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Medical Forum / Diseases and Disorders / Lupus / March 2005

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Plaquenil?

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arcr17@cox.net - 12 Mar 2005 00:48 GMT
Hi All,

    My Rheumy recently started me on Plaquenil. The list of side
effects make me think my lupus symptoms (mild, but the fatigue is
kicking my b---) aren't so bad...should I be concerned? what experiences
have you had? Is it worth it in the long run? Especially since it can
take 3-6 months to tell if its helping?

              Any input you can give would be appreciated...

                            Frankie
KCat - 12 Mar 2005 02:28 GMT
> Hi All,
>
[quoted text clipped - 7 lines]
>
>                              Frankie

Plaquenil is a very mild drug overall.  I think it's very much worth trying
and the risks really are quite low.  I've been on it for err..I think 4
years now.  Something like that.  I actually noticed an improvement within
the first 3 weeks. I'd been having daily headaches/fever for years and they
just stopped.  I still go my monthly migraine but the daily stuff just flat
went away.  After a few months one day I was sitting there and realized I
hadn't noticed my hip pain in a while... and then i realized my hands
weren't constantly aching.  It was a subtle thing at first but now when I
look back on how bad I felt before the Plaquenil, I wonder how the h*** I
got through the day.  I have also run out on a couple of occasions and
within a few days began to get back all those symptoms.  They will tell you
that it stays in your system for several weeks after you stop taking it.
What they don't tell you is that it doesn't stay in there at the level to be
beneficial!  So for me it's a must and in the past year still more symptoms
have dropped off.  I still have bad days - but they are much fewer and
further between.

Of course - that's my experience and with all meds, everyone is different.
The most common complaint i've heard is headache.  You do need to take it
with food or milk.  The risks from serious side effects are low and can be
caught early enough to minimize damage as long as you follow the rules.  Get
a liver function test every six months, get a baseline of your eye health
now (if you haven't already - some docs make you do so before prescribing)
and make sure to follow that up every 6 months as well.

The only problem I've had is when I forget to take it with food - the nausea
is pretty bad then.  But short-lived.

IMO - it's a very worthwhile drug to try.  Dr. Wallace ("The Lupus Book")
feels strongly that this drug keeps mild lupus mild or even contributes to
long-term remission of mild lupus where otherwise a patient might progress
to more severe disease.

HTH,
KCat

For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet

For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
arcr17@cox.net - 12 Mar 2005 03:14 GMT
Thanks KCat...

          As I said my symptoms are mild, but I never have any energy
and I can manage work but my house is a disaster...hoping this will help
with the body aches and fatigue etc.

                           Thanks again

                                 Frankie

>  
>
[quoted text clipped - 54 lines]
>
>  
pellmellwillynilly@hotmail.com - 12 Mar 2005 05:51 GMT
I had been so tired for a few years that I'd have to stop my car on the
way places and take a nap. (It happened frequently between stores
during an morning of errands.) Around 10:15 one Friday night I wasn't
going to make it the last 15 minutes home from a party, where I hadn't
drunk much alcohol if any. I pulled under a bright lamp in a mall
parking lot. At 4 a.m. I was awakened by a security guy pounding a "Do
not park" sign onto my windshield.

You get the idea -- the sleepiness was bad. Unable to find any physical
cause, doctors had me on antidepressants, assuming that was the cause
of the somnolence. After a month on Plaquenil, I didn't even need so
much sleep at night, and in the 4 1/2 years I've been on it, I can
count on a single hand the car naps I've had to take. It's also helped
substantially with the joint aches.

But now my liver enzymes are creeping up. As of two days ago, the
rheumy has taken me off the anti-inflammatory and booze. (Rats! I just
love my vanilla swiss almond ice cream topped with Kahlua!) Hope
Plaquenil isn't next on the hit list.

> Thanks KCat...
>
[quoted text clipped - 61 lines]
> >
> >  
arcr17@cox.net - 12 Mar 2005 08:03 GMT
Thanks Pellmell,

     Your story sounds familiar some nights I'm so tired around bed
time I take a little nap then get up and get ready for bed LOL...my
liver enzymes are already elevated...but they ruled out autoimmune as
the cause so I'll just keep monitoring them.

                    Thanks

                                 Frankie

>I had been so tired for a few years that I'd have to stop my car on the
>way places and take a nap. (It happened frequently between stores
[quoted text clipped - 242 lines]
>
>  
Deb - 12 Mar 2005 09:27 GMT
I've been on Plaquenil for about 18 months now, I take 200mg twice a day, my joint pain decreased after about a month of taking but has got much worse again recently, but I've had alot of other stuff going on as well; the major benefit I have found is in controlling my rashes. My Dermatologist has tried to reduce the dose down to once a day but every time we've tried my rash is as bad as ever after a few weeks.
I do have increasing problems with my vision, mainly peripheral, but specialists can't find anything wrong with the physical make up of my eyes- now waiting to see an optical neurologist- 99% sure that it isn't the plaquenil, but don't know whats causing it either.
I would be lost if they ever took Plaqueniloff the market, lets face it, if you read about every side-effect for every drug we take we wouldn't take anything, personally I would be in a very sorry state,
give it a go,
DEB (UK).
 Thanks Pellmell,

       Your story sounds familiar some nights I'm so tired around bed time I take a little nap then get up and get ready for bed LOL...my liver enzymes are already elevated...but they ruled out autoimmune as the cause so I'll just keep monitoring them.  

                      Thanks

                                   Frankie

 pellmellwillynilly@hotmail.com wrote:
I had been so tired for a few years that I'd have to stop my car on the
way places and take a nap. (It happened frequently between stores
during an morning of errands.) Around 10:15 one Friday night I wasn't
going to make it the last 15 minutes home from a party, where I hadn't
drunk much alcohol if any. I pulled under a bright lamp in a mall
parking lot. At 4 a.m. I was awakened by a security guy pounding a "Do
not park" sign onto my windshield.

You get the idea -- the sleepiness was bad. Unable to find any physical
cause, doctors had me on antidepressants, assuming that was the cause
of the somnolence. After a month on Plaquenil, I didn't even need so
much sleep at night, and in the 4 1/2 years I've been on it, I can
count on a single hand the car naps I've had to take. It's also helped
substantially with the joint aches.

But now my liver enzymes are creeping up. As of two days ago, the
rheumy has taken me off the anti-inflammatory and booze. (Rats! I just
love my vanilla swiss almond ice cream topped with Kahlua!) Hope
Plaquenil isn't next on the hit list.

 Thanks KCat...

          As I said my symptoms are mild, but I never have any
   energy
 and I can manage work but my house is a disaster...hoping this will
   help
 with the body aches and fatigue etc.

                           Thanks again

                                 Frankie

KCat wrote:

   <arcr17@cox.net> wrote in message
     news:1%qYd.4142$uk7.2803@fed1read01...
       Hi All,

   My Rheumy recently started me on Plaquenil. The list of side
effects make me think my lupus symptoms (mild, but the fatigue is
kicking my b---) aren't so bad...should I be concerned? what
       experiences
 have you had? Is it worth it in the long run? Especially since it
       can
 take 3-6 months to tell if its helping?

             Any input you can give would be appreciated...

                           Frankie

       Plaquenil is a very mild drug overall.  I think it's very much worth
     trying
 and the risks really are quite low.  I've been on it for err..I
     think 4
 years now.  Something like that.  I actually noticed an improvement
     within
 the first 3 weeks. I'd been having daily headaches/fever for years
     and they
 just stopped.  I still go my monthly migraine but the daily stuff
     just flat
 went away.  After a few months one day I was sitting there and
     realized I
 hadn't noticed my hip pain in a while... and then i realized my
     hands
 weren't constantly aching.  It was a subtle thing at first but now
     when I
 look back on how bad I felt before the Plaquenil, I wonder how the
     h*** I
 got through the day.  I have also run out on a couple of occasions
     and
 within a few days began to get back all those symptoms.  They will
     tell you
 that it stays in your system for several weeks after you stop taking
     it.
 What they don't tell you is that it doesn't stay in there at the
     level to be
 beneficial!  So for me it's a must and in the past year still more
     symptoms
 have dropped off.  I still have bad days - but they are much fewer
     and
 further between.

Of course - that's my experience and with all meds, everyone is
     different.
 The most common complaint i've heard is headache.  You do need to
     take it
 with food or milk.  The risks from serious side effects are low and
     can be
 caught early enough to minimize damage as long as you follow the
     rules.  Get
 a liver function test every six months, get a baseline of your eye
     health
 now (if you haven't already - some docs make you do so before
     prescribing)
 and make sure to follow that up every 6 months as well.

The only problem I've had is when I forget to take it with food -
     the nausea
 is pretty bad then.  But short-lived.

IMO - it's a very worthwhile drug to try.  Dr. Wallace ("The Lupus
     Book")
 feels strongly that this drug keeps mild lupus mild or even
     contributes to
 long-term remission of mild lupus where otherwise a patient might
     progress
 to more severe disease.

HTH,
KCat

For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet

For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/



     
 
arcr17@cox.net - 12 Mar 2005 15:16 GMT
thanks Deb,

 I agree the list of side effects is a mile long on most drugs out
there. I've only been on it for a couple days.  Certainly think its
worth it if it gives me more energy and less body aches !!! I'll make
sure to get my eyes checked periodically.

                  Thanks

                             Frankie
                           

> I've been on Plaquenil for about 18 months now, I take 200mg twice a
> day, my joint pain decreased after about a month of taking but has got
[quoted text clipped - 274 lines]
>>
>>  
Andy - 12 Mar 2005 19:23 GMT
[]
> You do need to take it
>with food or milk.

Does it matter what type of milk it is? (I mean cow vs goat vs buffalo
vs soya; full vs half vs no cream)
Signature

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

KCat - 12 Mar 2005 23:05 GMT
> []
> > You do need to take it
> >with food or milk.
>
> Does it matter what type of milk it is? (I mean cow vs goat vs buffalo
> vs soya; full vs half vs no cream)
only if you're on a diet, smartalek!
:P
 
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