Lemtrada Round 2

[Starla]

Round 2 starts tomorrow and I’m dying to just get it over with and am dreading it at the same time. I absolutely hate the recovery time and feeling like a useless blob for weeks.

Last year I didn’t exercise or anything
before round 1 and it took me 5 weeks to recover. This year I’ve been exercising regularly and eating better so I’m hoping that and less days of treatment will shorten the recovery time. Fingers crossed.

I feel anxious and stressed and emotional. I just need it over with. I’ll post more about my round 2 experience after tomorrow.

Starla

PS: JerryD, do you have your round 2 booked yet? I’m pretty sure you were the week ahead of me last year. Good luck to you with yours as well!!

[pb909]

My recovery was quicker after round 2.
I was hit with a bad year1 Solumedrol rebound, but year2 was ok. Think it was due to the reduced amount administered during the year2 3-days.

Best wishes to you and for a shorter recovery time...keep us posted.

[Starla]

Thanks pb909. Good to know. I figured it would be less recovery due to the less days but it’s nice to hear it from someone who’s been there. Can’t wait to just get in there tomorrow morning and get it over with. I’ll keep ya posted.

[JerryD]

Hi all,
I've been watching a lot of 'I Love Lucy' and 'Gomer Pyle, USMC' re-runs and have neglected to check in to this site, regularly!
Starla, I will start my Lemtrada round 2 next Monday. I hope it goes well for you and me, both !
I have many questions about this stage of the treatment and forever after ! I haven't heard anything about any other former MSers that received this treatment in 2014, 2015, 2016 . What has become of them? Am I to believe that after round 2 of Lemtrada I will be able to walk, ride my bike, swim and ski, again?
Good luck, Starla!

[alk]

I'm a year and half post round 2 and doing great. You're right, I feel great and as a result I don't think to check these message boards.

Round 2 recovery was not nearly as hard for me as round 1. I think it's a combination of feeling like I knew what to expect since I had done it before and it was only 3 days instead of 5.

Good luck on round 2! I hope it goes well for you as it did for me!

[JerryD]

Thanks for your response, alk. I guess that there is no reason for previous Lemtrada patients to share their experiences, good or bad, with any others. And so it goes ! Again, thanks for your response. Good luck

[dastardly]

Hi Guys I had my 2nd infusion I think it was October the second was a lot easier to handle then the first for me, and no "rash" (I hope I don't get shingles again)

As for walk, ride my bike and swim well nothing has changed for me, no miracle, im selling my motorcycle as I have come to terms with the fact that I will never ride again.

I have another MRI today as my symptoms are getting worse, the doctors feel that I have had another flare up, I guess I will find out soon good luck Craig

[JerryD]

Many thanks to you, Craig from down under . I hope that your MS gives you a break, soon.
I have been feeling ok since my 2nd round, 3 weeks ago. I would still like to hear some reports from any Lemtrada patients from 2014, 2015 or 2016 ! Is that too much to ask ?
Good luck

[pb909]

Yes - it's been slow.

I'll post an update after my next Dr. appt early April since I haven't posted an update since June 2017.

My treatments:
- July 2015 year1 5 dose treatment
- July 2016 year2 3 dose treatment

[JerryD]

Thanks pb909! Oh boy! Somebody is reading these posts !

[jllandryusa]

JerryD,

I had my 2nd round the 1st week of Oct., 2016 & have 'good, bad & other' experiences to share. Overall I will say that I am still glad I did it & only wish it had been available to me earlier in my MS journey. I will start a new thread with more detail.

Jen

[JerryD]

Thanks for the response, jllandryusa. My main concern is did the treatment stop your MS progression? ! That is the purpose of the treatment. Isn't it? Will I get some relief from the constant worsening of my balance, strength, etc. That's all the answer that I need! Good luck