Tysabri - 2nd infusion

[Cosmobirdy]

Hiya,

Just figured I'd give you guys an update - I had my 2nd infusion on Nov. 4th.  (and remember, if you all are getting tired of this, just let me know - I don't want to be boring everyone with my Tysabri stuff, lol.)  

This time, they ran the infusion in alot faster - it must have only been 30 or 40 minutes.  I wasn't really paying attention, cause I didn't expect it.  I just looked up and notice I wasn't dripping anymore, and I just assumed I had a kink in the line, lol.  (The catheter that runs into your vein is tiny and very flexible - I had a little kink last time.)  No problem with the infusion....no nausea or headache this time.  I took the Claritin-D an hour before, and that seemed to do the trick!  They didn't even make me wait around after the infusion this time.  Unhooked me, made my next appt., and sent me on my way.  Sweet..... :)

I'm so fortunate that my neuro's office does the infusions, cause he starts the IV himself - and that gives me a chance to touch base with him more frequently now, and ask questions.  (I'm sure he's thrilled, lol - but he patiently answers every one.....)  I told him about the UTI last month and the hideous hip pain.  When I explained how bad it was, he had no problem prescribing me some pain meds to have on hand in case it happens again.  He said none of his other Tysabri patients have had joint pain, and he looked kind of perplexed and troubled......I just laughed, and told him my body never does anything the normal way, so he might as well get used to it, lol.

We talked a bit about the newest case of PML here in the USA.  It hasn't changed his feelings about Tysabri, and he said that he feels there will be more cases popping up as we go along.  His thoughts are pretty much like mine - as you get more and more people on Tysabri, we will see more and more PML cases, as well as other serious infections and side effects.  He said people will just have to accept these things as very real possibilities when they go on these medications, because they are so strong, so new overall, and it is hard to predict how each person will react.  It's nice that he will always tell me the truth about these things - that is very important to me... :)

Two days after the 2nd infusion, I got wicked sick.  Started with the nausea and being worn out....the next day, the nausea was alot worse, and I wound up with one of the worst cases of diarrhea I have ever had.  Ran a low grade temp and felt horrible - like I had been hit by a truck.  They actually sent me home from work 2 days in a row - which is unheard of for me.  Apparently, I looked as bad as I felt, lol.  I have not missed any time for any of this, except the week back in April, when I was so exhausted I literally could no longer think or function.  Otherwise, I have gone in every day, no matter how bad I felt...nauseated, vomiting, in pain...more times than I can count I have cried on the way into work cause I was so exhausted and felt so bad I didn't know how I was going to make it thru the day, and be able to hide how I felt from my patients.  But I always made it.....so to get sent home was a big deal, and very frustrating.  

Took a total of 5 days to get over it all the way.  I'm assuming it was just some bug I got exposed to, that hit me much harder than it normally would have because of the Tysabri.  Have had a little more zip the last few days, till early afternoon - then I crash and burn, lol.  I have had some new stuff crop up the last couple of days......new tingling in my toes and my right flank and hip, numbness in the soles of my feet returning.  Now since yesterday the pain in my feet is back, and the pain in my left hip is starting again.  I took a pain pill yesterday and this morning, cause if I can head it off or keep it to a dull roar, that's what I intend to do... :)  The swaying thing increased after I got sick, and is still stronger than it has been in quite some time.  Also alot more tingling in my legs than I have had for quite some time...

So, we'll see what the rest of the month holds... :)  I'm trying to be as detailed as I can about it all, for anyone who is considering Tysabri now or may need to in the future.  Truth in advertising, lol.  I am still very optimistic....it's still really early in the game.  Just keeping an eye on the new things - not sure what that is all about.  Hopefully just kind of a fluke....

I'll check in again in a week or two and let you guys know what's going on.  Hope you all have a great weekend!  Bye for now....

Rita

[Deb61]

Hang in there!  This is a terrible time of the year, as you know, for bugs, and you're more likely to get them being on Tysabri.  I sure hope that the possible bug that you had didn't cause a relapse!  

Does your pain medicine pretty good?  I wonder if it could be spasticity?  I know my hips will hurt at night when the spasticity is bad.  

My sister's brain MRI looked good, even though she's not doing (if that makes any sense).  She was recently diagnosed with RSD (but has had it for years--before the Tysabri), which is causing problems her tremendous pain in her foot (hence the reason for her miserable fatigue, heat in the foot, and nausea from the pain).  But the good news is that the Tysabri appears to be doing its job.  

Hang it there!  I'm hoping the Tysabri will "kick in".

Deb

[Wobbly]

I think it's good to hear all the information we can and to learn from it...so take care and please do keep us updated...

thanks
wobbly
undx

[Lulu54]

Rita,
Thanks for sharing the good, bad and ugly here.  As we have discussed over and over and informed patient is the best kind and some of these things we can only learn about through other's experiences.  Thanks again and be well, Lulu