TYSABRI SLUMP WEEK...???

[Dreams008]

I'm about to get my third infusion next week Wednesday. I'm actually going to see if I can change it to Monday. I heard the week prior to your next infusion can be pretty rough. If it wasn't that I've only had 2 infusions, I'd think I have PML already. I am so weak, feel like I have vertigo, though the room doesn't spin. My head feels so funny. Like I'm in a tunnel. My walking is bad as it is, but I can hardly function like this. I'm exhausted. Last night I was so tired, I felt as if I had taken 30mg of Xanax. Driving is a no go, as I don't feel focused. I am not having a relapse, as I'm PPMS, and MRIs never change since 2012, but symptoms get worse quickly. My neuro wants me on Tysabri to hopefully slow down any more progression. We're trying out 6 mos to see if any improvement or leveling off. So, I know it's not a relapse. Does anyone else feel really off the week before their next infusion??

[Dreams008]

Out of 51 people, I'm the only one who feels this? Need some input, please.

[ru4cats]

Whoa, Dream008! I'm off to my 58th infusion tomorrow, and I did feel "off" the week before my next infusion for the 1st 6 infusions, but I never experienced everything you described. Of course, from your description of your MS, you're in dire need of Tysabri to see if it stabilizes your condition.

It does take 6 months of infusions for your body to reach the "saturation" level you need to begin seeing stable improvements. You should also see less of the "Jonesing" the week prior to the next infusion.

If I were in your situation, I'd try to give it at least six months to see if there is a stabilization of symptoms. You know right now the week before will be dicey, but give it a try. Ty has been really good to me, but I'm not PPMS.

[Dreams008]

Thank you for your two cents. Wow...58. Are you JC+?

[ru4cats]

No, I'm JC-. However, knowing what I know about the power of Tysabri, I imagine even if I seroconverted, I'd still stay on Ty and just do heavy duty monitoring of my titer index. Right now it is the biggest gun out there, and I want it on my side! . The RRMS Center just had their latest conference, and I just watched the latest videos on YouTube. Ty is still #1, especially if you're JC-. More drugs are in the pipeline, but it will be a couple years for approval. Interestingly, all the new drugs with the greatest efficacy are infusions..... Good luck....I hope Ty helps you.

[RockysMom]

Had my second infusion today. Had a very rough week this week. Hoping next week will be better as I'm in rehab. Fingers crossed.

[lindaincolorado]

Hi Dream008, I have had somewhere around 100 infusions
Oct I started my 9th year
I cannot remember exactly, but I think for about 2 years I was jonesing for me next infusion, my body wanted it's med.
I didn't experience all that you have, but my sx started to kick in.

About 1 yr ago I went from jcv-to indeterminate. Neg is .2 or less and pos is .4 and above.. my titers have been .23,.27,.24 an now .25 I am now getting my infusions every 6 weeks-I did this in the past for almost a year.

Good luck !

[pennstater]

I am on #27, still JC-. I still get slump week, but is not as bad in the beginning and actually lasts only 3 days or so now. I didn't have it as strong as you did, but my symptoms increased, but think it was due to increased fatigue. I didn't realize Tysabri was used for PPMS.

Good luck to you.

[DonnaD]

When I started tysabri I had read here about feeling weaker the few days before the next tysbri dose (i'm up to #38 now) so I mentioned to my neuro that I felt weaker before, he said it's in my head. He said it's not the type of drug that is influenced by the day I take it. He said it builds up in your body and the end of the month makes no difference.

[Mimi K]

Slump week

In the beginning I noticed the slump week but only because I felt wonderful after getting my infusion. I had more energy which helped me walk better. The week prior to getting my infusion I just adjusted my schedule to take it easy .

Six years on tysabri and I would not want to do anything else.

[LL60]

Dreams008 -

People often talk of feeling "due" before the 28 days come around. I barely can make it though that last 5 days or so. But over the years I learned many tricks to help get though that last week. I beg to differ with the physician who said it is all in my head. When I had to skip a month due to losing my hearing because of MS and was on a high dose of steroids, it took me 3 months to get back to where I was before I skipped the dose.

Due to having high titer numbers, I went to dose extension, and was getting infusions every 6 weeks instead of the normal 4. It did not work out for me. Instead of dealing with a few off days, I was having to deal with 3 off weeks. I had to start on other meds just to get thought this time; then symptoms began to come back that I hadn't seen in 6 years.

I have since gone back to the every 4 week schedule, and once again, it has taken me 3 months to get back to where I was.

So, for me - I would say - YES, the last few days before an infusion can be rough. I hope it gets better for you as it did for some. For, me that just hasn't gone away. I have had 71 infusions. I have been JC+ the whole time. I have high titer numbers that go up and down. I am on antivirals and was just tested last week and we will see if being on them has helped any. I also had the new test done that shows I am not at risk for PML.

Have patience if no one answers a question right away. People don't post here as often as they do on some other sites. A lot of people no longer posts here. There are lots of web sites for people with MS. I'm not someone who spends a lot of time on computers and hate that you have to remember passwords to everything, so I pretty much just stick around here. I pick some great information here. I hope you find it helpful too. Hang in there. Most say it takes 6 months to get relief and that's about the time table it took for me too. You have little risk the first 12 months, so maybe think about giving it the full year.

Good luck.