly. I have been in the last flair for several weeks but since I will be starting Ty my neuro did not want to give me anymore steroids.
I am frustarted and am hoping for good results!

[LL60]

deannar - welcome and good luck on your journy.
I work and do my infusions on a Friday too. And like some others at first I would get a bad headache. Gosh, haven't had one of those for a long long time. I go this Friday for my 31st infusion.

Don't expect too much. It really is an unknown. But many, myself included, have had great results, so hope you do too.

Take a book or headphones and a snack and something to drink. Infusion centers are so different - from being in a small doctor's office where the wife brings in cookies and juice - to huge hospitals where it is noisy and unfriendly. My place in probably somewhere in between. It is at a small hospital where they give chemo. It tends to be a bit nosiy at times so I gave up trying to read. I take CD's and listen to prayers or music. I usually sleep though half to most of it at times. Afterwards I walk the long way to my car to sort of wake up for the drive home. I drink a full bottle of water on the drive home.

I have them use a heating pad on my arm before they try to get a vein, that seems to help a lot. Drink a little more than usual the day before and the day of. That helps too.

Go to Tysabri.com or to youtube and watch the short video on how tysabri works. It is pretty cool and give you an idea of exactly what is going on as it is going though your brain.

Keep us posted.

[KyleW]

Hi deannar79 - I'm a Tysabri newbie too. I had my first infusion 8 days ago It was a breeze!

I got the Tysabri drip over the first hour and a saline drip over the second. At my center they want to make sure you're OK so they have you stay the second hour just for observation.

After 2 hours I walked out like nothing had happened. The next day I felt pretty good!

I'll bet you'll do great

[deannar79]

KyleW

I am glad to hear the first infusion went well, I hope that it continues to go well for you.

I will hope the same for myself. I hope that my first infusion will be anti-climatic since I have worked myself into a tizzy.

My infusion center also states I will be there at least 2 hours. It is a two hour drive for me so I will have a driver-I dont drive that far by myself regardless.

Thanks to all of you!

[Vettegirl]

I just had my second infusion last night, and so far so good. I did notice that I seemed to be running on empty the last couple days before my infusion. Then today, I feel much better. I was having relapses like clockwork every other month for the last year, and new symptoms along with those. I am hoping that things will stabilize and I can have some peace! It is a scary treatment course, and I wondered in the beginning why anyone would risk it. Now I know how bad this thing can be. Stay strong, everyone!

[salamandertom]

I am getting my first infusion this month too. I have researched SO much (I am a biology major hoping to attend grad school for biomedical research) and I really feel that it is SO worth the risks, which are minimal. Personally i made the choice that the risk was worth it. Well worth it. I don't know what else I would be doing that has the sucess rate of ty.

I am like the above poster with flares every other month for the past year. I took beta and still have two new spinal lesions, a new brain lesion and a growing spinal lesion. I also live in constant, terrible pain.

HUGS and good luck

[lindaincolorado]

Hi deannar79, I have had 62 infusions. I do not have side effects-maybe twice a slight headache. I have flown immediately following an infusion, I have gone to lunch, I have played cards-another words I continue life... the life Tysabri has afforded me because it has halted progression, given me better balance, more endurance and less fatigue! WOW what a blessing

I hope you do at least as well. I noticed the improvements starting somewhere between 4-6 infusions.

Good luck and RELAX

[augie jr]

Hi all,
I know there are several posts like this one so I apologize in advance.
I will be starting Tysabri this month and I am pretty terrified. I am torn between not reading enough and reading to much. The more I read the more scared I become.
I was diagnosied in July 09. I have tried Betaseron and Copoxone. My neuro deceided she needed to get more aggressive.
Any tips, clues, heads up anyone has to offer I would appreciate! I understand that everyone is different but would like to hear about other experiences.
Thanks to all!

it's not unusual to be scared,confused. you are right,everyone is different. it help's to keep a journal.than you won't
forget what is what. i started one for med's. i take so many. it's just easier. plus if your like me,my memory has really declined way before.i need to keep a record of any changes.
with myself.
anything else i can help with just reply.
take care of you,augie.

[Lee410]

Starting on Tysabri next week

Hello all, Im a second grade teacher. I was diagnosed in July 2011 . after being in the hospital the 1st time.they werent sure but i had signs of MS After i wanted a second opinion. while waiting for my second opinion i had another relapse that time i had 17 more brain lesions. This doctor found more lesions. so then i got on copaxone from August -December i was on copaxone. Now they want me on Tysabri. Im very scared from the side effect the one thing that scares me is getting PML! I know they say you can get it but thats the part that scares me. so im glad i found this site. im scared also deannar79

[ru4cats]

Lee410,
I was diagnosed with MS 1 year after I retired from teaching. My neurologist wanted me on Ty, and after a month of investigation, I agreed. I recently had my 6th MRI after 18 months on Ty, and she said she'd show me my MRI, but there was nothing to see: no new lesions, no enhancing lesions. I am very happy with my decision. My disabilities exist, but they are limited, and I have adjusted.
Your risk of PML for the first 24 months is negligible, and by then there will be at least 3 new drugs available. I truly believe it is worth the risk. Your chance of getting MS is 1/1000; your chance of getting PML is 1/1000 for the first 24 months.