All,
I am hoping this post helps someone or even encourages some additional sharing about Lemtrada. I have had my fill of Goole reports of the FDA w/ Lemtrada finally approved in the U.S., as well as the black box warnings( I get it.).
It has been hard finding the real experience of people taking Lemtrada. When I asked my docs they were very vanilla in their responses...everyone is different...Agreed, but give me something besides getting a rash. So here is Day 1 for me.
I had 1000 ml of Solumedrol, 20 ml of IV Pepcid and 50 ml IV of Benedryl ( which knocked my socks off). I slept for the next two hours, only waking when they had to show me the Lemtrada and I had to verify my name DOB, RX And dosing.
All was humming along until the 3rd hour. I started getting incredibly warm, face and ears on fire and tightness in my chest. They immediately stopped the infusion, flushed me on saline and called the doc. They gave me 25 ml of Benedryl, and gave me cold washcloths for my forehead and neck, plus a little fan. I was still warm, but not as much. My temp was 99.4, which for me at 97.5 spells a slight fever. They restarted my Lemtrada after 20 min. and then came the Migraine. Right at the end of the days infusion, w/ 2 hours of observation I started with a headache that progressed into the worst migraine I have had in a long time. They gave me 100 mg of fioracet and I drank a ton of caffeine. It got rid of some of it, but the edge was still there. 3 hrs later I took an Excedrine Migraine (at home) which helped, took away the edge, but the headache lingers, which has made me nauseous and quite miserable. I also have pain in my joints and neck. Chest tightness stopped after about an hour on the flush. They are attributing this to the Solumedrol, although this has never happened to me in the past w/Solumedrol . And chest tightness although down on the list of side effects does exist for Lemtrada.
So, this was Day 1, not designed to scare anyone, just give one person's perspective and experience. My docs did downplay the side effects like it would be"easy peasy". Then again, I was told the same thing about the PLEX treatment, and there was nothing easy peasy about that. The rash was the Main item mentioned over and over. 53% in one of the trials, Headache is 52%.
There were pros, 3 hours did go well. My hope is tomorrow we can have a better plan before we start based on today. I learned today, absolutely make sure you speak up and don't worry about it. The nurse said I did the right thing telling her and not to hesitate doing so.
Sorry for the long post... I really hope it helps someone out. I do believe this drug will work...it just takes some time and perseverance.
Best to everyone,
Wellnesschic
I am hoping this post helps someone or even encourages some additional sharing about Lemtrada. I have had my fill of Goole reports of the FDA w/ Lemtrada finally approved in the U.S., as well as the black box warnings( I get it.).
It has been hard finding the real experience of people taking Lemtrada. When I asked my docs they were very vanilla in their responses...everyone is different...Agreed, but give me something besides getting a rash. So here is Day 1 for me.
I had 1000 ml of Solumedrol, 20 ml of IV Pepcid and 50 ml IV of Benedryl ( which knocked my socks off). I slept for the next two hours, only waking when they had to show me the Lemtrada and I had to verify my name DOB, RX And dosing.
All was humming along until the 3rd hour. I started getting incredibly warm, face and ears on fire and tightness in my chest. They immediately stopped the infusion, flushed me on saline and called the doc. They gave me 25 ml of Benedryl, and gave me cold washcloths for my forehead and neck, plus a little fan. I was still warm, but not as much. My temp was 99.4, which for me at 97.5 spells a slight fever. They restarted my Lemtrada after 20 min. and then came the Migraine. Right at the end of the days infusion, w/ 2 hours of observation I started with a headache that progressed into the worst migraine I have had in a long time. They gave me 100 mg of fioracet and I drank a ton of caffeine. It got rid of some of it, but the edge was still there. 3 hrs later I took an Excedrine Migraine (at home) which helped, took away the edge, but the headache lingers, which has made me nauseous and quite miserable. I also have pain in my joints and neck. Chest tightness stopped after about an hour on the flush. They are attributing this to the Solumedrol, although this has never happened to me in the past w/Solumedrol . And chest tightness although down on the list of side effects does exist for Lemtrada.
So, this was Day 1, not designed to scare anyone, just give one person's perspective and experience. My docs did downplay the side effects like it would be"easy peasy". Then again, I was told the same thing about the PLEX treatment, and there was nothing easy peasy about that. The rash was the Main item mentioned over and over. 53% in one of the trials, Headache is 52%.
There were pros, 3 hours did go well. My hope is tomorrow we can have a better plan before we start based on today. I learned today, absolutely make sure you speak up and don't worry about it. The nurse said I did the right thing telling her and not to hesitate doing so.
Sorry for the long post... I really hope it helps someone out. I do believe this drug will work...it just takes some time and perseverance.
Best to everyone,
Wellnesschic
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