Second Lemtrada infusions pending...what to expect?

[BadAttitude]

Hi, everybody. Hope you are all doing well. I am doing fairly well also, due to last year's Lemtrada infusions. And now, the second series of infusions (3 days) is looming on the horizon. I am scheduled to go in on March 29th, 30th, and 31st. I'm wondering how the infusion protocols vary this time around.

The first time, the hospital that I received them had me in a regular hospital bed for eight hours each day, one IV per arm...steroids/benadryl/Tylenol, etc. in one IV, Lemtrada in the other. The Benedryl mostly knocked me out for the better part of each day. This time the hospital (same one) has restructured its facilities and calls it an infusion center. On the patient portal where they enter future appointments, mine says I am scheduled for "chair 9."

I'm wondering if Chair 9 is anything like the recliners they had me take my Tysabri infusions in at my doc's office pre-Lemtrada. Those chairs (not to whine) hurt my back and I couldn't wait to get out of them after two hours. If they think I'm going to last eight hours in something like that, they're going to be treated to a very uncooperative me. Assuming I am able to stay awake, I and my infusion stands will wander the halls. I may visit other patients, I may sing, I may lounge in the cafeteria and inveigle captive audiences with personal tales of woe and my mispent youth, I may proselytize for my favorite political figures. I just can't predict what will happen.

Has anyone here had the second round of infusions yet? Were the same drugs administered along with the Lemtrada? Was the facility administering the meds just as strict about releasing patients only if they had another person to drive them home? I haven't made arrangements for someone to pick me up on the third day but I am considering checking myself out at the end of the day regardless of medical advice and driving myself home. I felt fine last year with the exception of the dizziness and balance issues the relapse I was experiencing at the time caused, but this year I have no relapse (thanks, Lemtrada!) or loss of balance, and no reason I can't drive.

[pb909]

Have not seen any posts with round 2 updates. Might be that it was U.S. approved late 2014 and the pre-registration process took awhile to complete to get the first dose. Maybe we are just coming around to the 1 year mark.

I had my first 5 dose treatment July 2015 and have a thread going of my adventure. I'm hoping others will update if/when they go thru the second treatment and why they took it since it's my understanding it's not mandatory.

[BadAttitude]

Heh. Mandatory. Funny thought...like they will MAKE me take my medicine, lol. I'm not only willing to take the second round but I'm bugging THEM to get it done.

I just was under the impression that since this was the way the trials were run initially two doses is expected practice and recommendation...two rounds of infusions a year apart are the recommendations of my neuro. I've even read where there have been instances of three rounds of infusions for particularly obnoxious cases.

[pb909]

Yes I realized after I posted the word "mandatory" that it was a poor choice since only we choose what treatments we decide to use or decline.

My neuro is open on the second round and has been evaluating my progress periodically. He also mentioned the third year as well as a possibility.

[BadAttitude]

Good report!

Yes I realized after I posted the word "mandatory" that it was a poor choice since only we choose what treatments we decide to use or decline.

My neuro is open on the second round and has been evaluating my progress periodically. He also mentioned the third year as well as a possibility.

Third year would not be ideal, I think. If I recall correctly, there were some of those occurring overseas when the treatment first hit their market....but it was not expected nor hoped to become a routine thing.

So. I have finished the second round of Lemtrada. It was smoother than the first round. No adverse reactions with the exception of some iffy moments whenever they injected the Benadryl into the line. If they went slowly, it didn't hurt, but the first time they did that it felt like a freight train landing on my chest. It also induced dizziness, big time. But since I was sitting down at the time, it was akin to when you get tipsy, lie down on a bed, and get "bed spins," lol. No big deal.

The first time I underwent Lemtrada, they ran two infusion lines, one in each arm, to handle the Lemtrada in oneline and all other meds in the other. This year, they hooked up one infusion line, used a red scanner light to find my buried, uncooperative little veins, and in one smooth jab hooked up a line with a deep vein in the arm that no one has ever managed to find a vein in. It was even more efficient than their "IV team" that did nothing but IVs and ports hospital wide. Then they used the same IV for all meds, using branching feed lines into the main IV.
It was a lot less wear and tear on me, and I really appreciated the improvement.

Also this year, instead of a hospital bed, they had me occupying an infusion chair, a kind of La-Z-Boy Recliner with lumber support and complete lying flat capability. It was a nice development and my back didn't hurt like the Tysabri chairs used to. Three days is preferable to five days, IMHO. I did have to cover the unsightly IV site with a bandaid before leaving my house this morning to go talk to an employer so they didn't jump to the conclusion that I am an heroin addict.

So I'm home now, much less the worse for wear, and I am now working on finishing out my six days of steroids taper. For some reason no one ever articulated to me, the requirement to continue prophylactic antiviral meds (Cyclovir) went from two months long after Lemtrada to an entire year this time, even though I tested negative both times for any viral infection. I asked a couple people why it changed, but no one knew, and my neuro never made it in to talk to me before my three days was up. I can only hypothesize that maybe my risk factor increased if the Lemtrada effect on one's immune system is a cumulative thing, so it is a precaution against that increased risk?

All in all, a much improved experience. The first Lemtrada infusions were a success when the accompanying steroids shut down a vicious relapse in a happy coincidence of timing, and so far the Lemtrada seems to be tamping down MS activity since last year. No relapse this time, just lingering symptoms from the last relapse, but I'm still hanging in there. Things are looking up...as long as I can rein in these ferocious steroids hunger pangs. Nom, nom nom! All I wanna do is eat now. Yikes!

[pb909]

Sounds overall like a good experience on round 2.

My treatments were done with 1 IV. I'm still on Valtrex/Acyclovir 8+ months later, Dr did tell me it'd be 9 months to a year on it. My infusion center has recliner chairs so it makes for a long day especially after 8 hours. It's the same place I had my Tysabri and it's part of my neuro's office.

Hopefully there is no "hit" coming of the Solumedrol - my first treatment was bad for about 7-10 days to feel normal again.

Thanks for the update.

[alk]

Hehe I'm enjoying this conversation. Badattitude, your tales of woe sound fun but I'm glad you got a good chair.

I hope they don't change the antiviral length. I just barely made it through two months.

I have a love/hate reletionship with steroids. I'm wondering if that's more of a rollercoaster than the Lemtrada has been.

[Goldfinch]

Update 2

Had six month MRI done with and without contrast this morning. Report from radiologist: no new lesions. Report from patient: No new symptoms. Possibly improved symptoms with regard to balance.
So...Lemtrada appears to be doing its job so far. Yay!

[sandwich]

Great news.
I'm in the UK and finished my second course last month. I've only been given a 30 day supply of anti viral so would be interested to find out the rationale behind taking them for longer.

[Carolinemf]

Thanks everyone for sharing your experiences .
I am in the process of deciding to take the plunge in to Lemtrada and appreciate any n all info.

One of my main concerns is the steroids that go hand in hand with Lemtrada.
I really feel unwell on them and have avoided taking as much as possible.
I am going to discuss the dosages and duration of taking them with doc and ask about possible reductions.
Has any one else had this concern?
Coping strategies?
all the best