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Home > Archive > Lupus Support > March 2005 > Plaquenil?
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| arcr17@cox.net 2005-03-19, 6:20 pm |
| 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
| |
|
| <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 2005-03-19, 6:20 pm |
| 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...
>
>
>
>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/
>
>
>
>
| |
| pellmellwillynilly@hotmail.com 2005-03-19, 6:20 pm |
| 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.
arcr17@cox.net wrote:
> 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[vbcol=seagreen]
> with the body aches and fatigue etc.
>
> Thanks again
>
> Frankie
>
> KCat wrote:
>
news:1%qYd.4142$uk7.2803@fed1read01...[vbcol=seagreen]
experiences[vbcol=seagreen]
can[vbcol=seagreen]
trying[vbcol=seagreen]
think 4[vbcol=seagreen]
within[vbcol=seagreen]
and they[vbcol=seagreen]
just flat[vbcol=seagreen]
realized I[vbcol=seagreen]
hands[vbcol=seagreen]
when I[vbcol=seagreen]
h*** I[vbcol=seagreen]
and[vbcol=seagreen]
tell you[vbcol=seagreen]
it.[vbcol=seagreen]
level to be[vbcol=seagreen]
symptoms[vbcol=seagreen]
and[vbcol=seagreen]
different.[vbcol=seagreen]
take it[vbcol=seagreen]
can be[vbcol=seagreen]
rules. Get[vbcol=seagreen]
health[vbcol=seagreen]
prescribing)[vbcol=seagreen]
the nausea[vbcol=seagreen]
Book")[vbcol=seagreen]
contributes to[vbcol=seagreen]
progress[vbcol=seagreen]
| |
| arcr17@cox.net 2005-03-19, 6:21 pm |
| 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.
>
>
>arcr17@cox.net wrote:
>
>
>energy
>
>
>help
>
>
>news:1%qYd.4142$uk7.2803@fed1read01...
>
>
>experiences
>
>
>can
>
>
>trying
>
>
>think 4
>
>
>within
>
>
>and they
>
>
>just flat
>
>
>realized I
>
>
>hands
>
>
>when I
>
>
>h*** I
>
>
>and
>
>
>tell you
>
>
>it.
>
>
>level to be
>
>
>symptoms
>
>
>and
>
>
>different.
>
>
>take it
>
>
>can be
>
>
>rules. Get
>
>
>health
>
>
>prescribing)
>
>
>the nausea
>
>
>Book")
>
>
>contributes to
>
>
>progress
>
>
>
>
>
| |
|
| 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).
<arcr17@cox.net> wrote in message news:ZmxYd.4198$uk7.3810@fed1read01...
Thanks Pellmell,
Your story sounds familiar some nights I'm so tired around bed time I take a little nap then get up and get ready for bed LOL...my liver enzymes are already elevated...but they ruled out autoimmune as the cause so I'll just keep monitoring them.
Thanks
Frankie
pellmellwillynilly@hotmail.com wrote:
I had been so tired for a few years that I'd have to stop my car on the
way places and take a nap. (It happened frequently between stores
during an morning of errands.) Around 10:15 one Friday night I wasn't
going to make it the last 15 minutes home from a party, where I hadn't
drunk much alcohol if any. I pulled under a bright lamp in a mall
parking lot. At 4 a.m. I was awakened by a security guy pounding a "Do
not park" sign onto my windshield.
You get the idea -- the sleepiness was bad. Unable to find any physical
cause, doctors had me on antidepressants, assuming that was the cause
of the somnolence. After a month on Plaquenil, I didn't even need so
much sleep at night, and in the 4 1/2 years I've been on it, I can
count on a single hand the car naps I've had to take. It's also helped
substantially with the joint aches.
But now my liver enzymes are creeping up. As of two days ago, the
rheumy has taken me off the anti-inflammatory and booze. (Rats! I just
love my vanilla swiss almond ice cream topped with Kahlua!) Hope
Plaquenil isn't next on the hit list.
arcr17@cox.net wrote:
Thanks KCat...
As I said my symptoms are mild, but I never have any
energy
and I can manage work but my house is a disaster...hoping this will
help
with the body aches and fatigue etc.
Thanks again
Frankie
KCat wrote:
<arcr17@cox.net> wrote in message
news:1%qYd.4142$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 2005-03-19, 6:21 pm |
| 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
Deb wrote:
[vbcol=seagreen]
> 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).
>
> <arcr17@cox.net <mailto:arcr17@cox.net>> wrote in message
> news:ZmxYd.4198$uk7.3810@fed1read01...
> Thanks Pellmell,
>
> Your story sounds familiar some nights I'm so tired around
> bed time I take a little nap then get up and get ready for bed
> LOL...my liver enzymes are already elevated...but they ruled out
> autoimmune as the cause so I'll just keep monitoring them.
>
> Thanks
>
> Frankie
>
> pellmellwillynilly@hotmail.com wrote:
>
| |
|
| In article <gtsYd.9455$YD4.8285@newssvr12.news.prodigy.com>, KCat
<kcattx@sbcglobal.net> wrote
[]
> 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)
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
|
"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:tCWRX8EGH0MCFw3Z@kitzbuhel.demon.co.uk...
> In article <gtsYd.9455$YD4.8285@newssvr12.news.prodigy.com>, KCat
> <kcattx@sbcglobal.net> wrote
> []
>
> 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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