Feeling achy and fatigued since 1st Tysabri dose

[CougarMama]

I have not been feeling well the last couple of days and I was wondering if this might be from the Tysabri. I had a headache, was very sleepy and ached for about 24 hours after the first infusion.

Then I got the energy that I have seen mentioned in other posts for about a week but I'm feeling fatigued and achy again. I do not get my second dose until April 10th. Any suggestions?

[CougarMama]

I wonder if it could be the mild fever that I have?

[lindaincolorado]

Hi CougarMama, sorry you are not feeling well
I have not had side effects other than a slight headache 2 or 3 times out of 66.

You might want to go to the Tysabri site, read up on side effects ?? Maybe you have the flu ?

Take care and hope you are feeling better

[CougarMama]

Thanks!

Hi lindaincolorado! I've definitly had a better day today and have not felt as bad as yesterday. It never even entered my mind that it could be anything else until the fever appeared. Talk iabout losing perspective!

Also, I wanted to mention that I have found the information that you have provided on Tysabri and your experiences invaluable. I'm sure I'm not the only one!

Be well?

[aimeemurf]

Feeling achy & fatigued...

I've been on Tysabri for a year, & I am always tired & 'knocked out' that evening & sometimes over-fatigued the next day. Then I feel "normal" until I start getting more fatigue right b4 the next infusion. I kinda schedule workloads around infusion time.

[Scooter24]

Have you tried taking a clariton before and for a day or so after? both infusion centers I have gone to have offered or recommended it. I haven't had to use it myself. I start jonesing a day or 2 before and felt 100% the day after my infusion. I have my 24th on the 10th.

[CougarMama]

I have not tried the Claritin, maybe I will take this with infusion #2. What is it supposed to help with? The aching, headaches, what?

Thanks!

[Scooter24]

They say it helps with any type of flu like symptoms.

[CougarMama]

Well, I'll take any help I can get. Thanks!

[0485c10]

long response please read until the end..

hi cougermama,

i'm a problem solver and and a linear thinker..connect a to b to c sometimes it takes a long time to get any thoughts out because i don't have short thought. i have linear connected observations about most topics...here goes not necessarily in order by date:

1. first 6 months were very fatiguing as you say. I almost fell asleep driving home.
2. learned if i was well fluidized before infusion it was better.
3. learned that, when they they told me my BP before every infusion and i noticed it was 20 points lower than normal for me.
4. i knew i was restricting fluids because of incontince and being able to sleep through the night..probably that was what was causing the low bp & fatigue?
5. Restricting fluids never was a problem before i used tysabri but it became an issue after? i think tysabri just requires a person to drink more fluid(not more coffee because that dehydrates, i think tysabri does too?)
5. drank more so i was well fluidized before infusion, bp came up and fatigue lessened.
6. switched infusion centers, new infusion center ran a small bag of saline after the infusion and i think that helped too.

7. read a post from someone using cellcept and that person wrote after the infusion a person needs to drink more to flush out the system or they will feel off for quite a while....maybe tysabri is like that too? maybe its not being well flluidized before the infusion but drinking more after the infusion??? IDK, could be? Try it and report back.

8a. Recently became frustrated with the extra time need to run the bag of saline after tysabri, 20 minutes, so i requested it be stopped when my BP was normal for me. Plus i no longer have an issue with incontinence so i don't restrict fluids any more.

8b. Recently requested to go from 4 week infusions to 6 week infusions for multiple reasons...i dislike the time it takes for the infusion every month--i like month & 1/2 better than every month. It might lessen the PML risk + i like 6 weeks better than 4 weeks. i don't like being over medicated, i only want to use the minimum amount I need. and i wanted to find out what that was for me

8c. At both changes I had a return of the fatigue i experience 3.5 years ago. Tysabri is a med your body needs to get used to and know when to expect it. if you change you tysabri routine there will be fatigue for a while until your body gets used to the new routine and can expect the new pattern

good luck. for me it was fluid and my body getting used to a tysabri routine.

[0485c10]

one of the symptoms of dehydration--which most people with ms tend to be slightly because of the continence issue is achy muscles. not saying all of the aching muscles a person with ms has is from fluid, i'm sayning it can be a contruibuting factor that makes it worse.

i'm finding a suppliment of potasium helpul when my muscles get achy.I get it at the grocery store. it's a mineral used for fluid distribution.

it is considered to be an important to regulate electrolyte balance of fluids inside and outside cells including in the blood. particularly important to heart,nerve, and muscle health and to balance water in the body.

i take it in the morning or early afternoon or wait until the next day to take it when i have aching muscles ar predict it will happen that day.. if i take it before bed, it sometimes makes my heart pound more as i try to sleep. aching muscles at bed time are tylenol, ibuprofin or gabapentine..not potasium at bed time. potassuim when i will be more active during the day..

[CougarMama]

Thanks, 0485c10. I could see how both the potassium and water could help. I have infusion #2 tomorrow and am going to try a Claritin, an ibuprofen, lots of water before AND after and a banana for potassium. I also have arranged to go to bed as soon as i get home, which i wasn't able to do last time.

I'm a bit concerned because of the aches (which are still with me) and I now have a sore throat. No repeat of the temperature so I'm hoping it's just allergies. I've felt worse this month then normal so I'm hoping to see an improvement in month 2. Thanks for all of your suggestions.