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Medical Forum / Diseases and Disorders / Lupus / September 2006

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Re: waiting

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Zinn - 15 Sep 2006 06:36 GMT
Google would not let me add to this thread, said it was closed. But I
wanted to say <WOW> on the subject.  Guess I will have to read the
posts to see how things are going concerning poster. My memory for
names is the pits, it starts with a Z.

Makes me very concerned as I started the Plaquinel today.....

The responders to the main post was informative also.

Wish you well.
Zinn
Zuska - 16 Sep 2006 07:28 GMT
> Google would not let me add to this thread, said it was closed. But I
> wanted to say <WOW> on the subject.  Guess I will have to read the
> posts to see how things are going concerning poster. My memory for
> names is the pits, it starts with a Z.
>
> Makes me very concerned as I started the Plaquinel today.....

Hi Zinn ~

Yes, it does start with a Z ... Zuska is Slovak for Susan!

I did at one time believe that the Plaquenil was the culprit regarding
the muscle weakness, but everything I have read indicates that if this
was the case, it would clear my system within two months. It will be
two months in about a week, and the weakness continues to get worse.

Even if it was a result of the Plaquenil and was not going to get
better, I don't think it would continue to get worse, having stopped
the Plaquenil. Also, the muscle biopsy did not show any indication that
the Plaquenil was the culprit.

Testing for Myasthenia Gravis is going to be started, but they were
unable to schedule the third EMG until October 2. After that, there are
two medications that are considered 'diagnostic.' In other words, if
they think you have MG, they give you this medicine, and if you get
better, then they know that MG is what you have. One medication is
given by IV, the other is in pill form. I don't know which the doctor
will order, but I am ready to do just about anything to get to the
bottom of this!

What I can tell you about Plaquenil is that before I was taking it, I
had a lot of joint pain and a great deal of fatigue. As soon as I
started the Plaquenil, I was virtually pain free, and the fatigue was
greatly improved. Unfortunately, at about the same time this whatever
it is started, so I don't think I recieved all the benefit possible
from the Plaquenil. If I had my choice, now that we know it was not the
Plaquenil, I would start taking it again, but my Rheumatologist does
not want to do that until they have a diagnosis for the muscle weakness
thing ~ and I know that she is correct to wait, since whatever
treatment I end up with for the muscle condition might react with the
Plaquenil.

Zinn, I hope this puts your mind at ease. I was told that only about
one percent of people who take Plaquenil long term have a bad reaction
~ and that is long term. So, I would recommend that you get a copy of
the Patient Information that comes with the medication and read it
carefully. That way, you will know what to look out for in the way of
side effects. I will never start any medication again without doing
that!

Take care ~

Susan aka Zuska (Snowey95@aol.com)
Zinn - 16 Sep 2006 16:41 GMT
I love the Zuska, certainly sets you apart from anyone else I have ever
met :)

Thank you for taking the time to condense all you have said into a easy
post for me to read. I have a cousin with MG but we hardly ever talk,
one of those cousins down on the 3rd level removed 2 times by parents
divorce, etc, plus many miles away.

I have the patient sheet for the plaquinel, and doc is starting me out
very slow as I am chemically sensitive and even cutting that dose in
half to build up slow rather than shock my system.

I've only taken one dose so far. I am very fatigued and muscles so very
tired and sore it hurts to even have a shower spray onto me.

I wish you well Zuska, I have much empathy for all you and everyone is
going through.

hugs,
Zinn

> > Google would not let me add to this thread, said it was closed. But I
> > wanted to say <WOW> on the subject.  Guess I will have to read the
[quoted text clipped - 49 lines]
>
> Susan aka Zuska (Snowey95@aol.com)
 
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