OMG I can't decide which is worse. Posted: 07-03-08 21:07pm
I was dx'd two days before chiristmas and
I've been on avonex since January of this
year. I do not get my shot every week,
mainly because the side effects I get can
only be described as "pure hell". Chills,
tremors, muscle oversensitivity, aches
like someone is drilling holes into my
bones, and my muscles ache so much a
simple hug from my children brings me to
tears. A few weeks ago I had thought that
a nice hot shower may help the muscle
aches, but it only took about 10 seconds
in the shower for me to get out because it
felt like someone was stabbing me with a
bunch of little knives.
Well, lately I have been having blackouts,
i'll be out for a minute or so, then wake
up, not know where i am, what i'm doing,
ect. My family says it's because i'm
missing my injections. So, my mother and
husband have now decided that I cannot be
trusted to make my own medical decisions
regarding this and are now MAKING me take
it every week. Now that's fine and good,
whatever, I know deep down they're only
concern is me, but I have 2 small
children, they need mom, not 5 or 6 days a
week, but ALL week. My husband sees how
bad i feel, but does not hesitate to still
ask "honey, what are you making for
dinner" or "can you get me a beer?" while
i'm curled up in a fetal position, shaking
uncontrollably, buried in a mound of
blankets.
I just don't know what is worse. With the
ms, I'm exhausted all the time, no matter
what, the doc gave me provigil, but it
doesn't work. With the avonex, i feel
like hell and am still exahusted. Any
words of advice?
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nicolebp
New User, Becoming EHEALTHy
Joined: 23 Aug 2008 Posts: 1
less common side effects Posted: 08-23-08 20:27pm
I just took my 6th shot of avonex. I've
basically gotten used to the flu side
effects and they have gotten better with
time. But as someone else mentioned in
this thread, I have a strange muscle
soreness, fatigue and just generally
feeling crappy for a few days after each
shot. I also have noticed very strange
abdominal problems since I started the
meds. without giving TMI, I have what
feels like a very minor stomach flu for a
few days after the shots, lots of stomach
pain, etc. Anyone else experiencing these
side effects?
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MSBengal
New User, Becoming EHEALTHy
Joined: 16 Sep 2008 Posts: 3
My Avonex Side Effects: Posted: 09-16-08 22:29pm
I started my injections (.50) 3 weeks ago
and have been able to manage the side
effects so far. They can be wicked, so I
would advise anyone to make sure you drink
lots of water during the day and MAKE SURE
YOU TAKE ALEVE!!!!! It really helps me. I
take 2 of them just before the injection
and then take another one about 5 hours
later because the Aleve wears off at about
the 5 hr mark.
When I do sustain the full brunt of the
side effects (when the Aleve wears off), I
take a hot shower. That seems to slow the
brutal chills and dull the headache. Other
than those, I don't seem to get any other
effects. I am wondering if it initially
triggers some of my ms symptoms because
right afterward, I seem to get a small
burst of my ms symptoms. It then goes away
within an hour or so.
Good luck to you
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mlittlefield
New User, Becoming EHEALTHy
Joined: 17 Sep 2008 Posts: 1
Been on Avonex for a year+ Posted: 09-17-08 18:02pm
I have read all the above posts from other
people and I am very sorry to hear all the
terrible side affects they get from
Avonex. I only once in a great while get
a fever in the middle of the night but 2
tylenol take it right away. So far so
good for me. My mother on the other hand
also has ms and has had it for over 20
years but really been diagnosed for about
4-5 years and ever since she started
avonex 3 years ago she has only gotten
worse. She insists that its the avonex
that made her worse because well before
she went on it she was fine. Now she is
at the point where she has to use a cane
to walk and can't even drive. Does anyone
feel this way about avonex? If so, this is
not something I want to be on.
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brooklynms
New User, Becoming EHEALTHy
Joined: 28 Sep 2008 Posts: 1
On Avonex for 8 Years Posted: 09-28-08 16:46pm
I just discovered this site and felt
compelled to post. I was diagnosed with
MS 8 years ago and went on Avonex within
the first 3 months of my diagnosis.
The first injection was rough and it took
me about 6 more months to get up the nerve
to inject myself. I made an immature
decision to go off the medication for
about a year and a half and I ended up
having a minor relapse in the form of
optic neuritis about three years ago. I
went back on Avonex at that time and I
have been on it ever since.
I have taken breaks (e.g. when I travel)
but I have found Avonex to be manageable.
I have only experienced the flu-like
symptoms and I tend to be a bit "hung
over" the day after, but that's it. Once
in a while, I have difficulty sleeping but
I can't be certain that is definitely
Avonex related.
I have fallen into a medicine routine. On
Sunday, I clean my apartment, change the
sheets on my bed, eat a nice dinner, take
the medicine and eat some ice cream, brush
my teeth, and go to bed. It's small, but
it makes me happy to "treat" myself.
It totally stinks to have this disease and
to have to take this drug, but it's worth
it. Recently, I had my first relapse
since my diagnosis. I was in the hospital
for 5 days while I received IV steroid
treatment. That was way worse than a
once-a-week injection.
At the end of the day, I am happy that
there is something that we can use to
treat this disease. Let's hope for a
cure.
