Lupus Support - Questions I should ask

Author

Questions I should ask

Zuska

2006-07-31, 2:24 am

I will be seeing my Rheumatologist on Tuesday ~ the one that did not
pay attention to my constant requests for assistance back in April when
I believed that something was up about not being able to walk. I was
wondering what I should say to her when I see her.

Having talked with several people, I am more and more convinced that
she mishandled the situation. I have check several on line sites as
well as demanded and read the insert that comes with Plaquenil (but
only if you ask for it!) and all information clearly says that if there
is muscle weakness and a lack of reflexes that the Plaquenil should be
discontinued.

When I saw her in the middle of May, this was the case, and her
response was to tell me to keep taking the Plaquenil, I had an MRI, and
was referred to a Neurologist.

After more tests by the Neurologist, CIDP and Multifocal Motor
Neuropathy have been ruled out, and I am being referred to a third
Neurologist ~ one who specializes in muscle wasting diseases. The
second Neurologist listened when I asked if the Plaquenil could have
anything to do with this, and then he called the Rheumatologist, who in
turn called me to tell me to stop taking the Plaquenil. The last dose I
took was on Wednesday morning, and thus far, I do not see much
improvement.

So ~ here are my questions: Does anyone have any experience with this?
If this is indeed a reaction to the Plaquenil, how long until I see
some improvement ... if there will be any? Could this be permanent?
Does anyone know of any websites that I could check about this, since I
have come up empty. And, the big one ~ other than telling her that I do
not trust her anymore, what else should I say on Tuesday? I have no
idea how to find another Rheumatologist, but I know that I will have
to. It does no good to have one that you do not trust.

I hope that someone out there will have some ideas for me ~ thanks in
advance!

Susan aka Zuska

William R Thompson

2006-07-31, 8:28 am

"Zuska" wrote:

> And, the big one ~ other than telling her that I do
> not trust her anymore, what else should I say on Tuesday?

How about "Go find a cliff and play 'Lemmings!'"?

> I have no idea how to find another Rheumatologist,

Go to

http://www.lupus.org/chapters/locator.asp

and click on the site for your state. The local chapter of the
Lupus Foundation of America will give you a list of doctors
with lupus experience. You'll probably need a recommendation
from another doctor to see one.

--Bill Thompson

Shelagh

2006-07-31, 4:29 pm

Plaquenil builds up in and stays in your plasma for a long period of =
time;=20
that is why it takes up to 6 or 8 weeks to work in fact;=20
it needs to build up to a certain level in your plasma for effect and =
once it does it does the job;=20
however, it also needs to wash out of that plasma once you discontinue =
it too; so be patient, it will... it has taken over a year for it to =
leave my system, and I am feeling badly due to being off of it; I never =
realized just how much good it was doing me !!! lol;=20
I was on chloroquin, not plaquenil, a different antimalarial with the =
same base of hydroxchloroquine and a different mix with phosphate =
instead of sulphate..... and because it gave me central vision loss, =
damaging irreversibly my retinas in both eyes, I can no longer take =
either form of the drug again, I was just informed of that by my =
specialist and am a very unhappy camper! <sigh>........=20
anyhow the plaquenil will wash out in time... I would imagine we are =
all different as we are with our illnesses, but I was on it over 6 years =
and it has taken over a year to get it out of my system.... good luck to =
you and your patience!
hugs,
Shelagh
http://clik.to/lupus

"Zuska" <Snowey95@aol.com> wrote in message =
news:1154330462.532276.37150@h48g2000cwc.googlegroups.com...
>I will be seeing my Rheumatologist on Tuesday ~ the one that did not
> pay attention to my constant requests for assistance back in April =
when
> I believed that something was up about not being able to walk. I was
> wondering what I should say to her when I see her.
>=20
> Having talked with several people, I am more and more convinced that
> she mishandled the situation. I have check several on line sites as
> well as demanded and read the insert that comes with Plaquenil (but
> only if you ask for it!) and all information clearly says that if =
there
> is muscle weakness and a lack of reflexes that the Plaquenil should be
> discontinued.
>=20
> When I saw her in the middle of May, this was the case, and her
> response was to tell me to keep taking the Plaquenil, I had an MRI, =
and
> was referred to a Neurologist.
>=20
> After more tests by the Neurologist, CIDP and Multifocal Motor
> Neuropathy have been ruled out, and I am being referred to a third
> Neurologist ~ one who specializes in muscle wasting diseases. The
> second Neurologist listened when I asked if the Plaquenil could have
> anything to do with this, and then he called the Rheumatologist, who =
in
> turn called me to tell me to stop taking the Plaquenil. The last dose =
I
> took was on Wednesday morning, and thus far, I do not see much
> improvement.
>=20
> So ~ here are my questions: Does anyone have any experience with this?
> If this is indeed a reaction to the Plaquenil, how long until I see
> some improvement ... if there will be any? Could this be permanent?
> Does anyone know of any websites that I could check about this, since =
I
> have come up empty. And, the big one ~ other than telling her that I =
do
> not trust her anymore, what else should I say on Tuesday? I have no
> idea how to find another Rheumatologist, but I know that I will have
> to. It does no good to have one that you do not trust.
>=20
> I hope that someone out there will have some ideas for me ~ thanks in
> advance!
>=20
> Susan aka Zuska
>

Zuska

2006-08-01, 2:28 am

Shelagh wrote:
> Plaquenil builds up in and stays in your plasma for a long period of time;
> that is why it takes up to 6 or 8 weeks to work in fact;

Thanks to both of you that wrote.

In some ways, I do want to invite her to go play in traffic. On the
other hand, it could be that what has happened to me was going to
happen anyway. At this point, I don't know ~ and although I might never
know, for me the fact is that I started taking this medication the
first week in April, and by the third week in April I was calling every
day to ask what the heck was going on with me. And, then when I got in
to see her ~ both May 15 and June 1 ~ although she found that I had no
reflexes, it never came to her mind that this could be related to
Plaquenil ... even though in the Patient Information it clearly states
that if there are no reflexes that the medication is to be
discontinued. It also recommends treatment with something to help clear
the Plaquenil out of the system. So, even last week when she called and
said, "Stop taking the Plaquenil and let's see what happens," there was
no mention of anything to do other than sit and wait.

I know that my frustration is that in five weeks I will officially be
unemployed ~ and if it turns out that the Plaquenil is the culprit,
(and if this is irreversable) I may potentially lose 10 years of
employment due to a medication that was mismanaged.

I am willing to take the time to find out if it is the Plaquenil or
something else, but if it turns out to be the Plaquenil, I fear that in
addition to seeking a new Rheumatologist, I will also be looking for a
lawyer ... which is the last thing I want to do.

Thanks again for responding ~ and thanks for all the support here. I
hope that I am at some point able to return the favor ~

Susan aka Zuska