Tomorrow morning is the day...

[shel67]

Tell me why again I'm doing this?? I'm so nervous to do Tysabri. I still didn't see the DR. He called and said I can do TY and with in a week I was on for the infusion. Please tell me I'm doing the right thing. I have been feeling better. I hope this does not mess that up.

[tortis]

WHY TY?

Hi shel67, only your Dr. can tell you why you are doing TY. Your Dr. must have thought it was your best option but I can only guess. I do not think anyone on this forum will tell you to do it or not do it.I am still very apprehensive about it but I was progressing so fast I had to try to do something.
I will be getting my 3rd. infusion next Monday so I really do know how you feel. I wish you the best of luck.
PEACE


Tortis

[lindaincolorado]

Hey Shel67, yesterday I had somewhere around my 110th infusion. Tysabri has been a life saver for me.
I wish you could/would relax. Most people do fine with the infusion. If you have a problem you will be given Benadryl maybe slow the drip or just stop the infusion. You will be taken care of. No cases of pml in the first 12 infusions and pml is rare.

I recommend you hydrate well, probably starting today-this is make the stick easier. Bring something to keep you busy-I read. If you might be hungry bring something to eat.

Let us know how it went.

I wish you well!

[frosty123]

3rd infusion Friday

I have to say, I think it is helping me. I was very reluctant and waited almost a year before accepting that I needed to do something...so far, so good.

I wish you well.

[shel67]

Had it done

Well, it's over. sigh of relief, sorta. Nothing happened. Very uneventful, even boring. I feel nothing. I feel fine aside from the usual MS. Notta, nothing, zero, zilch... so far. the next 24 to 48 and I'm in the clear. hoping and praying this is going to work on the MS. And I've had more improvement in the last few days. I swear I think hormones effect this.

[tortis]

GREAT

Hi,it is really good to hear that all went well. So kick back and relax now. Well I get mine on Monday, hope it goes as well as yours.

PEACE

Tortis

[shel67]

Hopefully yours will be fine. I'll pray for ya. I drank about a gallon of water 24 hours before. Linda said that helps. I drink water anyway but I made sure I was hydrated.

I really am feeling okay. I don't want to say I worked myself up for nothing because I still have another day to go with out feeling side effects but I really worked myself up over nothing. It was fine and the nurse said they do many many of these infusions a day and generally people do fine.

So relax. The most important thing is that this stops the MS progression and activity for us both. I don't feel any improvment on symptoms so far but its only been three hours, other then the improvment I noticed this past week but if nothing worsens I'll make it. All we can do is give it to God and hope and pray.

And thanks to Linda and everybody for all your encouragement.

[lindaincolorado]

YEA! one down Shel67
You are next tortis. I wish you well !
I hope Tysabri is a great med for both of you

[allHailye2]

shel67 - How crazy is this?! I had my first infusion yesterday too!

[shel67]

Day Two

Today I'm feeling a little tired and just a little like I don't feel good but its just a little bit.

[allHailye2]

day 2

I took a massive nap this afternoon...slept like the dead.

[Deela]

Five infusions and feeling good

Yay shel67 & allHailye2! So glad you both had positive experiences on your first infusion. I generally get tired afterwards. Being in the infusion center itself is tiring.

After 5 infusions, I am feeling better than I have in years. Still working on reclaiming functionality and mobility, but overall more energy which is awesome.

I am lucky that my day 1 is the same as day 28...wishing the same for both of you.

Tortis- hope all went well with you.

[allHailye2]

day 3

I have a pretty good headache.

Deela - I wouldn't describe my first experience as positive at all. Sure the actual infusion was fine, but the infusion site was horrible!! I am complaining to Biogen & having them switch my infusion center.

[shel67]

day 4

My infusion site was perfect. But yesterday I was tired, today really tired. Here's hoping tomorrow will be back to normal. I'm not sick,no headache, just tired like you are when you're sick but I don't fell sick, just tired like I am. Low energy.

[shel67]

An update

Hello all. Hope everyone is well and had a Merry Christmas. Sorry I been away. I'm stopping by to give an update and maybe it will help others who are contemplating Tysabri.

December 10th was my 4th infusion and all in all its been uneventful. I have no real side effects from the infusions so far nor do I have any major improvement. I leave feeling the same as I go in. I'm still working full time so I guess that's something.

After the infusion maybe over the next few days I feel a little off but by a week or two I begin to feel better. I don't feel bad at all when the next infusion is due. All my MS symptoms are still there and sometimes they feel less intense than other times. The month of November was better than this month is going. The infusion I think increases some anxiety and a wee bit of depression but like I said by two weeks I feel better. The last week for me is a really good one. This rollercoaster is enough to make me crazy. I just wish I would stay at my best all the time but I guess that's asking too much of this disease.

Anyway I didn't experience some great healing of symptoms. I was feeling pretty good when I had my first infusion back in September and I just wish I could stabilize and be that way all the time. I really thought in September there was a light at the end of this tunnel but no. So I really don't know what this medication is doing for me. I had MRIs last month and I go to see what they look like next Monday. So I'll know if I have any changes or not. I hoping in the next 2 months this drug will be in full effect and I can just feel good all the time and be stable.

I am thankful that I am on this med and it costs me nothing. In fact the $137.00 I've been paying for the infusion cost was an over payment. I only have to pay $37.00. That's been the only good news I've had since this all began. I'll have this for free for another 8 months and then I don't know.

I do think me drinking a TON of water helps with side effects. I haven't gotten any headaches which was my greatest fear. I haven't gotten sick either, my other greatest fear and I did get a flu shot but we haven't had the flu here. It's been in the 80's. Not one cold day yet. I guest that's a blessing.

So, so far so good. Still trying to look for the positive of this situation. Haven't found it yet. God bless us all. I just want to get to a place where I can live with this.