I think I had an attack on Copaxone....
Posted: Thu Jan 15, 2009 10:37 am
Sorry gang, but this might be kinda long....
I had some kind of attack yesterday morning. I have never felt
anything like it before in my life.
I had read that Copaxone users can encounter the occasional "reaction"
to the drug, even after years of being on it without having said
reaction. It usually is described as a "flushing" feeling in the
skin, tightness in the chest, shortness of breath, etc. for short
time...about 15 minutes or so....immediately after injection, but I had never experienced anything like I did yesterday morning about 2:30AM.
I had taken 3mg of Melatonin for the first time Tuesday night because
I had read that it could help me sleep better. Who doesn't want
better sleep, right? It must have not "played nicely" with my
Copaxone, that or I just had a reaction that Copaxone users can get
sometimes or my MS actually triggered a neurological attack or
something. Whatever it was....it sucked.
4 hours after I had taken my injection and went to bed, I got up to
pee. I was already not feeling quite right with my skin tingling in a
"not fun" way. By the time I got to the toilet I was in agony.
It felt like I was a match head that had just been stuck on fire.
Every nerve in my body felt like it was aflame. I have never been
dipped in burning napalm or liquid hot magma before, but I bet thats
what it felt like. I must have semi-blacked out cause when I came to
my senses I was curled around the toilet on the cold floor with my
head hanging in the toilet bowl. I hadn't puked...but I remember
having been struck with the urge to piss myself, shat myself, puke and
pass out all at the same time during the ordeal. Lasted about 15-20
minutes I guess. The feeling was so indescribably horrible I remember
thinking to myself the only word I could formulate in my mind at the
time. "WOW!"
Luckily, I had a doctors app already scheduled for yesterday morning,
so I went in, talked to the doc about it and some other issues and he
sent me home for the day. We talked about LDN (low dose Naltrexone) and he wanted to do some blood work to check some things that might indicate if my attack was MS related or not and to get a baseline for my liver functions as Naltrexone (the 50mg dose) comes with a liver warning. He wants to monitor that closely if/when I start on LDN. Once those labs come in, he'll write my Rx for LDN. I'd like to get off of Copaxone and the nightly needles as soon as possible.
I felt like I had been really put through the wringer all day
yesterday. My feet and hands felt as though I had been walking
barefoot on hot coals or handling dry ice. I ended up sleeping most of
the day.
Back at work today...feeling much better, but still feeling kinda
shaky. I'm thinking now that it was most likely Copaxone related and
not MS related as I am not having any new or exacerbated difficulties. Just a really bad neck ache and a feeling of being really run down.
I called the Share Solutions folks this morning and told the on duty MS nurse about my ordeal. She said that what I described sounded more like an accute MS attack and not the same as the immediate injection reaction that some Copaxone users have described. My attack happened 4 hours after injection so....*shrug* Who knows what the heck happened.
It was weird. Anyone else experience anything like this before with their MS or while using Copaxone?
Is Melatonin bad to use when mixed with Copaxone?
I can't wait for the weekend so I can get some more rest.
I had some kind of attack yesterday morning. I have never felt
anything like it before in my life.
I had read that Copaxone users can encounter the occasional "reaction"
to the drug, even after years of being on it without having said
reaction. It usually is described as a "flushing" feeling in the
skin, tightness in the chest, shortness of breath, etc. for short
time...about 15 minutes or so....immediately after injection, but I had never experienced anything like I did yesterday morning about 2:30AM.
I had taken 3mg of Melatonin for the first time Tuesday night because
I had read that it could help me sleep better. Who doesn't want
better sleep, right? It must have not "played nicely" with my
Copaxone, that or I just had a reaction that Copaxone users can get
sometimes or my MS actually triggered a neurological attack or
something. Whatever it was....it sucked.
4 hours after I had taken my injection and went to bed, I got up to
pee. I was already not feeling quite right with my skin tingling in a
"not fun" way. By the time I got to the toilet I was in agony.
It felt like I was a match head that had just been stuck on fire.
Every nerve in my body felt like it was aflame. I have never been
dipped in burning napalm or liquid hot magma before, but I bet thats
what it felt like. I must have semi-blacked out cause when I came to
my senses I was curled around the toilet on the cold floor with my
head hanging in the toilet bowl. I hadn't puked...but I remember
having been struck with the urge to piss myself, shat myself, puke and
pass out all at the same time during the ordeal. Lasted about 15-20
minutes I guess. The feeling was so indescribably horrible I remember
thinking to myself the only word I could formulate in my mind at the
time. "WOW!"
Luckily, I had a doctors app already scheduled for yesterday morning,
so I went in, talked to the doc about it and some other issues and he
sent me home for the day. We talked about LDN (low dose Naltrexone) and he wanted to do some blood work to check some things that might indicate if my attack was MS related or not and to get a baseline for my liver functions as Naltrexone (the 50mg dose) comes with a liver warning. He wants to monitor that closely if/when I start on LDN. Once those labs come in, he'll write my Rx for LDN. I'd like to get off of Copaxone and the nightly needles as soon as possible.
I felt like I had been really put through the wringer all day
yesterday. My feet and hands felt as though I had been walking
barefoot on hot coals or handling dry ice. I ended up sleeping most of
the day.
Back at work today...feeling much better, but still feeling kinda
shaky. I'm thinking now that it was most likely Copaxone related and
not MS related as I am not having any new or exacerbated difficulties. Just a really bad neck ache and a feeling of being really run down.
I called the Share Solutions folks this morning and told the on duty MS nurse about my ordeal. She said that what I described sounded more like an accute MS attack and not the same as the immediate injection reaction that some Copaxone users have described. My attack happened 4 hours after injection so....*shrug* Who knows what the heck happened.
It was weird. Anyone else experience anything like this before with their MS or while using Copaxone?
Is Melatonin bad to use when mixed with Copaxone?
I can't wait for the weekend so I can get some more rest.