myositis

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Erina Herrick - 20 Apr 2006 10:13 GMT

Hello I am a returning member with Np Lupus ( Neuro psychiatric) Can any one
tell me what treatment is available for myositis? and what can be seen on
MRI of the thigh Muscles?
Best wishes
Erina

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candi bowen - 21 Apr 2006 20:11 GMT

Hi Erina,

I've had it too. Animals get it also; in horses it's called 'tying up'
because of the muscle enzyme CPK. Anyway, we'll ignore the horse issue right
now. According to Dr. Daniel Wallace, a blood test for creatine
phosphokinase is the dx of choice, although sometimes an EMG is needed.
Medication of choice is, of course, steroid therapy. What happens with
horses is (& the same applies to people) if they're inactive, say for a
weekend, & are suddenly put back to work, the CPK enzyme is produced,
causing extreme muscle pain. So if you have a connective tissue disease &
are active, then suddenly inactive for a period of time, when you become
active again, you're more prone to produce CPK because of the connective
tissue problem; ie intense pain. Clear as mud?

Candi

> From: "Erina Herrick" <erina@btinternet.com>
> Newsgroups: alt.support.lupus
[quoted text clipped - 6 lines]
> Best wishes
> Erina

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Gretchen - 21 Apr 2006 22:50 GMT

Hi Erina and Candi,
I have had elevated CPKs and aldolase levels for about 6 months with my
SLE. Your information about inactivity is interesting. I've noticed
even in the morning, after being in bed all night, that the muscle pain
is worse. Myositis can also affect smooth muscle and cause more
serious problems.

Erina, can you tell me more about your NP lupus? My 14 year old
daughter is having migraines that look like strokes and last for weeks,
unless she gets high doses of steroids - then the speech problems and
partial paralysis clears up within hours of the first dose. This time
she had some definate personality changes about a week before the
migraine. She has tested positive for lupus autoantibodies related to
clotting, but has not been diagnosed with lupus.

Thanks in advance for the info.

Gretchen

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Erina Herrick - 23 Jul 2006 14:55 GMT

Gretchen My disease has lasted 47 years it has affected almost everything in
that time. I had a stroke in '81 and severe vasculitis in hands and feet as
well as probably in my brain. Strokes can be a part of lupus Ask for your
daughter to be tested for lupus
Kind Regards
Erina

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> Hi Erina and Candi,
> I have had elevated CPKs and aldolase levels for about 6 months with my
[quoted text clipped - 14 lines]
>
> Gretchen

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Andy - 23 Jul 2006 16:17 GMT

[Disentangled and rearranged]

>> Hi Erina and Candi,
>> I have had elevated CPKs and aldolase levels for about 6 months with my
[quoted text clipped - 10 lines]
>> migraine. She has tested positive for lupus autoantibodies related to
>> clotting, but has not been diagnosed with lupus.

>Gretchen My disease has lasted 47 years it has affected almost everything in
>that time. I had a stroke in '81 and severe vasculitis in hands and feet as
>well as probably in my brain. Strokes can be a part of lupus Ask for your
>daughter to be tested for lupus
>Kind Regards
>Erina

You say "She has tested positive for lupus autoantibodies related to
clotting" - that sounds very much like Hughes (antiphospholipid)
syndrome, a disease in its own right which also happens as a
complication of Lupus. It is treatable.

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Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

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