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Just my opinion, if your going to take a dmard i wouldnt take plaquenil. From what i have read, its not too good at controling joint damage. Maybe Methetrexate or Arava might be better choices. At least these drugs do control joint damage to some degree.

I made a tough decision last week and decided to try Arava. I was feeling pretty good on 6mg pred and 50mg vioxx, but i am worried about my feet as there is damage occuring there and i couldnt get the swelling down in my knees, though they were feeling better as well.

After the first 3pills , which are a high loading dose, i felt like i had poisoned myself, but now i feel ok, and in fact have no symptoms of ra as of this moment. I have no morning stiffness or aches of any kind. The swelling in my knees is subsiding as well.

So my limited knowlege is with Arava, you will get other opinons im sure.

rheumatic plaquenil

From: "Cybergate Mail" <abarron@...>

Hi all

A long time lurker here with a few questions. I'm 29 yrs old with RA, diagnosed for 2 years and on AP almost as long. Overall doing GREAT compared to where I was a year ago, energy, pain, fevers all improved about 90%. However, I do have some "swansneck"ing happening in my fingers and continued but interspersed pain and swelling in my knees and wrists. Just went for a doctor's visit and he suggested plaquenil to take care of the disease that's still there doing damage. I'm scared to death of this drug!!! What should I do? He's very conservative and we're always on the same page in terms of what we should be doing to attack the disease but he obviously feels I need a little something else. I am on minocin (lederle generic) 200mg every day but Tues and Sat when I take Biaxin. I'm also on Naprelan and glucosamine chondroitin and follow the diet fairly well.

I always have in mind what my next option should be but this time I'm stuck. Do I try doxy? IV's are pretty much out of the question. Anyone out there been on plaquenil with good experiences? I'm worried not so much about the eye troubles but degeneration of muscle that I've heard about.

Any insight you all could provide would be greatly appreciated. Thanks!!!!

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Hi,

I don't know what your name is because you didn't say at the end of your post.

If I were you I would stay away from the plaquenil. You might want to stop the glucosamine chondroitin for a while to see what happens. I was taking it for a while but my knees started getting stiffer. My doctor told me that it causes swelling in some people. That my not be the case for you, but you may want to stop it for a while and see if it makes any difference.

Pat / Pennsylvania

---- Original Message -----

From: Cybergate Mail

rheumaticonelist

Sent: Thursday, March 16, 2000 4:08 PM

Subject: rheumatic plaquenil

From: "Cybergate Mail" <abarron@...>

Hi all

A long time lurker here with a few questions. I'm 29 yrs old with RA, diagnosed for 2 years and on AP almost as long. Overall doing GREAT compared to where I was a year ago, energy, pain, fevers all improved about 90%. However, I do have some "swansneck"ing happening in my fingers and continued but interspersed pain and swelling in my knees and wrists. Just went for a doctor's visit and he suggested plaquenil to take care of the disease that's still there doing damage. I'm scared to death of this drug!!! What should I do? He's very conservative and we're always on the same page in terms of what we should be doing to attack the disease but he obviously feels I need a little something else. I am on minocin (lederle generic) 200mg every day but Tues and Sat when I take Biaxin. I'm also on Naprelan and glucosamine chondroitin and follow the diet fairly well.

I always have in mind what my next option should be but this time I'm stuck. Do I try doxy? IV's are pretty much out of the question. Anyone out there been on plaquenil with good experiences? I'm worried not so much about the eye troubles but degeneration of muscle that I've heard about.

Any insight you all could provide would be greatly appreciated. Thanks!!!!

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Guest guest

Hi All -

I'm curious, what is "swans-necking"? I have some strange things

going on with my fingers and hands the last 2 months and I'm wondering

if it's this.

Lea

Cybergate Mail wrote:

From: "Cybergate Mail" <abarron@...>

Hi all A

long time lurker here with a few questions. I'm 29 yrs old with RA,

diagnosed for 2 years and on AP almost as long. Overall doing GREAT

compared to where I was a year ago, energy, pain, fevers all improved about

90%. However, I do have some "swansneck"ing happening in my fingers

and continued but interspersed pain and swelling in my knees and wrists.

Just went for a doctor's visit and he suggested plaquenil to take care

of the disease that's still there doing damage. I'm scared to death

of this drug!!! What should I do? He's very conservative and

we're always on the same page in terms of what we should be doing to attack

the disease but he obviously feels I need a little something else.

I am on minocin (lederle generic) 200mg every day but Tues and Sat when

I take Biaxin. I'm also on Naprelan and glucosamine chondroitin and

follow the diet fairly well. I

always have in mind what my next option should be but this time I'm stuck.

Do I try doxy? IV's are pretty much out of the question. Anyone

out there been on plaquenil with good experiences? I'm worried not

so much about the eye troubles but degeneration of muscle that I've heard

about. Any insight

you all could provide would be greatly appreciated. Thanks!!!!

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Guest guest

Plaquenil prevented all joint damage in me. I have no deformities except

in one toe and my rheumo told me that my bones and joints are better than

9/10th of the people he has seen.

Plaquenil has worked wonderfully for me and when I tried to go off of it

while on the AP I slipped backwards so I know the plaquenil was helping. My

eye exams are good and my muscle tone was great while on it 9 for the three

years before I started the AP) but I lost the muscle while on the AP as I

had two very rough years when I started the doxi. I have been on plaquenil

for five years.

At 05:18 PM 3/16/00 -0500, you wrote:

> From: " " <>

>

> Just my opinion, if your going to take a dmard i wouldnt take

>plaquenil. From what i have read, its not too good at controling joint

>damage. Maybe Methetrexate or Arava might be better choices. At least

>these drugs do control joint damage to some degree. I made a tough

>decision last week and decided to try Arava. I was feeling pretty good on

>6mg pred and 50mg vioxx, but i am worried about my feet as there is damage

>occuring there and i couldnt get the swelling down in my knees, though

>they were feeling better as well. After the first 3pills , which are a

>high loading dose, i felt like i had poisoned myself, but now i feel ok,

>and in fact have no symptoms of ra as of this moment. I have no morning

>stiffness or aches of any kind. The swelling in my knees is subsiding as

>well. So my limited knowlege is with Arava, you will get other opinons im

>sure. rheumatic plaquenil

>From: <abarron@...>

>

> Hi all Thanks!!!!

>

>

>

>

>

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Guest guest

: My doc. is sort of pushing plaquenil too, so I am v. interested in

your reply. He says the drug as been around 50 years and is one of the

safest we have.

Anyway, do you still take plaquenil? I couldn't tell from your message. Is

it something people stay on a long time? What age (and how bad) were you

when you got on plaquenil and how much better and how many years later when

you got off? Why did you switch to AP? Or maybe you are on some combination

of these drugs?

Thanks, Pam

rheumatic plaquenil

> >From: <abarron@...>

> >

> > Hi all Thanks!!!!

> >

> >

> >

> >

> >

>

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/0/_/532797/_/953350215/

> ------------------------------------------------------------------------

>

>

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  • 2 weeks later...
Guest guest

I didn't have that reaction. I only took it for a few months last year that I recall. I quit taking it because I didn't like the idea of it affecting my eyes. I can't say it did anything for me, but then I didn't take it that long.

Bev

I just started plaquenil a week ago and am experiencing severe fatigue, stomach upset, and moodiness. Anyone that's been on plaquenil have these symptoms at first? How long did they last?

Thanks

Diane

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Guest guest

NO side effects here. I knew that it could cause stomach upset at first,

but never heard of the other two. As a matter of fact about three weeks

after I started it I felt great.

NO eye problems here after almost 6 years.

At 01:47 PM 3/31/00 -0500, you wrote:

> I can't say it did anything for me, but then I didn't take

>it that long. Bev Thanks Diane

>

>

>

>

>

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Guest guest

Hi Dianne ! I took plaquenil for a couple of weeks and then, got vertigo real bad. When I would lay down, and suddenly turn on my side or sit up too fast , my head would spin and I would lose my sense of balance. It was awful -- I stopped taking it and it cleared up in a couple of days. Just reinforces what everone's been saying about different reactions from different individuals. I have a friend who's been taking plaquenil for years with no noticable side effects. GO FIGURE !!!! Dean

rheumatic Plaquenil

I just started plaquenil a week ago and am experiencing severe fatigue, stomach upset, and moodiness. Anyone that's been on plaquenil have these symptoms at first? How long did they last?

Thanks

Diane

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  • 1 year later...

In a message dated 11/22/2001 10:09:32 AM Eastern Standard Time, roseanne@... writes:

"Well, I guess you are young and have some time before damage starts from the Plaquenil." That comment was not so reassuring!

My first rheumy wanted to put me on this and said I had to first have a "base line" eye test done. When I asked what it was for, he said it was to determine any damages that may occur once I started on Plaquenil. Yikes. Good for me that I found out on my own that Plaquenil was contraindicated for one of my illnesses, anyway, and I could not take it. (no thanks to the uninformed rheumy...the jerk).

Babs

RA 8/98, DX 4/99, AP 11/99

100 mg. Doxy, 100 mg. Minocin

125 mcg. Synthroid

2 mg. Hytrin

Mestinon

Vits. & Misc. Suplmts.

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> In a message dated 11/22/2001 10:09:32 AM Eastern Standard Time,

> roseanne@s... writes:

>

>

> > " Well, I guess you are young and have some time before damage

starts from

> > the Plaquenil. " That comment was not so reassuring!

>

> My first rheumy wanted to put me on this and said I had to first

have a " base

> line " eye test done. When I asked what it was for, he said it was

to

> determine any damages that may occur once I started on Plaquenil.

For most of these " conventional drugs " , I would recommend you go to

alt.support.arthritis and do some reading there. Most of the people

on that list use the conventional drugs and have a lot more

experience with them. If you go there, you might click on the topic -

Plaquenil - Any advice? You'll find that in the vast majority of

people, very few have side effects. You do monitor every 6 months

but it is really pretty benign. Apparently does take about 4-5 months

to become effective, however. You can go to www.google.com and

select groups and then type in plaquenil which will lead you to all

kinds of comments. One of them I copied below (just remember that

this experience was THIS person's experience - we're all different

and we all react differently)

Mark

RA 4/98

" I've been on Plaquenil for about 8 years, and it has been very

helpful

for me. I do get my eyes examined every six months, but there is no

sign of damage and the opthalmologist tells me that they are finding

there aren't as many cases of eye damage as they had originally

expected.

My only problem is that the generic Plaquenil gives me severe

diarrhea,

so my RD prescribes only the brand name product.

My fingers are still relatively straight, and the doctors are amazed

at

that because I have so much large joint damage. They attribute the

good

fingers to Plaquenil. However, I have had several large joint

replacements in the last 8 years, so the Plaquenil hasn't been able to

stop that deterioration - although it may have helped to slow it

down.

We can never be sure.

I can't take NSAIDs because they all seem to upset my stomach, so I

have

been using only Plaquenil for most of the past 8 years, and narcotic

pain killers for the really bad days.

Recently I have begun having severe flares again, so it will be

necessary to add another drug or two to control the arthritis better.

Plaquenil is the easiest DMARD to tolerate, so now I have been looking

at some stronger ones with a lot more side effects. I've tried one or

two of the new medications and find I don't get along with them at

all.

I understand your hesitation at taking a new medication; I hesitate

every time I am given a new one to try. However, I would like to

reassure you that Plaquenil is the least harmful of DMARDs, and with

careful monitoring you should have no eye problems. If eye problems

do

begin to develop, get an eye exam right away. My opthalmologist tells

me that if they catch the damage right away it can often reverse

itself

once you stop taking the Plaquenil. I have also been given a chart to

keep at home (it's full of squares) and do self-exams regularly.

Apparently any dangerous eye changes will show up right away and I can

make an appointment with my opthalmologist for a confirming exam.

One important thing to remember is that Plaquenil does not go to work

right away. It has to build up in your blood, and could take up to 6

months to really kick in. "

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  • 1 month later...

> Would anyone who has used or is knowledgeable of the use

> of Plaquenil for RA please let me know of their experiences

> or information. It does not appear to be an immune-suppressive

> drug. The RX indicates it's a malaria cure and lists the

> malaria organisms it affects. It also says the reason it

> mediates RA is unknown. Could it be that it is affecting

> a mycoplasma infection?

> Thank you.

> Vern

All I know is that you need to have your eyes checked yearly if you

go on this (although apparently the risk is quite small) and it takes

about 4-5 months to start working, so if you're in a lot of pain now,

that might not be the best choice. Like a number of RA drugs, not

surprised they don't know exactly how it works, just that it seems to

have a positive effect in some people.

Sorry I couldn't be of more help. :( (I should note that a recent

rheumie I went to recommended that I combine this with my

methotrexate - I chose to try minocycline instead)

Mark

RA 4/98

http://www.pbase.com/athiker95

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Vern,

I would never consider taking plaquenil or methotrexate -- though I

was on MTX briefly because of a dire diagnosis concerning my eyes.

Some use is without the effects I had. I literally felt like someone

had beaten my body with a hammer. As to plaquenil, eyes are much too

important to play around with that drug, IMHO, when AP usually does a

great job for us.

bg

> > Would anyone who has used or is knowledgeable of the use

> > of Plaquenil for RA please let me know of their experiences

> > or information. It does not appear to be an immune-suppressive

> > drug. The RX indicates it's a malaria cure and lists the

> > malaria organisms it affects. It also says the reason it

> > mediates RA is unknown. Could it be that it is affecting

> > a mycoplasma infection?

> > Thank you.

> > Vern

>

>

> All I know is that you need to have your eyes checked yearly if you

> go on this (although apparently the risk is quite small) and it

takes

> about 4-5 months to start working, so if you're in a lot of pain

now,

> that might not be the best choice. Like a number of RA drugs, not

> surprised they don't know exactly how it works, just that it seems

to

> have a positive effect in some people.

>

> Sorry I couldn't be of more help. :( (I should note that a recent

> rheumie I went to recommended that I combine this with my

> methotrexate - I chose to try minocycline instead)

>

> Mark

> RA 4/98

> http://www.pbase.com/athiker95

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It worked well for me for about three years when I took it alone. I still

take it along with doxi. I did not have visible joint deformity until I

lowered the dosage myself. Now I am having problems with deformities of my

fingers and toes. The visible damage has occurred over the past year.

Plaquenil was easy to take with no side effects. I wish I had never

decreased the dosage as Dr. Franco told me to continue as I was until the

blood work returned to normal..I just didn't listen. I have since

increased my doseage back.

I doubt it has anything to do with dealing with myco infection.

There is a retinal side effect but I have read it is extremely rare. I had

a visual field once a year and have had no problems with my visual field.

At 02:28 PM 1/17/2002 +0000, you wrote:

>Would anyone who has used or is knowledgeable of the use

>of Plaquenil for RA please let me know of their experiences

>or information. It does not appear to be an immune-suppressive

>drug. The RX indicates it's a malaria cure and lists the

>malaria organisms it affects. It also says the reason it

>mediates RA is unknown. Could it be that it is affecting

>a mycoplasma infection?

>Thank you.

>Vern

>

>************************

>Please disregard the link to my ISP!

>http://www.bealenet.com

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

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> It worked well for me for about three years when I took it alone. I

still

> take it along with doxi. I did not have visible joint deformity

until I

> lowered the dosage myself. Now I am having problems with

deformities of my

> fingers and toes. The visible damage has occurred over the past

year.

> Plaquenil was easy to take with no side effects. I wish I had

never

> decreased the dosage as Dr. Franco told me to continue as I was

until the

> blood work returned to normal..I just didn't listen. I have since

> increased my doseage back.

>

> I doubt it has anything to do with dealing with myco infection.

>

> There is a retinal side effect but I have read it is extremely

rare. I had

> a visual field once a year and have had no problems with my visual

field.

>

>

Thanks for pointing out these facts . Like most of us, we all

prefer that minocycline or doxy alone does the trick, but for some of

us with more aggressive disease, it sometimes takes bigger guns to

prevent early damage. Unlike you, I chose to listen to my doctor who

suggested I quit Metho since I was doing so good - big,big mistake.

Have more problems now than I've ever had. Have added minocycline to

the methotrexate over the last month (since once you stop metho, it

is sometimes not as effective the 2nd time around at the original

dosage levels) which calmed the situation back down, although in the

last week have seen my colon act up (gas,constipation - all that fun)

and I'm not sure what is causing that. I boosted my acidopholus

intake and stopped the mino for a few days - feel somewhat better

now, but my arthritis is flaring back up again. I think the mino and

metho were working synergistically together to control my arthritis

or that's my guess anyway (that's a theory anyway), although just

stopping mino for a few days, you wouldn't think would flare my

arthritis. Boy , this disease can be a puzzle on some days.

Again,I'm all for treating this disease in the safest manner possible

and I envy everyone who can whack it with mino alone (which doesn't

seem to be very many since everyone here is constantly searching for

things beyond minocyline), but at the same time, I think all the

fears mentioned here are from reading drug side effect potentials

when in reality that is not what has been discovered in clinical

practice. There is a reason why methotrexate is the most commonly

prescribed drug for RA and it's not because it kills everyone. With

all these drugs, there is a risk, but in most cases it is quite small

(no solace for those who experienced side effects, I assure you).

Personally, I am willing to take certain risks to maintain quality of

life, because being unable to even move, sit, get up is not my idea

of a way to live and I've been there. Being unable to function for

even a few days is not something I care to endure, let alone weeks

and months, which I recently endured.

Mark

RA 4/98

Metho 17.5mg/week; Minocycline 100mg (bid) MWF

(or sometimes daily with occasional days off)

Lodine 400mg tid (or as needed)

Vitamins with lots of antioxidants

http://www.pbase.com/athiker95

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  • 9 months later...

Hi Annette,

I stopped it cold turkey with no negative effects. However, I never had

any positive results from it either while I was taking it which is

perhaps why I had no problem going off it cold turkey.

Hugs

a

shokudo2000 wrote:

>

> Hi Group,

>

> Does plaquenil have to be slowly weaned off like prednisone, or can

> you stop cold turkey?

>

> Annette

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Hi Annette,

I went off cold turkey...Had to....I had an allergic reaction to it

after 3 months...a very bad reaction...No side effects to going off

it cold turkey...In fact to me it was a blessing that I had this

reaction...Thay's what put me on AP,

Love, Barb

> Hi Group,

>

> Does plaquenil have to be slowly weaned off like prednisone, or can

> you stop cold turkey?

>

> Annette

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  • 3 years later...

I Have heard good things about Dr. Franco. He'll get your wife on the right

track. This disease knows no age limits. I am 70 and went on A/P 10 months

ago. And I'm doing well. Dolores

phillipstradling <phillipstradling@...> wrote: My wife was also diagnosed

with MCTD. The Doctor put her on plaquenil

(200mg twice a day) and 10mg of prenisdone. She's been on it for about 3

months. It seems to help. She wants to get off of the prenisdone, and she

is now down to 5 mg per day. We have made an appointment to Dr. Franco in

Riverside, California, to investigate the Antibiotic Therapy. It seems that

it might me less toxic to the body and do a better job towards remission.

She also has Raynauds. My wife is 67 years old. I wonder if that is old to

get this problem so suddenly just seven months ago. Phil S.

rheumatic plaquenil

>I just recently started plaquenil for MCTD. Does anyone know how

> effective this is and if there are any better treatments? I just have

> joint pain and swelling at the moment as symptoms and also Raynauds.

> Any help would be great.

>

>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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Hi,

I''ve been on plaquenil for a little over 2 months and

it seems to be working well for me. I was on

prednisone which helped my feelings of weakness but

did nothing for the swelling. I stopped the prednisone

and started plaquenil. It helped with the swelling in

short order. The weakness, however, took longer to

respond. I've also been on Methatrexate for 3 weeks

(small dose). I'm waiting to see if it stops the joint

damage. All my labs are negative. HA! Tell it to my

joints....Maureen

--- dsaamcbee <dsmcbee1@...> wrote:

> ,

> I take plaquenil and have for over a year now. It

> took awhile (about

> 2 months) to start helping me get back to a more

> normal condition.

> However, it has helped me more than I can say. It

> gave me my life

> back. I was on two pills a day but have cut myself

> back to only one

> pill a day b/c I found that I had diarrhea often.

> Since cutting back

> to one pill a day, that problem has cleared up. I

> started the mino

> two months ago. So far, I haven't seen any changes

> at all. I'm about

> the same. I am on a low dose of mino so I may need

> to change doses.

> My problem is I haven't rec'd a confirmed diagnosis

> yet. As a matter

> of fact, my labs are normal. It's quite depressing

> at times to know

> that I am in this much pain and have no diagnosis!

> I'm going to the

> doc in a couple of weeks and I plan to have all labs

> done again and

> I'm having a test for AS done as well. I'm just

> hoping I get a name

> for this 'condition' soon. I don't know if

> plaquenil is what you need

> but it has helped me. I wish I could take two pills

> a day b/c that

> helped me more than one but the side effects were a

> problem. Good

> luck to you.

> Serena

>

>

>

>

>

>

> >

> > I just recently started plaquenil for MCTD. Does

> anyone know how

> > effective this is and if there are any better

> treatments? I just

> have

> > joint pain and swelling at the moment as symptoms

> and also

> Raynauds.

> > Any help would be great.

> >

> >

> >

>

>

>

>

>

__________________________________________________

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I think it is helping me as well. I am going to give it a shot for

a while and maybe talk with my doc about the minocin when I see him

in December. I am more comfortable with the Plaquenil than I was

with the Methotrexate at least. Not to mention I don't think the

Methotrexate helped me at all. That is why I stopped it.

> > >

> > > I just recently started plaquenil for MCTD. Does

> > anyone know how

> > > effective this is and if there are any better

> > treatments? I just

> > have

> > > joint pain and swelling at the moment as symptoms

> > and also

> > Raynauds.

> > > Any help would be great.

> > >

> > >

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

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I did very well on the plaquenil with small doses of prednisone for almost

three years. Then like all meds, it stopped working in spite of increased

doses. Somewhere I read it works in a way similar to antibiotics. If this is

so, and I am one who did really well on Minocin (and still does), perhaps

there might be a correlation. If you have done well on Plaquenil, your chances

of doing well on minocin are greatly increased?? I would certainly consider

adding the minocin to the Plaquenil. I was able to drop off predisone after

one month, and then dropped the plaquenil after the second month. Five years

later (almost six) life is still great. Martha

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  • 3 years later...

Hi Ellen.

     Welcome to our wonderful group of caring, loving and well informed

members.  I have been on Placquenil for 6 years with success.

 

    What other meds. does your Rheumy have you on?  There is light at the

end of the tunnel.  It just takes awhile before we know if each medicine is

helping us.  I sure hope your Rheumy is treating your RA agressively.  I hope

you will be feeling better soon.  Try to rest as much as you can, because RA

makes us so very tired.

 

    Again, welcome here.

 

Hugs,

 

Barbara

From: EllenSangWildfeuer <LNWILD@...>

Subject: [ ] Plaquenil

Date: Monday, September 27, 2010, 8:02 PM

 

Hi all--Newly diagnosed with RA--started on Plaquenil 10 days ago--how long

before I should feel any better? Doc mentioned a month--swelling and lack of

function driving mer nuts. Is there any relief insight? ELLEN

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Hello Barbara--Many thanks for your reply. I am not on any other drugs except

an NSAID (Relafen) as I refused to start Methotrexate right away. As an RN I

have seen the ravages of MTX and don't want to do that except as a last resort.

I just finished with an 18 month course of Prednisone(life and body and mind

altering drug) due to Polymyalgia Rheumatica--weaned off Pred in May and now

this. I am very disheartened that I will ever feel well again. ellen

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Hi Group:

Reading these posts about Plaquenil. Is this a drug added when you get

breakthru's of RA thru the other meds? My Rheumy never talked to me about this

med and I was wondering if its a first-try drug, or something added later to

enhance other meds?

Can someone tell me what it does?

Thanks

OKD

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Hi Ellen and welcome to the list!

I felt relief from Plaquenil after 6-8 weeks. I had to go off it due to

Plaquenil toxicity attacking my retina after 4 months so please don't forget

those visitis with your ophthamologist!

Are you on any other meds?

Best of luck to you!

Kami

From: EllenSangWildfeuer

Sent: Monday, September 27, 2010 8:02 PM

Subject: [ ] Plaquenil

Hi all--Newly diagnosed with RA--started on Plaquenil 10 days ago--how long

before I should feel any better? Doc mentioned a month--swelling and lack of

function driving mer nuts. Is there any relief insight? ELLEN

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