I'm sorry you're feeling so cruddy on this. I usually "crash" hard about 5 days before my infusion, and it takes about a week to ramp up to a reasonable feeling. After talking to lots of different Tysabri users, I've found the feelings around this DMD are as varied as the MS symptoms are from person to person!
Thanks guys. Interesting comments. Am going to do one more and see if the after effects change. This month will be less stressful than last, in case that played into the mix. I have felt really good this week, of course, that issue clouded by having been on antibiotics all week. Will keep everyone posted!
Sorry you are having to deal with feeling crappy. Hopefully it is something else, and not really the Tysabri. Has this happened every time you have had an infusion? You mentioned you were on antibiotics - if you've been sick or had an infection of some sort, that could definitely be a big part of how you are feeling. I know the longer I'm on Tysabri, it seems I get sick easier - and when I do, it hits harder and lasts longer than it used to.
Like GG, I used to crash about a week before my next infusion, but after about 6 months or so, I never noticed that any more. Now I'm just real tired all the time - I wish I could get that sort of energy spurt after my infusion again, lol. Have you had any other side effects with the Tysabri?
Hang in there, and I would at least mention it to my neuro to see what they say. Good luck with your next infusion, and definitely keep us posted on how you are doing...
was this your first infusion?
yes, i feel even morepoorly after my infusions. Headaches, neusea, big fatigue, etc. I never felt good before, butI had hiigh hopes to have the energy again. I have 18 and ready to have an update appointment. Last appt w/neuro only wanted me to have that many. I do not know what will be next.
If it is youur first, try to hang in there for a few more, things could change.
take care, amo
I think you are right and am going to give it another try. I did have a ton of stress going on at the time and am hoping that was the main cause. This week I have felt better, which was week #3.
Neuro called this morning and they are going to put me on a steroid infusion before my Tysabri next week to see if that eliminates the side effects I was having. I thought she said Decadron, at least it sounded like that on the voice message, my phone won't let me listen to the message twice.....
beautiful day here, sun is shinning.........have a good week-end everyone
Back yesterday for Tysabri #2, which went better I think. They added Decadron prior to the infusion. Had my LP, blood drawn, yes, and now wait. Hope that's all the hoops he wants me to jump thru. Was amazed at how simple the LP was, he's definitely good at it. BP now up unusually high since MRI with the pacer, sure they will claim no relation but still............have a call into the cardiologist...........yikes we should have all of these docs on speed dial!
Have a good week-end everyone
Yup - have been feeling crappy and kinda guilty cos everyone else is saying they feel better. I must just be whining! But this made me feel better mentally at least - am nauseous, tired, lightheaded and still achey and buzzy and pulse-tingly.
I only periodically get the toe pain and hope that permanently goes away while on TY. Yes, that HURTS. I describe it like after your toe/finger get slammed in a car door. That pressure. Kinda. Impossible to explain this stuff.
I had my 1st infusion 10 days ago. On 3rd day after infusion experienced increase numbness, stiffness & heaviness which has not resolved. I will notify my Neuro. I've been hoping it clear up quickly but has not been the case. my daily activity cut in 1/2, it was already low to begin with. This *****.
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