Tysabri - week 3

[Cosmobirdy]

Hey guys... :)

Just checking in.  Well, I think the Tysabri is definitely helping some.  Last week, I was starting to feel a little more "normal", for lack of a better word.  A little more like the old me.  The people at work even noticed it.  I wanted to interact with people more...had a little more zip than my usual zombie self.  By last Wed. or so, the hip pain had really backed off alot, and it hasn't bothered me much at all for several days now.  

The pain in my feet was alot better also....till today.  I have read that alot of people start to feel worse again the last week before the next infusion, so I'm guessing that is what is going on.  I have felt awful since yesterday.....the fatigue is hideous again, the nausea, just feeling rotten.  The feet started up again today - totally caught me off guard.  I guess I had kind of forgotten how much they hurt when they act up... :)  Also noticing alot of the old symptoms starting up again in earnest - the various tinglings and buzzings, and the swaying is starting to get worse again.  Fingers are being kind of awkward today.....that had been alot better for a couple of weeks, too.

So, the good news is that the Tysabri must be helping.....the bad news is that, if it is, then this whole thing is not just some colossal mistake... :)  I didn't realize I was still harboring that hope on some level, till the realization hit me like a brick today.....Still have alot of work to do on the acceptance thing, I guess, lol.

Next infusion is this coming Monday, so we'll see what the next month holds.  And we'll see what else happens this week as more of the Tysabri apparently wears off.... :)  I'll keep you guys posted as long as you want me to....just let me know.......Hope you all have a good week!

Rita

[immisceo]

There are a good few people here who are on Tysabri. If you choose that route, you're in good company! Looking at your profile, it seems like you're "fresh out of the oven", diagnostically speaking. It's the club we hate to welcome people to, but we're a friendly bunch at least!

Are you in the midst of your first Solu-Medrol at the moment as well (I may have misunderstood that)? Feel free to start a new thread if/when you're in the mood to introduce yourself. (alternatively, feel free to lurk. Kick the tires, so to speak. Lord knows I did!)

[alove4mersey]

I had blood drawn today to check for the JC virus. My neurologist wants to start me on Tysabri as soon as possible and I am hoping this is the right decision for me. I am still doing research and weighing out my options. The thought of giving myself shots gives me the chills but if it's a different medication with less side effects (risks) then I may go that route...... Hmm?

Brandon
Dayton, Ohio

[Manyblessings1318]

Hi Rita

I saw your post, I just did my 19th infusion and I tested postive for the JC Virus after my 6 month infusion. I would like to know about, your not easy road. As I believe this is the right choice for me also. But I'm struggling a bit these last couple of months  thanks all, Lisa W.

[Cosmobirdy]

LuLu is right - this is a very old post .... :-)

I have remained on Tysabri since then - I just had infusion #51.  We still feel it is helping, but I have had some new things since I started.  It hasn't always been an easy road, but it's the best thing out there for me at this point.  I am JC positive, so we are always re-evaluating the situation.  

Rita

[Lulu54]

You must not have noticed that this post is from 2008 - Rita now has several years worth of infusions done and continues to do ok with it.  She lurks here quite a bit and will probably see this.....

[debgen]

Hi Rita,

It is so good to hear from you. I am glad that you had 3 good weeks with Tysabri. I think 3 good weeks is a blessing! I'm sorry this last week has been painful for you and of courseb I'm hoping that you will feel really good again after your next infusion. As always, my prayers are with you

Keep in touch,
Deb

[kwarendorf]

Hi Cosmo - I'm glad to hear that your infusions are going reasonably well.

After my first couple of infusions I perceived an uptick in my energy level. I was lucky not to experience the fall off as the next infusion approached.

I'm having infusion #12 on Sunday. I don't really notice the energy uptick anymore, but at least I still don't notice the fall off.

Overall my Tysabri experience has been very positive. I'm JCV negative and ongoing MRI monitoring shows no sign of PML or MS progression!

Kyle

[littlea4550977]

This discussion has really helped me I didn't know why I was feeling so bad until read here that last week before next infusion is like that thanks really helped to know

[Fluffysmom]

Hi there, Ms. Rita!  

I'm so glad the old you is being unveiled!  I hope the week of feeling yucky fades as your body gets used to the Tysabri.  Three good weeks are pretty darn good, like you say, but I'm greedy when it comes to feel-good days for my friends and forum family!

Hope things are going fairly smoothly at home (my Fluffy is driving me crazy; he might need a change in meds).  I think of you fairly often, and hope you're doing well.  Do keep checking in and keep us posted.

Hugs,

Kathy

[lbradley35]

I am sorry you feeling bad this week. My neurologist told me that after the first infusion I would feel good and then the closer it got to the end of the month I would feel bad again. She after the third infusion I would have a level amount of Tysabri in my blood. I guess she was right because I don't feel sick any more after the infusion....just very sleepy.  Hang in there and remember there are alot of people praying for you. Keep us updated on your prgress.

Lori

[Cosmobirdy]

Thanks guys.... :)  I'm really encouraged that the Tysabri will make a big difference for me as time goes on.  Hopefully, it will kind of be cumulative, and as time goes by I'll feel better and better, for longer stretches.  

I didn't realize how much it had been helping, till I started to feel so bad again this week, lol.  But even if I feel this bad one week a month, it beats feeling like this all the time like I was, so I'll still be ahead of the game.  Seems alot of the people I am in contact with who are on Tysabri are having the UTI's and joint pain, so at least it's not just me, lol.

I really appreciate all the positive thoughts and encouragement.....you guys have helped me in so many ways.. :)  And don't worry...I'm hanging in there - Monday isn't so far away.  It's worth it to know that I may have found something to slow down the freight train.......

Bye for now,
Rita

[Deb61]

I'm glad to hear that the Tysabri is working for you--it must be a huge relief!  I know what you mean about the denial thing.  I still have some of it from time to time.  

My sister had mentioned that her infusion buddies told her the same thing--they feel horrible again the week before the infusion is due.  It must be some kind of powerful drug!  Maybe the foot pain, nausea, and other problems will disappear completely (never to return again) after your next infusion.  

Hang in there 'til Monday!

Deb

[Sunnytoday]

Rita, i'm glad that you are doing ok, and I'm very glad that you have "survived" this far!
Keep us updated!
~Sunnytoday~

[Lulu54]

Rita,
Of course we want to know.  We're all taking notes and you are one of our few Tysabri vets... yes, one month counts as experience because we're easy.  

I hate to hear the symptoms are creeping back in already but its not a surprise from reading the various information out there.  The good news is it did make you feel better, so that is promising.

Yes dear, the reality is something horrible is happening in your body.  At least you now have a fighting chance to slow it down.  

Keep us posted, ok?

my best as always, Lulu