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Medical Forum / Diseases and Disorders / Arthritis / September 2005

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help please.. humira and "jittery"

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Alison DeLorme - 25 Sep 2005 02:09 GMT
Hi all... I just took my third dose of humira and I'm beginning to make a
connection of a new symptom with taking of the shot. Within an hour of
taking the injection I get what I can only describe as "jittery" It lasts
for a few days and then it's gone. - until the next shot. Basically what is
happening is that I feel like I want to tense every muscle in my body. I
don't have to - and it's not an involutary type of contraction, like a tic
or restless leg. But the feeling to do so is overwhelming. It's much worse
at night, just before bed. and it prevents me from sleeping - at least until
the point when I'm just so exhausted I pass out... I get this way when I day
certain antihistimines and decongestants too. IT's so hard to explain.
Hmm... maybe this might help - it's like when you are really nervous and
your body is trembling - all your muscles are tightened. I'm getting the
physical feeling of that without the mental nervousness. make any sense???

I've been trying to find references on the internet but since I don't know
how to explain it, I don't know what to search for... I have a dr appt on
monday. Hopefully she can shed light on this. The humira seems to be working
ok. But I think she is going to want to increase the dose to weekly - at
which point, I don't think I can deal with this sie effect...

any input from others - whether experiences or possible clues where I could
look - would be helpful... thanks!!

alison
CQBHurts - 25 Sep 2005 07:58 GMT
Google restless leg syndrome.

http://www.cnn.com/HEALTH/library/DS/00191.html
Smokie Darling (Annie) - 25 Sep 2005 12:46 GMT
> Hi all... I just took my third dose of humira and I'm beginning to make a
> connection of a new symptom with taking of the shot. Within an hour of
[quoted text clipped - 9 lines]
> your body is trembling - all your muscles are tightened. I'm getting the
> physical feeling of that without the mental nervousness. make any sense???

Edgy?  Jumpy?  Feel like you are coming out of your skin or that you
need to?  I had that (among a litany of other problems).  Here's hoping
your RD has an answer for you.  You did tell him/her about it, right?
I know that I had serious reactions, so I was taken off it.  I hope
they can fix this for you quickly with no difficulties.

> I've been trying to find references on the internet but since I don't know
> how to explain it, I don't know what to search for... I have a dr appt on
[quoted text clipped - 6 lines]
>
> alison

Be well, Alison, I'm off for a few days of fun and relaxation (well, I
can hope for the relaxation part).

Smokie Darling (Annie)
Duckie - 25 Sep 2005 23:51 GMT
That doesn't sound good. Hope you told your doctor.
I just went to the Humira site and under physician
stuff there is a PDF of info. It wouldn't let me do a
copy and paste but here is the link.
http://tinyurl.com/7gbvl
Go to page 5 and read the hypersensitive section. I
think I would definitely call the doctor.
Duckie

> Hi all... I just took my third dose of humira and I'm beginning to make a
> connection of a new symptom with taking of the shot. Within an hour of
[quoted text clipped - 20 lines]
>
> alison

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d'huit - 26 Sep 2005 02:07 GMT
> That doesn't sound good. Hope you told your doctor.
> I just went to the Humira site and under physician stuff there is a PDF of
[quoted text clipped - 3 lines]
> definitely call the doctor.
> Duckie

glad you found that, duckie.  i was thinking there was a hypersensitive
reaction going on, too.  do let your doctor know about it, asap, alison.

kate

>> Hi all... I just took my third dose of humira and I'm beginning to make a
>> connection of a new symptom with taking of the shot. Within an hour of
[quoted text clipped - 21 lines]
>>
>> alison
Alison DeLorme - 26 Sep 2005 02:26 GMT
Thanks everyone. Upon searching "restless leg syndrome" more, it fits the
bill well but it only happens for a few days after the humira injection, so
I'm thinking it's a reaction... I hae the RD appt tomorrow and will discuss
this. I'll update in a day or two - busy day tomorrow...

alison
Alison DeLorme - 27 Sep 2005 02:34 GMT
well, the RD didn't have any answers as it's not a listed side effect of
humira and she hasn't come across it before. But that anyone can react in
their own ways. She didn't think it was harmful, though. She wants me to go
up to 1 time /wkly if I can handle it. I said I would try it, and take it
with the mtx, which basically comatoses me for the first 12 hours after
injection. So maybe they will play off each other and I'll be ok. I'll try
it for two injections and if it's not working, I'll call back for other
options. Maybe a sleeping aid. Or maybe switching to Remicade. I so hate the
thought of the time needed for the infusions. I am working and have three
young children as well. DH and I split child care time, so we are strapped
for time as it is... From the sound of it, I would probably end up on every
4wks, instead of every 8. One advantage is that it is 100% covered, no
copays or drug costs. I pay $40/month for the humira/enbrel. --- I will have
to think about it...

alison
Diane - 27 Sep 2005 03:57 GMT
i can see how switching to remicade would be really hard for you,
alison. you have a lot on your plate. but just think. . . if you DID
switch, maybe we'd get our remi at the same time in dr z's office!

mine is costing me $400 every six weeks. ouch. the insurance i had in
VA covered all but $20.

quite honestly, i can't imagine how you work, have RA, and take care of
three kids. my hat's off to you.

diane
Duckie - 27 Sep 2005 05:25 GMT
I don't know anyone doing 4 wks on Remicade. 6-8 is the
norm with 8 being the real norm. They move it closer
when the drug is not working as well anymore.
My Remicade is 100% covered as well as was the dosage
of Rituxan. Personally, I love the three hours of time
in the Infusion clinic. I read, knit sometimes, sleep
often, chat other times,....
Duckie

.... Or maybe switching to Remicade. I so hate the
> thought of the time needed for the infusions. I am working and have three
> young children as well. DH and I split child care time, so we are strapped
[quoted text clipped - 4 lines]
>
> alison

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