In the weeks after Lemtrada??

[cali1892]

Have others felt crappy? And for how long?

I had my infusion the week of Feb 22-26. I had headaches the first few days and my blood pressure was thru the roof. Probably from the solumederol. But otherwise no other side effects. It's been fairly uneventful since that week. My blood pressure has stayed high. Which we have increased my meds for that. A few times I felt tired, but the past three days seem to be getting worse. I'm so fatigued. Just unwell feeling. Is this normal?

Also, it was mentioned during the infusions that we should be careful around sick people and places like Wal-Mart. (I'm guessing they were referring to the germs on the cart handles.) How long are we susceptible to getting sick?

[pb909]

re: feeling crappy:
it took me about 7-10 days to get back to my pre-lemtrada condition - I was so weak and tired and was warned this is common mostly due to the week of Solumedrol. Since then I have been level/unchanged so that's good that I've had no further noticeable disability progression. My treatment was in July 2015.

[alk]

Hey, I'm in Alabama too!

I had a rough month or so. Each week got a little better. I had bad headaches during that time. Most of them could be knocked out with caffeine and pain killers. I had one last 4 or 5 days. Later when I told my dr said I should've called because they could've broken it up with steroids.

It's only in the past month that I really have started to overcome the fatigue. I was told that 20% feel that way.

I hope you start feeling like yourself soon.

[BadAttitude]

You just hang in there Cali. I felt like hammered dog poop the first two months after, but then, when I went in (last March, 2015) I went in while having the worst relapse of my life. So the accompanying high-powered five days of Solumedrol blasted that relapse out like nobody's business, thank God. It was awful but I was so lucky that the Lemtrada happened to have gotten scheduled right about the same time the MS tried to kill me.

I was able to recover from the relapse and get the preventative benefits of the Lemtrada afterward. I just got done with my second round of Lemtrada yesterday, and it was alright. Just three days this time, and they improved the process. Streamlined the infusions down to only one IV in one arm, changed the administrative status to actual "outpatient" status resulting is lower costs, and kicked me loose with everything I needed and nothing I didn't. The days were shorter too.

It was like having a mini-spa vacation, lol. I got some reading done, had some nice conversations, lots of rest....I could get used to this, lol.

[Carolinemf]

Thanks for sharing.
Going through the worry of having to consider starting Lemtrada and appreciate reading about others experiences.