Plaquenil

[Guest guest]

i have been taking plaquenil for a year now and unfortunatlly my eye sight is

not what it use to be my docs all say i need to go to the eye doc and after

this year the plaquenil just is not doing the job it did in the beggining,

but i do not want to discurage you it did take about 3 months to kick in and

until the last two months it was working great.

take care

holly

[Guest guest]

,

Hi, my name is Jul (pronounced " Jool " ). I was put on Plaquenil about six months

ago. Haven't noticed a darn thing about being on it. It does, however, have a

very " low-keyed " response anyway. I also can't take the MTX (which was the only

drug other than steroids that helped me) due to my liver problems. I asked my

physician if I could stop the Plaquenil, and was told to go ahead. They're

still searching for the reason why my liver function enzymes keep going up, but

no answers yet.

I feel like a worn out dishcloth just hanging there until somebody pays

attention! That the dear lord God and all of you for making each and every day

a little more easy to get through.

Feel free to email me off the group.

Jul

(lilac_rose@... )

Plaquenil

Anyone out there on Plaquenil or have taken it before? I'm into my third

month. My rheumy says it takes 3 months to become effective so I've been

patiently waiting and figure I have more time to go. I'm on Prednisone in

the meantime. Just wondered what other people's experiences were with it. I

can't take Methotrexate right now so they started the Plaquenil instead.

thanks,

[Guest guest]

I took plaquenil for quite some time, but was pulled off of it because it

eventually didn't help me any longer. One very important thing to remember is

that plaquenil can cause serious (and sometimes irreversible) eye damage. If

you are taking it, you should have a very thorough eye exam every 6 months.

Chris

greywolf70@...

Re: Plaquenil

i have been taking plaquenil for a year now and unfortunatlly my eye sight is

not what it use to be my docs all say i need to go to the eye doc and after

this year the plaquenil just is not doing the job it did in the beggining,

but i do not want to discurage you it did take about 3 months to kick in and

until the last two months it was working great.

take care

holly

[Guest guest]

I took plaquenil in the beginning for 6 months it didnt help at all with me,

but I also had alot of joint involvement. My rheumy wishes he had put me

straight on methotrexate instead of wasting a year with plaquenil and gold.

Maybe we could have prevented my hip replacement if I had been on aggressive

therapy. If you cant take mtx, there are other options, enbrel, kineret,

remicade. I know they are new drugs and people worry about possible

effects, but the stills and the joint damage can be a hundered times more

worse than the possible side effects from the meds.

My big thing is early aggressive treatment with at least one of the new

biologic agents, possibly also mtx to get into remission then slowly remove

the prednisone, and mtx and the hopefully the biologic agent.

[Guest guest]

,

Yes, Vivian is on plaq. Folks at Bethesda Medical told her from the outset,

that because of the effects this drug has on her retina over time, she is

required to visit the eye doctor a minimum of once per year. They said that

over time the plaq causes the retina to become detached, but is correctable.

They just need to be kept aware of it. So I immediately took to the eye

specialist to document what her eyes look like right now, so a year from

when they look again, they can immediately spot any abnormalities. As far

as if the plaq is helping her or not, I havn't noticed anything to write

home about.

Thanks,

Bob & Vivian Mirabal

Plaquenil

Anyone out there on Plaquenil or have taken it before? I'm into my third

month. My rheumy says it takes 3 months to become effective so I've been

patiently waiting and figure I have more time to go. I'm on Prednisone in

the meantime. Just wondered what other people's experiences were with it.

I

can't take Methotrexate right now so they started the Plaquenil instead.

thanks,

[Guest guest]

Same here, my doc said an eye exam every six months while I was on plaq.

the drug did not help me either.

Those dreams on prednisone are something else, I tend to call out to

people in those dreams and it wakes my husband. Course in the daytime I

am always hollering to someone about something anyway, I guess I figure

no one else can hear either, lol.

C J wrote: Then both my Opthamologist and my Rheumatologist

required visits every 4-6 months to be sure the Plaquenil was not doing

damage. I think on this drug, on year may not be often enough to catch

damage...

[Guest guest]

Hi, everyone! Thank you for your input on the Plaquenil. FIrst of all, i

must concur that my doctor said the eye exams had to be every 6 months (also

that you need to get tested before you start the med so they can tell if

there has been any change). However, I have read that some doctors do feel

it is safe to wait a year to be checked.

Next, you guys didn't give me too much positive info. on Plaquenil! One or

two of you said it helped for a while. I really hope that once it kicks in

it will do something. Otherwise, I'll feel like I wasted time. I've been on

10 mg. on Prednisone while I'm waiting which is helping a lot. But I'd

really like to see a long-term effect.

I was nursing my youngest and couldn't take Methotrexate. I had to get LOTS

of info. before I could even get permission to take the Plaquenil. however,

I am finally weaning her and figure if the Plaquenil doesn't do anything in

the next 2 months, I'll ask my doctor to reconsider.

Well, just wanted to let you know I appreciated all the input. I am too

tired to read anymore e-mails tonight, so I think I'll go veg on the couch!

have a good night and a good chat if you're going!

[Guest guest]

I agree 100% with ( below)

Re: Plaquenil

I took plaquenil in the beginning for 6 months it didnt help at all with me,

but I also had alot of joint involvement. My rheumy wishes he had put me

straight on methotrexate instead of wasting a year with plaquenil and gold.

Maybe we could have prevented my hip replacement if I had been on aggressive

therapy. If you cant take mtx, there are other options, enbrel, kineret,

remicade. I know they are new drugs and people worry about possible

effects, but the stills and the joint damage can be a hundered times more

worse than the possible side effects from the meds.

My big thing is early aggressive treatment with at least one of the new

biologic agents, possibly also mtx to get into remission then slowly remove

the prednisone, and mtx and the hopefully the biologic agent.

[Guest guest]

" I think on this drug, on year may not be often enough to catch

damage... "

The damage I mentioned would be from uncontrolled Stills, not Plaquenil.

-Brent

Re: Plaquenil

Same here, my doc said an eye exam every six months while I was on plaq.

the drug did not help me either.

Those dreams on prednisone are something else, I tend to call out to

people in those dreams and it wakes my husband. Course in the daytime I

am always hollering to someone about something anyway, I guess I figure

no one else can hear either, lol.

C J wrote: Then both my Opthamologist and my Rheumatologist

required visits every 4-6 months to be sure the Plaquenil was not doing

damage. I think on this drug, on year may not be often enough to catch

damage...

[Guest guest]

Thanks again guys. It sounds like the Plaquenil really isn't aggressive

enough. I will definitely revisit this issue at my visit in a couple of

weeks.

[Guest guest]

Dear ,

I am on Plaquenil and have been on and off of it for a long time. It helps

a little. It seems to help the most when combined with other meds. I doubt

it would do much if this was the only med someone was on. I don't think it

is that powerful of a med. I haven't had any side effects from it.

The Plaquenil could take up to 3 months before you get the full affect from

it. This med can be so subtle that it is easy to think it isn't doing

anything. I thought this and stopped it for awhile. I was worse when I was

off of it. Not worse in an earth shattering way but enough to notice a

difference.

I thought you may want to hear some positives about this med. I hope it

helps you.

Love,

jatw@...

[Guest guest]

Hi, ! I've been on Plaquenil for 5 months. The first couple of doses I

felt like I had headaches for about an hour after each dose; I also felt like

my vision was a little distorted (double vision?) for just a few minutes each

time. But, that went away rapidly and I haven't had any problems since. I

also started at a lower dose though (200 mg/day); now I'm on 400 mg/day.

Don't know if the lower dose caused less side effects. But I still am not

having any problems on it, so it probably depends on the person taking it.

Also, someone else (I think it was Chris) mentioned still having eye

problems. I believe Plaquenil has a 40 day after-life (until it leaves your

body); but I don't know how long after that it can effect you.

Also, , did you get an eye exam before you started the Plaquenil? If

not, you should get a field vision screening and then get it redone in 6

months to make sure your eyes have not been effected.

OK, sorry if I am being didactic. It is almost midnight and for some reason

I allowed my 7 year old daughter to have a sleepover. I am wide awake and

hiding in the basement praying they all go to sleep already!!! So, 1) I hope

this email makes sense; 2) i hope I haven't given you new things to worry

about! If you have any questions, please write and I'll try and explain!

Be well,

[Guest guest]

Dear Debby,

Again, mixed messages. My GI said the plaquenil is probably what kept my liver from getting worse sooner. When they thought lupus was "lupoid hepatitis", plaquenil was the drug of choice, according to my GI who has been in the field about 30 years.

My rhuemy had me stop cold turkey when she put me on prednisone and immuran for a difficult lupus flare but the immuran did me in. So she gives me the plaquenil, 200mg 2x daily and I just recently dropped to 5 mg. predisone after a year ago being on 40 mg.

Hope this helps.

Amy

[Guest guest]

This is a great response Jan. I have never heard of plaquenil being

associated with liver problems, either. I know people who are on both

it and Imuran, but none of them have liver problems. I've been trying

to figure out why the gastro was so adamant that she not mix the two.

As far as I've been able to research, there are no immunsuppressant

properties to it. And, yes, eye problems are a rare side effect. This

discussion has piqued my interest, though. I'll keep looking. Thank

you. Laurie

[Guest guest]

Good luck on the search Laurie...i have looked extensively for the same

thing..... I think that Dr. is nuts...If you find a link let me

know...please? From what I have seen Plaquenil is a pretty good and safe

drug...maybe that doc doesn't have a computer.

love jerry

[Guest guest]

Jan...well of course you are " upside down "

on this.....jeeeeez that goes without saying....

Wow you sound very educated today, are you feeling better for a

change....I hope so...you don't need anymore stufff happening to you.

It's hard enough probably , just keeping your toes dug in.

Thanks for the good comment...

love jerry

[Guest guest]

Hi!

I think most medications say something about liver disease with them - probably to make people think before they prescibe it. I've mentioned this before, because I also think it's interesting, my GI who did his grad. work on liver diseases about 25-30 years ago told me that plaquenil was the original drug used for 'lupoid hepatitis".

Before AIH was determined to be a separate illness, it was thought to be related to lupus, thus called 'lupoid hepatitis". Now of course more is known and prednisone and other meds have been successful in the control of AIH. At the time I was on plaquenil only so he left me alone because it was controlling the numbers and I was feeling okay. He didn't want to add more meds until necessary, which of course has happened. It's an interesting detail that maybe only the "seasoned" heps and GI would know.

Amy

[Guest guest]

Amy,

I carried the diagnosis of lupoid hepatitis for a few years in the early 80's.

Patty

-----Original Message-----From: holzboog@... [mailto:holzboog@...] Sent: Friday, June 20, 2003 2:26 PM Subject: [ ] Re: PlaquenilHi! I think most medications say something about liver disease with them - probably to make people think before they prescibe it. I've mentioned this before, because I also think it's interesting, my GI who did his grad. work on liver diseases about 25-30 years ago told me that plaquenil was the original drug used for 'lupoid hepatitis". Before AIH was determined to be a separate illness, it was thought to be related to lupus, thus called 'lupoid hepatitis". Now of course more is known and prednisone and other meds have been successful in the control of AIH. At the time I was on plaquenil only so he left me alone because it was controlling the numbers and I was feeling okay. He didn't want to add more meds until necessary, which of course has happened. It's an interesting detail that maybe only the "seasoned" heps and GI would know.Amy

[Guest guest]

Does anyone know of problems CFS/Lyme patients have had in taking plaquenil?

What is the dose and do some take a lesser dose? I'm going to add it to the

doxycycline.

What is a good source on the web for more info. on it?

Thanks,

Joyce Waterhouse, Ph.D.

members.aol.com/SynergyHN

[Guest guest]

Dear Traci,

There are many of us on plaquenil for other illnesses. My liver drs. have never questioned it. Did you get a lupus diagnosis? I use it for both lupus and sjogrens and it is very helpful with the aches and pains.

Good luck,

Amy

[Guest guest]

Plaquenil is an excellent drug but it takes a while to reach full

effectiveness. The doctor will tell you to get eye exams every 6

months to make sure the drug isn't causing damage, but it's just a

precaution; damage has only been reported in the larger dosages used

for malaria, so don't worry about it (but get the exams, of course).

I've been on plaquenil for something like five years. Twice I have

decided it was useless and stopped it, only to flare a month or so

later when it left my system, so even with the other drugs I take

(including Enbrel), the plaquenil does its job well. Good luck!!

Elisheva

(JRA since age 6)

> Had an appt with my son. Dr is thinking of starting him on

Plaquenil. Anyone

> have experience with it they can share? ( 11 still's)

[Guest guest]

Hi ,

My son also has systemic onset JRA. He was diagnosed 9 years ago

and has been taking Plaquenil/Hydroxychloroquine for more than 7 years.

He currently takes 200mg a day, though for the first few years we split

each pill for 100mg a day dosing.

As far as I know, it's one of the mildest and least toxic of arthritis

meds. Although there was some talk at the AJAO Conference just last

week, about it being contraindicated in those with systemic JRA, I have

not been able to locate any sources yet that verify that information.

Nothing in the recent literature, to my knowledge, and nothing that I

could find in past journals and medical publications either ... so I,

personally, am not worried.

I plan to ask my son's doctor about it when we see him this Friday, to

see if he's heard anything. I do trust, though, that if he had learned

some new information about possible adverse reactions that he would have

advised us to discontinue taking it already. It's hard for me to judge

its' effectiveness, as my son has always taken a combination of several

meds. Plaquenil is one that he's taken continuously, along with

Methotrexate and an NSAID and, until recently, prednisone. He had severe

and very difficult-to-treat disease onset and course, which has finally

begun to quiet down.

Plaquenil, though, is the medication that I would feel most comfortable

about his tapering or discontinuing right now, as I begin to think more

realistically about my son possibly being able to decrease and/or

discontinue his meds. Being able to get off the steroids, finally, was

such a huge milestone for us. He also just reduced his MTX dosing, down

to every other week, and things are still going well. I can't believe

this is our current reality but it may very well be time to start

weaning him off the meds that have been a part of his daily life for

nearly a decade No matter how hard it may be at times, there is

always hope that things can get better!

Good luck. I hope your son will have a positive response to the

Plaquenil. Please keep us updated on how things go.

Aloha,

Georgina

linnie34200 wrote:

> Had an appt with my son. Dr is thinking of starting him on Plaquenil. Anyone

> have experience with it they can share? ( 11 still's)

[Guest guest]

Hi ,

My daughter is nine and has been taking Plaquenil almost 5 months

now. After a couple of months we noticed that the flares were coming

alot less often. She has had a great summer and other than a week

with a flare that forced her to bed-rest she has been acting like any

other girl her age.

We haven't noticed many side effects. She does have sunlight

sensitivity, primarily on her face and neck. Sunblock doesn't offer

any protection against this, so we just try to keep her out of the

sun during the mid afternoon and she wears hats to protect her face.

She also bruises very easily. She gets lots of questions about her

bruised up legs but she really has no idea how they happen because it

just doesn't take much for her to get a severe bruise.

Overall, these side effects are quite minimal considering her health

has had such a dramatic improvement.

As a side note we also give Aundrea a multi-vitamin daily and she

takes fish oil daily. We also increased omega 3 foods in her diet.

(salmon, tuna, fruits, leafy veggies.)

I wish you the best of luck and hope this treatment is effective for

your son.

mom to Aundrea age 9 jra unspecified-

-- In , " linnie34200 " <ldolan34@o...> wrote:

> Had an appt with my son. Dr is thinking of starting him on

Plaquenil. Anyone

> have experience with it they can share? ( 11 still's)

[Guest guest]

Hi ,

My son, who has systemic JRA, has been taking Plaquenil for 8 years.

Uneventfully. He sees the eye doctor at least twice a year (usually

more) for dilations and slit lamp exam, peripheral vision testing, and

.... I always forget what it's called ... the test where they look at the

pages of a book to see if they can distinguish the patterns 'hidden' on

the pages. Since he's been taking Plaquenil since he was about 7 years

old and may take it for a long while more (he's only been off of it

once, very briefly) he may be at an increased risk of being in that

around-2% of patients who may perhaps experience retinal effects. The

doctor has assured us that we will be able to deal with it, if it comes

up. The damage is reversible when caught early and the medication

discontinued.

Try not to worry too much.

Aloha,

Georgina

PS ... how did you come up with your screen name? It sounds almost

Hawaiian. One of my son's friends is named Kaleka and everytime time I

see your screen name it reminds me of him.

Kelleka wrote:

> After reading the responses, I'm not nearly so worried about this. Thanks!!

I also then called the opthamologist, and she said that she hadn't seen any

problems in her practice with this drug. She said Krystal would need to come in

4 times a year, but initially, she wanted to see Krystal 2 months after starting

the meds if they do put her on it.

> So I'm feeling more confident. Krystal is anxious to start taking

something--at this point she doesn't care what it is. We had a set back with

insurance in that they don't cover bars, etc. Those are considered not

medically neccessary. They did, much to the insurance rep's surprise, okay the

toilet riser. The way they coded it, allowed us to get the one with built in

bars. So we have to purchase the tub/shower bars.

> Thanks again for the info on plaquenil!

>

[Guest guest]

I was once on plaquenil & I remember it had some cautions - I had to have my eyes checked very often. The info below you might know already, but just incase, I know many doctors do not tell these things, I could not just let it go by without informing you about Plaquenil.

Jo Lynne post tx and PBC/AIH crossover currently

http://www.medcohealth.com/medco/consumer/ehealth/druginfo/dlmain.jsp?searchType=withPreLogic & topicID=DL & monoType=DL & navigation=0 & BV_SessionID=@@@@0590882649.1119395066-mm754402348398@@@@ & BV_EngineID=ccddaddemgmghlgcfklcgffdghfdfgh.0 & packageTemplate=DL+Search+Package & displayTemplate=DL+MedcoHealth+Search+Template & searchTerm=+plaquenil+

PLAQUENIL

Central nervous system agent

Active Ingredient:

Hydroxychloroquine Sulfate

Type of Drug:

Antirheumatic agent; antimalarial drug.

Uses:

For the treatment of acute or chronic rheumatoid arthritis. Hydroxychloroquine also is prescribed to prevent or treat acute attacks of malaria and for the treatment of chronic discoid and systemic lupus erythematosus (SLE).

Drug Interactions:

Tell your doctor or pharmacist if you are taking or planning to take over-the-counter or prescription drugs or dietary supplements with this drug. Drug doses may need to be modified or a different drug prescribed. The following drugs and drug classes interact with this drug:

beta blockers (eg, metoprolol)

cimetidine (eg, Tagamet)

cyclosporine (eg, Neoral)

digoxin (eg, Lanoxin)

hepatotoxic drugs (eg, acetaminophen)

magnesium salts (eg, Milk of Magnesia)

mefloquine (eg, Lariam)

phenylbutazone, gold compounds

Side Effects:

Eyes or Ocular: Visual difficulties or disturbances; blurred vision; missing or blacked-out areas in the visual field; light flashes and streaks; sensitivity to light.More at the link.

Lab tests may be required during treatment. Tests may include eye exams, blood counts, and knee and ankle reflex testing.

Notify your doctor immediately if you experience vision problems, hearing loss, ringing in ears, fever, sore throat, unusual bleeding or bruising, unusual pigmentation (blue-black) of skin or inside of mouth, skin rash, itching, unusual muscle weakness, lightening or loss of hair, or mood or mental changes.

May cause photosensitivity (sensitivity to sunlight). Avoid prolonged exposure to the sun or other forms of ultraviolet (UV) light (eg, tanning beds). Use sunscreens and wear protective clothing until tolerance is determined.

[ ] sjogren's -

The rhueumatologist put my sister on plaquenil 200 mg twice a day as soon as she was diagnosed. I am also on plaquenil, but I take it for lupus. The plaquenil does seem to help with my sister's sjogren's.