Plaquenil

[Guest guest]

Hi Stania -

thanks for this insight. I've decided to hold off on

the Paxil, Ambien, and Plaquenil for now, as my

internist has just increased my Transfer Factor dose

and I want to see what happens. I'm also adding a

homeopathic remedy this week which I've had good luck

with in the past. So we'll see how it goes.

Best, Jennie

--- Stanislava Mu?íková <stanislava.muzikova@...>

wrote:

> Jennie,

> I got Delagil (similar to Plaquenil - Plaq is better

> tolerated by IG tract)

> and never experienced any side effects. I was

> checked by an opthalmologist

> after 6months and she told me they see retinal

> problems after much longer

> time (if any). It may help you and it decreases NO

> (which is good, remember

> Dave ?)

> Stania

__________________________________________________

[Guest guest]

Dear Everyone,

I have a question. A friend of mine who has CFS but some of the signs of

Sjogrens (the " dry " disease, an autoimmune disease) but none of the blood

signs was given plaquenil, a disease modifying drop, to try a help her

illness. Ostensibly it was for the possible Sjogrens, but as she, like me,

suffers with lowgrade fever for a long time (for her it's already over two

years plus) and she also has the exhaustion and joint pains, she wanted to

know if any of you were given this medication for CFS. She figures that if

it is given for the dry eyes, dry lips and joint pains and fever and

exhaustion of Sjogrens, why shouldn't some doctor have tried to give it for

CFS as well. I told her I would ask on this list because here in Israel most

doctors treating CFS are very very conservative in their treatments.

Experimental treatment is almost unknown. So please give us some input here,

maybe she has come up with something... who knows...

Thanks.

Judy B.

Re: National CFIDS Foundation Memorial List

> On the Cardiac thing, I had arhythmias and shortness of breath, angina,

> etc.. (no passing out) earlier this year. They seem to have gone

> completely away. I've posted on this quite a few times, but will do it

> again anyhow.

> I would imagine that there's more than one cause of heart SX in

> CFIDS/ME. For one, many inllular pathogenes implicated in our

> disease are known to have an affinity for the heart tissue- Lyme

> (especially Lyme), chlamydia pneumonia, Q-fever, and some of the

> viruses.

> What I think happened to me, is the blood alkalosis problem, in which

> tissue acidosis causes the blood to be too alkaline i.e. too little CO2,

> which causes an oxygen transport problem because CO2, which everyone

> thinks of as a waste gas, plays a critical role in release of Oxygen off

> the blood hemoglobin that carries it and into the tissues where it is

> needed. If you go the emergency room with shortness of breath they do

> an oxygen saturation test. Mine came out normal, and I was told that my

> breathing problem was " percieved " . What I think happened was that the

> brain started to slow down the breathing response in order to boost CO2

> levels. Of course the heart needs O2 to function also, and it never

> rests.

> I decided this was my problem and followed Cheneys recommendation of

> whey protien (immunepro) to correct the tissue acidosis/blood alkalosis

> problem by replenishing glutathione levels. I've also gathered that

> Magnesium is VERY important to the heart muscle. It seems to me that

> anyone with heart troubles should be on a lot of magnesium. I suggest

> looking into IM or IV injections of magnesium sulfate. It is

> inexpensive, and you know it is not just passing through your bowel

> unabsorbed. I do both IM and oral magnesium glycinate. IM I've done up

> to 1 cc a day and orally as much as 1200 mg. day usually 400 mg. My

> doctor told me to take oral mag. to bowel tolerance. I'm still planning

> to return to the mag. IV's but haven't yet. (To read about the use of

> mag. IV's in angina, stroke, periferal vascular disease, and heart

> attack do a google search using the key words Dr. Browne and magnesium.

> Magnesium is beneficial to us in other ways too (neuroprotective for

> one) and very non-toxic.

> Another possibility for cardiac abnormalities is in the realm of

> neuro-cardiogenic-syncope, and the dysautonomia. I don't know much

> about these even though I was diagnosed with the syncope problem, I

> don't believe the diagnosis was correct and quit the small dose of beta

> blocker prescribed to me a long time ago. The disautonomia is supposed

> to be improved by bouncing via the bounce back chair or a mini

> trampoline, etc...

> Good luck all

> E.

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Hi Judy -

I have not yet tried Plaquenil. However, when I

tested positive for lupus last year I went to a

rheumatologist who suggested it for my joint pain. I

also have the dryness symptoms you mentioned. My

doctor says it is very safe and works very well for

these symptoms. If my pain continues as it has lately

(pretty severe in my joints) I'm going to ask her for

a trial run.

That's all I know for now - Jennie

--- judy <baumelj@...> wrote:

> Dear Everyone,

> I have a question. A friend of mine who has CFS but

> some of the signs of

> Sjogrens (the " dry " disease, an autoimmune disease)

> but none of the blood

> signs was given plaquenil, a disease modifying drop,

> to try a help her

> illness. Ostensibly it was for the possible

> Sjogrens, but as she, like me,

> suffers with lowgrade fever for a long time (for her

> it's already over two

> years plus) and she also has the exhaustion and

> joint pains, she wanted to

> know if any of you were given this medication for

> CFS. She figures that if

> it is given for the dry eyes, dry lips and joint

> pains and fever and

> exhaustion of Sjogrens, why shouldn't some doctor

> have tried to give it for

> CFS as well. I told her I would ask on this list

> because here in Israel most

> doctors treating CFS are very very conservative in

> their treatments.

> Experimental treatment is almost unknown. So please

> give us some input here,

> maybe she has come up with something... who knows...

> Thanks.

> Judy B.

__________________________________________________

[Guest guest]

Hi Judy,

I have been taking Plaquenil (hydroxycholoroquine) since July of last

year (200 mg/bid). Of course it is an " off label " use.

Rheumatologist did not seem to think that it was " that " experimental

as he has given it to many CFIDS/FMS patients. It does work for pain

and Sjogren's like Sx. It is very subtle and response is not usually

seen for several weeks. But when tracking arthalgia pain (scale of

1-10)on a graph there is a noticeable improvement after a couple of

months. On the cautions side, it can rarely cause irreversible

retinopathy, so my doc had me see opthomologist for baseline

opthalmoscopy and angle of visual acuity; repeat at six month

intervals. Opthomologist did mention that she had seen one Plaquenil

linked retinopathy in her 20 year career. Recent article in J

Rheumatol 2000;27 does discuss those risks. (Can be found in

Medscape. Search: hydroxychloroquine). I wish you well.

Steve :-D

> > Dear Everyone,

> > I have a question. A friend of mine who has CFS but

> > some of the signs of

> > Sjogrens (the " dry " disease, an autoimmune disease)

> > but none of the blood

> > signs was given plaquenil, a disease modifying drop,

> > to try a help her

> > illness. Ostensibly it was for the possible

> > Sjogrens, but as she, like me,

> > suffers with lowgrade fever for a long time (for her

> > it's already over two

> > years plus) and she also has the exhaustion and

> > joint pains, she wanted to

> > know if any of you were given this medication for

> > CFS. She figures that if

> > it is given for the dry eyes, dry lips and joint

> > pains and fever and

> > exhaustion of Sjogrens, why shouldn't some doctor

> > have tried to give it for

> > CFS as well. I told her I would ask on this list

> > because here in Israel most

> > doctors treating CFS are very very conservative in

> > their treatments.

> > Experimental treatment is almost unknown. So please

> > give us some input here,

> > maybe she has come up with something... who knows...

> > Thanks.

> > Judy B.

>

>

> __________________________________________________

>

[Guest guest]

Dear Steve,

Many thanks,

Judy B.

Re: Plaquenil

> Hi Judy,

> I have been taking Plaquenil (hydroxycholoroquine) since July of last

> year (200 mg/bid). Of course it is an " off label " use.

> Rheumatologist did not seem to think that it was " that " experimental

> as he has given it to many CFIDS/FMS patients. It does work for pain

> and Sjogren's like Sx. It is very subtle and response is not usually

> seen for several weeks. But when tracking arthalgia pain (scale of

> 1-10)on a graph there is a noticeable improvement after a couple of

> months. On the cautions side, it can rarely cause irreversible

> retinopathy, so my doc had me see opthomologist for baseline

> opthalmoscopy and angle of visual acuity; repeat at six month

> intervals. Opthomologist did mention that she had seen one Plaquenil

> linked retinopathy in her 20 year career. Recent article in J

> Rheumatol 2000;27 does discuss those risks. (Can be found in

> Medscape. Search: hydroxychloroquine). I wish you well.

>

> Steve :-D

>

>

> > > Dear Everyone,

> > > I have a question. A friend of mine who has CFS but

> > > some of the signs of

> > > Sjogrens (the " dry " disease, an autoimmune disease)

> > > but none of the blood

> > > signs was given plaquenil, a disease modifying drop,

> > > to try a help her

> > > illness. Ostensibly it was for the possible

> > > Sjogrens, but as she, like me,

> > > suffers with lowgrade fever for a long time (for her

> > > it's already over two

> > > years plus) and she also has the exhaustion and

> > > joint pains, she wanted to

> > > know if any of you were given this medication for

> > > CFS. She figures that if

> > > it is given for the dry eyes, dry lips and joint

> > > pains and fever and

> > > exhaustion of Sjogrens, why shouldn't some doctor

> > > have tried to give it for

> > > CFS as well. I told her I would ask on this list

> > > because here in Israel most

> > > doctors treating CFS are very very conservative in

> > > their treatments.

> > > Experimental treatment is almost unknown. So please

> > > give us some input here,

> > > maybe she has come up with something... who knows...

> > > Thanks.

> > > Judy B.

> >

> >

> > __________________________________________________

> >

[Guest guest]

thanks Jennie, I will pass this on to my friend.

Judy B.

Re: Plaquenil

> Hi Judy -

>

> I have not yet tried Plaquenil. However, when I

> tested positive for lupus last year I went to a

> rheumatologist who suggested it for my joint pain. I

> also have the dryness symptoms you mentioned. My

> doctor says it is very safe and works very well for

> these symptoms. If my pain continues as it has lately

> (pretty severe in my joints) I'm going to ask her for

> a trial run.

>

> That's all I know for now - Jennie

>

> --- judy <baumelj@...> wrote:

> > Dear Everyone,

> > I have a question. A friend of mine who has CFS but

> > some of the signs of

> > Sjogrens (the " dry " disease, an autoimmune disease)

> > but none of the blood

> > signs was given plaquenil, a disease modifying drop,

> > to try a help her

> > illness. Ostensibly it was for the possible

> > Sjogrens, but as she, like me,

> > suffers with lowgrade fever for a long time (for her

> > it's already over two

> > years plus) and she also has the exhaustion and

> > joint pains, she wanted to

> > know if any of you were given this medication for

> > CFS. She figures that if

> > it is given for the dry eyes, dry lips and joint

> > pains and fever and

> > exhaustion of Sjogrens, why shouldn't some doctor

> > have tried to give it for

> > CFS as well. I told her I would ask on this list

> > because here in Israel most

> > doctors treating CFS are very very conservative in

> > their treatments.

> > Experimental treatment is almost unknown. So please

> > give us some input here,

> > maybe she has come up with something... who knows...

> > Thanks.

> > Judy B.

>

>

> __________________________________________________

>

[Guest guest]

Hi Judith -

I take hydroxychloroquine sulfate, the generic for

plaquenil, 200 mg per day. By quinine, I think you are

referring to chloroquine, which is much more potent

but has more dangerous side effects such as damage to

the eyes. The Lupus Book discusses these drugs as

well as the older drug Quinacrine, which is used

mainly for profound fatigue according to this author.

He recommends using Plaquenil if it can be tolerated.

I have had no side effects so far. In the US it is

available by prescription only.

Does anyone else on the list have experience with any

of these drugs? All the lupies I know take plaquenil

only.

That's all I know - hope it helps. Best, Jennie

Message: 6

Date: Wed, 7 Mar 2001 06:02:21 -0500

From: Judith F Wisdom <judithwisdom@...>

Subject: Re: Re: Doing well on Plaquenil

Now I'm interested! My father was beset by a lot of

chronic illnesses

when I was a kid. I didn't pay much attention but

heard him refer to

them as fevers. He took quinine for it and it helped

he reported.

He never travelled out of the country but I've always

wondered about

that

and what I " have. " How does Plaquenil differ from

quinine? And is it

available by script or not? And has anyone seen

anything written on it

re our illness?

Thanks.

Judith

__________________________________________________

[Guest guest]

I have taken both chloroquine and quinine, and have a somewhat

different idea of them. Quinine has RATHER more side effects than

cloroquine. Chloroquine is taken in the developing world by probably

millions of people as a profilaxis sp? for malaria. I personally know

many people doing this. Many people take it weekly for years,

generally without side effects. I have taken it for this reason, but

it had no noticable effect on my CFS symptoms. It is also probably

the most used (overused) drug for treatment of malaria, so much so

that in many places the malaria no longer responds to chloroquine.

Quinine is a very old drug for malaria, but in many places is still

the best and is held in reserve as a last resort for very serious

cerebral cases. It is very unpleasant to take, the major symtom being

ringing of the ears and a general sick feeling. I have had it twice

for serious malaria cases.

Matt

> Hi Judith -

> I take hydroxychloroquine sulfate, the generic for

> plaquenil, 200 mg per day. By quinine, I think you are

> referring to chloroquine, which is much more potent

> but has more dangerous side effects such as damage to

> the eyes. The Lupus Book discusses these drugs as

> well as the older drug Quinacrine, which is used

> mainly for profound fatigue according to this author.

> He recommends using Plaquenil if it can be tolerated.

> I have had no side effects so far. In the US it is

> available by prescription only.

>

> Does anyone else on the list have experience with any

> of these drugs? All the lupies I know take plaquenil

> only.

>

> That's all I know - hope it helps. Best, Jennie

>

> Message: 6

> Date: Wed, 7 Mar 2001 06:02:21 -0500

> From: Judith F Wisdom <judithwisdom@j...>

> Subject: Re: Re: Doing well on Plaquenil

>

> Now I'm interested! My father was beset by a lot of

> chronic illnesses

> when I was a kid. I didn't pay much attention but

> heard him refer to

> them as fevers. He took quinine for it and it helped

> he reported.

>

> He never travelled out of the country but I've always

> wondered about

> that

> and what I " have. " How does Plaquenil differ from

> quinine? And is it

> available by script or not? And has anyone seen

> anything written on it

> re our illness?

>

> Thanks.

>

> Judith

>

> __________________________________________________

>

[Guest guest]

Hi, Judith,

>Plaquenil

>Now I'm interested! My father was beset by a lot of chronic illnesses

>when I was a kid. I didn't pay much attention but heard him refer to

>them as fevers. He took quinine for it and it helped he reported.

>

>He never travelled out of the country but I've always wondered about that

>and what I " have. " How does Plaquenil differ from quinine? And is it

>available by script or not? And has anyone seen anything written on it

>re our illness?

Plaquenil is hydroxyquinoline, which is a close chemical relative of

quinine. It was originally approved as an antimalarial (still its major use)

and works on the malaria parasites the same way as quinine.

I haven't seen anything on Plaquenil's use for CFS. I do know that it is the

first choice of rheumatologists for treating lupus (an autoimmune disease)

now instead of steroids, because of the much lower rate and severity of side

effects.

From the information you gave, I can see two different (opposite)

possibilities.

1) Your father had an autoimmune condition, which you have inherited (maybe

not directly - could be multigenic, have environmental triggers, etc.) Your

father found that quinine helped him, but that was due to its effects on the

immune system and not due to antimalarial action. In this case, your CFS may

have an important autoimmune component - and Plaquenil would likely help.

2) Your father got malaria - it can be spread from an immigrant who has it,

via mosquitos that are present in the US). He was treated with

antimalarials. In this case, Plaquenil would not help you (unless you have

an undiagnosed or subclinical malarial infection, possibly passed from your

father..)

Some additional information about your father's history might possibly help.

Did he grow up in the south? Did he live in an area where thre were a lot of

immigrants from Africa or southern Asia? (Both of these would make malaria

more likely.) Are there others in your family that have similar illnesses?

(That would point to hereditary autoimmune problems.)

Either way, if your symptoms are bad enough Plaquenil might be worth a try.

The side effects are usually slight, so risk is fairly low.

Jerry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Jerry,

To my knowledge my father was not likely to have been exposed by the

geographical factors or exposure to folks from the countries you

mentioned, though I can't be sure.

However, I raised this issue because I thought that some people on this

list who don't have lupus have been using this, and I assumed the reason

was that something of one of the various theories re ME/CFS connected to

the way P might act on the body.

If it's used in lupus instead of steroids and thus is thought to or

assumed to or proven to have an impact on autoimmunity doesn't there

still remain the possibility that our immune problems have some overlap

with autoimmune processes?

I lived in the South for five years, but. . . .

I think there are too many factors here for me to (with my level of

knowledge) figure out. The missing link is for me to know if anyone

doesn't have lupus, has the dx FM, ME, or CFS and has done well on

Plaquenil. And what made the doc who prescribed it do so.

Thanks.

Judith

On Sat, 10 Mar 2001 21:18:35 -0500 " Jerry "

<jerrycam@...> writes:

> Hi, Judith,

>

> >Plaquenil

> >Now I'm interested! My father was beset by a lot of chronic

> illnesses

> >when I was a kid. I didn't pay much attention but heard him refer

> to

> >them as fevers. He took quinine for it and it helped he reported.

> >

> >He never travelled out of the country but I've always wondered

> about that

> >and what I " have. " How does Plaquenil differ from quinine? And is

> it

> >available by script or not? And has anyone seen anything written

> on it

> >re our illness?

>

> Plaquenil is hydroxyquinoline, which is a close chemical relative of

>

> quinine. It was originally approved as an antimalarial (still its

> major use)

> and works on the malaria parasites the same way as quinine.

>

> I haven't seen anything on Plaquenil's use for CFS. I do know that

> it is the

> first choice of rheumatologists for treating lupus (an autoimmune

> disease)

> now instead of steroids, because of the much lower rate and severity

> of side

> effects.

>

> From the information you gave, I can see two different (opposite)

> possibilities.

>

> 1) Your father had an autoimmune condition, which you have inherited

> (maybe

> not directly - could be multigenic, have environmental triggers,

> etc.) Your

> father found that quinine helped him, but that was due to its

> effects on the

> immune system and not due to antimalarial action. In this case, your

> CFS may

> have an important autoimmune component - and Plaquenil would likely

> help.

>

> 2) Your father got malaria - it can be spread from an immigrant who

> has it,

> via mosquitos that are present in the US). He was treated with

> antimalarials. In this case, Plaquenil would not help you (unless

> you have

> an undiagnosed or subclinical malarial infection, possibly passed

> from your

> father..)

>

> Some additional information about your father's history might

> possibly help.

> Did he grow up in the south? Did he live in an area where thre were

> a lot of

> immigrants from Africa or southern Asia? (Both of these would make

> malaria

> more likely.) Are there others in your family that have similar

> illnesses?

> (That would point to hereditary autoimmune problems.)

>

> Either way, if your symptoms are bad enough Plaquenil might be worth

> a try.

> The side effects are usually slight, so risk is fairly low.

>

> Jerry

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

Judith -

I have not been formally diagnosed with Lupus. I did

have two positive ANA tests, but all the other lupus

screeners were negative. My formal diagnosis, the one

that I'm on SSDI for, is CFS/FM. I have been taking

plaquenil for about two months now with no side

effects. My pain level and other weird symptoms

(burning hands/feet, extreme sensitivity to cold) are

better but my energy level is not. My doctor agreed

to try me on this drug because she has seen it work

with some of her patients with FM, and since it is

fairly benign we agreed it was worth a trial.

Hope this helps - Jennie

Message: 12

Date: Wed, 14 Mar 2001 14:46:07 -0500

From: Judith F Wisdom <judithwisdom@...>

Subject: Re: Re: Plaquenil

(snip)

I think there are too many factors here for me to

(with my level of

knowledge) figure out. The missing link is for me to

know if anyone

doesn't have lupus, has the dx FM, ME, or CFS and has

done well on

Plaquenil. And what made the doc who prescribed it do

so.

Thanks.

Judith

__________________________________________________

[Guest guest]

I had to look it up myself. Sounds like it is one not

to be " taken " lightly. Here is a page with

description:

http://www.nlm.nih.gov/medlineplus/druginfo/hydroxychloroquinesystemic202288.htm\

l

C-MI

--- rja86@... wrote:

> Plaquenil; does anyone know what medication that

> is? I've never heard

> of it. ) Thanks

>

__________________________________________________

[Guest guest]

Great link , Thanks. My best friends mother has some serious eye problems as a result of using plaquenil. You're right, it shouldn't be "taken" lightly. For that matter, I believe that most medications should be used only when there is no other alternative. Tammy

Re: Plaquenil

I had to look it up myself. Sounds like it is one notto be "taken" lightly. Here is a page withdescription:http://www.nlm.nih.gov/medlineplus/druginfo/hydroxychloroquinesystemic202288.html C-MI--- rja86@... wrote:> Plaquenil; does anyone know what medication that> is? I've never heard> of it. ) Thanks> __________________________________________________

[Guest guest]

C,

Thank you for looking that up. It seems way to dangerous for me to

take. I wonder how it helps IC, unless it's just for arthritis relief.

Happy Holidays!!

Happy Holidays!!!

Love,

Reneé and Jerry

[Guest guest]

I guess some of you freaked out over the possible side effects of

Plaquenil huh? Just wanted to explain a couple things about it and

it's use. It's used to treat autoimmune diseases, not just rheumatoid

arthritis. I have Hashimoto's thyroiditis, which is also an

autoimmune disease and I have all the same symptoms as being

hypothyroid. Yes you have to have a retina check every six months but

the Opthamalogist explained to me that it's because Plaquenil is a

derivative of a drug they used to treat people with that had malaria

and because that drug did have the possibility to cause retina damage,

they recommend the retina check. The other side effects aren't any

different then other meds used to treat arthritis, or even over the

counter cold remedy, allergy meds, etc. I decided to take my doctor's

advise and start the Plaquenil because I was sick and tired of being

sick and tired all the time. I was to the point that I'd give

anything a try if it would just help me feel better, and it has, and I

am so thankful for that! I was hypo many years ago, it went into

remission, and then came back full force, the traditional thyroid meds

didn't help me then either, so I felt I had nothing to lose and

everything to gain by trying this. I just wanted to share what was

working for me, but like I said, I have Hashimoto's and if you read

about this disease, you will see that it's pretty much the same as

being hypo.

Hope everybody had a wonderful Thanksgiving,

Debbie

> C,

> Thank you for looking that up. It seems way to dangerous for me to

> take. I wonder how it helps IC, unless it's just for arthritis

relief.

> Happy Holidays!!

>

>

>

> Happy Holidays!!!

>

> Love,

> Reneé and Jerry

[Guest guest]

Tammy,

Can you please explain what exactly the " serious eye problems " are

that your best friends mother got as a result of Plaquenil? If it's

the blurred vision, yes I too had a slight problem with it in the

beginning and it explains this side effect in the product information

insert you get when you fill the script. In my case, it did go away

within the first week of treatment like explained. If there she had

other problems besides the blurred vision, I'd really appreciate

hearing exactly what they are.

Thanks,

Debbie

> > Plaquenil; does anyone know what medication that

> > is? I've never heard

> > of it. ) Thanks

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Debbie,

My friends mom had retinal damage where patches of her vision is black and she has "floaters" in her vision. The damage is permanent. She had been on the drug for two years without any other problems. Although the side effect is relatively rare if it does occur it's serious because your vision is so precious. If you are on the drug make sure you have frequent eye checks and if you ever notice what appears to be black spots in your vision get a check up right away. The thing is I think it's pretty difficult to notice the problem in early stages because they start as small tears in your retina and aren't easy to notice in your vision at first.

Tammy

Re: Plaquenil

Tammy,Can you please explain what exactly the "serious eye problems" are that your best friends mother got as a result of Plaquenil? If it's the blurred vision, yes I too had a slight problem with it in the beginning and it explains this side effect in the product information insert you get when you fill the script. In my case, it did go away within the first week of treatment like explained. If there she had other problems besides the blurred vision, I'd really appreciate hearing exactly what they are.Thanks,Debbie> > Plaquenil; does anyone know what medication that> > is? I've never heard> > of it. ) Thanks> > > > > __________________________________________________>

[Guest guest]

Tammy,

Thank you for responding and providing this information. My Optha doc had a

long discussion with me about the Plaquenil and the risks. He told me that

as long as I keep up the appointments, which I will, if there is any change

with my next appt in six months, that discontinuation of the Plaquenil right

then, can help reverse the change. He also told me that in his 30+ years of

practice he's never seen any Plaquenil patients have a retina problem. But

I know and understand that it can happen and will continue to have the

retina checks done every six months as prescribed.

Debbie

>From: " Tammy Fuller " <tfuller@...>

>Reply-hypothyroidism

><hypothyroidism >

>Subject: Re: Re: Plaquenil

>Date: Fri, 23 Nov 2001 08:28:38 -0500

>

>Hi Debbie,

>My friends mom had retinal damage where patches of her vision is black and

>she has " floaters " in her vision. The damage is permanent. She had been on

>the drug for two years without any other problems. Although the side effect

>is relatively rare if it does occur it's serious because your vision is so

>precious. If you are on the drug make sure you have frequent eye checks and

>if you ever notice what appears to be black spots in your vision get a

>check up right away. The thing is I think it's pretty difficult to notice

>the problem in early stages because they start as small tears in your

>retina and aren't easy to notice in your vision at first.

>Tammy

> Re: Plaquenil

>

>

> Tammy,

> Can you please explain what exactly the " serious eye problems " are

> that your best friends mother got as a result of Plaquenil? If it's

> the blurred vision, yes I too had a slight problem with it in the

> beginning and it explains this side effect in the product information

> insert you get when you fill the script. In my case, it did go away

> within the first week of treatment like explained. If there she had

> other problems besides the blurred vision, I'd really appreciate

> hearing exactly what they are.

> Thanks,

> Debbie

>

>

> > > Plaquenil; does anyone know what medication that

> > > is? I've never heard

> > > of it. ) Thanks

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Plaquenil is a funny drug. I thought it wasn't helping me much, and

that the Enbrel and Mobic were enough. So last summer my rheumy told

me I could stop taking it. Well, a few weeks later I started going

into a flare, and the rheumy said she thought that might happen,

because the plaquenil was now out of my system. Needless to say, I

still take it. So even though you may think it isn't helping much, it

might be doing more than you think. Just my two cents :-)

Elisheva

>

> Dear Becki, n takes plaquenil, and I think it helps a bit.

We go to a

> new doctor next week, and I am wondering if it is time to move up

to mtx?

> My son will be five on July 24th. He was born 10 minutes before

midnight.

> I wanted him to have his own birthday. His Dad's birthday is July

25th.

> (n, 13 systemic)

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

[Guest guest]

Hi,

Last week, when Josh went in for measurements prior to getting his first injection of growth hormone, our pediatrician told me I should ask the rheumatologist about an updated long-term plan for Josh. For the first time ever, we're actually considering how we might go about decreasing or discontinuing some of the meds that he's been taking for years. First things first. We're finally close to the point of Josh being off of daily steroids. Today is the third day that he's taking just 2mgs of prednisone. (People here who have known me since I first went online in '96 will realize that this absolutely "boggles my mind." How long have I been talking about our prednisone issues?!? To me, this is absolutely incredible.) Well, if everything goes according to schedule, Josh will stay well on this current dose and in a couple months will probably be off it.

The next drug we'll deal with will be, according to the rheumatologist, Plaquinel. Josh took half a pill one day (100mg) and a full pill the next (200mgs) for over 4 years and then last year we switched to 200mgs everyday. Plaquinel will be the first drug we'll decrease and then discontinue. Like Elisheva, I never really put too much stock in it. Figured with heavy-hitters like MTX and prednisone, it probably wasn't doing too much but since didn't have any complaints about taking it, I didn't either. I guess we'll just have to cross that bridge when we finally get to it.

Aloha,

Georgina

----- Original Message -----

From: elishevachaya

Plaquenil is a funny drug. I thought it wasn't helping me much, and that the Enbrel and Mobic were enough. So last summer my rheumy told me I could stop taking it. Well, a few weeks later I started going into a flare, and the rheumy said she thought that might happen, because the plaquenil was now out of my system. Needless to say, I still take it. So even though you may think it isn't helping much, it might be doing more than you think. Just my two cents :-)Elisheva> > Dear Becki, n takes plaquenil, and I think it helps a bit. We go to a > new doctor next week, and I am wondering if it is time to move up to mtx? > My son will be five on July 24th. He was born 10 minutes before midnight. > I wanted him to have his own birthday. His Dad's birthday is July 25th. > (n, 13 systemic)

[Guest guest]

Hiya Georgina and Josh..great hear everything is going so well for yall!

Keep up the good work Josh..yall are in our thoughts!

karen(tab17..poly)

From: " Georgina " <gmckin@...>

Reply-

< >

Subject: Re: Re: plaquenil

Date: Fri, 26 Apr 2002 12:06:01 -1000

Hi,

Last week, when Josh went in for measurements prior to getting his first

injection of growth hormone, our pediatrician told me I should ask the

rheumatologist about an updated long-term plan for Josh. For the first time

ever, we're actually considering how we might go about decreasing or

discontinuing some of the meds that he's been taking for years. First things

first. We're finally close to the point of Josh being off of daily steroids.

Today is the third day that he's taking just 2mgs of prednisone. (People

here who have known me since I first went online in '96 will realize that

this absolutely " boggles my mind. " How long have I been talking about our

prednisone issues?!? To me, this is absolutely incredible.) Well, if

everything goes according to schedule, Josh will stay well on this current

dose and in a couple months will probably be off it.

The next drug we'll deal with will be, according to the rheumatologist,

Plaquinel. Josh took half a pill one day (100mg) and a full pill the next

(200mgs) for over 4 years and then last year we switched to 200mgs everyday.

Plaquinel will be the first drug we'll decrease and then discontinue. Like

Elisheva, I never really put too much stock in it. Figured with

heavy-hitters like MTX and prednisone, it probably wasn't doing too much but

since didn't have any complaints about taking it, I didn't either. I

guess we'll just have to cross that bridge when we finally get to it.

Aloha,

Georgina

----- Original Message -----

From: elishevachaya

Plaquenil is a funny drug. I thought it wasn't helping me much, and

that the Enbrel and Mobic were enough. So last summer my rheumy told

me I could stop taking it. Well, a few weeks later I started going

into a flare, and the rheumy said she thought that might happen,

because the plaquenil was now out of my system. Needless to say, I

still take it. So even though you may think it isn't helping much, it

might be doing more than you think. Just my two cents :-)

Elisheva

>

> Dear Becki, n takes plaquenil, and I think it helps a bit.

We go to a

> new doctor next week, and I am wondering if it is time to move up

to mtx?

> My son will be five on July 24th. He was born 10 minutes before

midnight.

> I wanted him to have his own birthday. His Dad's birthday is July

25th.

> (n, 13 systemic)

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Wow! Josh off prednisone! What a wonderful thought. I sure hope it happens soon. To even be considering it for Josh is wonderful. I remember when I first started here (over one year ago, unbelievably) and you had the prednisone issues. How great for Josh and an inspiration to us all. Michele

-----Original Message-----From: Georgina [mailto:gmckin@...] Sent: Friday, April 26, 2002 5:06 PM Subject: Re: Re: plaquenil

Hi,

Last week, when Josh went in for measurements prior to getting his first injection of growth hormone, our pediatrician told me I should ask the rheumatologist about an updated long-term plan for Josh. For the first time ever, we're actually considering how we might go about decreasing or discontinuing some of the meds that he's been taking for years. First things first. We're finally close to the point of Josh being off of daily steroids. Today is the third day that he's taking just 2mgs of prednisone. (People here who have known me since I first went online in '96 will realize that this absolutely "boggles my mind." How long have I been talking about our prednisone issues?!? To me, this is absolutely incredible.) Well, if everything goes according to schedule, Josh will stay well on this current dose and in a couple months will probably be off it.

The next drug we'll deal with will be, according to the rheumatologist, Plaquinel. Josh took half a pill one day (100mg) and a full pill the next (200mgs) for over 4 years and then last year we switched to 200mgs everyday. Plaquinel will be the first drug we'll decrease and then discontinue. Like Elisheva, I never really put too much stock in it. Figured with heavy-hitters like MTX and prednisone, it probably wasn't doing too much but since didn't have any complaints about taking it, I didn't either. I guess we'll just have to cross that bridge when we finally get to it.

Aloha,

Georgina

----- Original Message -----

From: elishevachaya

Plaquenil is a funny drug. I thought it wasn't helping me much, and that the Enbrel and Mobic were enough. So last summer my rheumy told me I could stop taking it. Well, a few weeks later I started going into a flare, and the rheumy said she thought that might happen, because the plaquenil was now out of my system. Needless to say, I still take it. So even though you may think it isn't helping much, it might be doing more than you think. Just my two cents :-)Elisheva> > Dear Becki, n takes plaquenil, and I think it helps a bit. We go to a > new doctor next week, and I am wondering if it is time to move up to mtx? > My son will be five on July 24th. He was born 10 minutes before midnight. > I wanted him to have his own birthday. His Dad's birthday is July 25th. > (n, 13 systemic)

[Guest guest]

Hi

I did a quick search and found the Arthritis Foundation has a booklet that they

will send free of charge on hydroxycholoroquine at 800-283-7800 booklet #

835-5650

philcome <philcome@...> wrote: My CFS doctor gave me an article on CFS

and how in some cases it is actually lymes. It mentions combining antibiotics

with hydroxychloroquine(plaquenil)which increses intracellular pH and

potentilates the effectiveness of antiobiotics. Has anyone tried this or know

anything about it?Or are there other ways to effect an intracellular pH increase

to lessen the acidity?

Phil

[Guest guest]

my wife takes plaquenil for lupus. taking this requires

periodic visits to the eye doctor because it may cause

serious eye/vision problems. Also period blood tests

are necessary to determine if other side effects are

occurring without the patients knowledge.

I have CFIDS, I dont take plaquenil and I'm grateful I

dont have to. It is effective with lupus symptoms but that

effectiveness is balanced with potential negative side

effects, like most medicines.

I would be interested if, after your doc. gave the article

to you, if he mentioned these side effects??

eml

-- Plaquenil

My CFS doctor gave me an article on CFS and how in some cases it is actually

lymes. It mentions combining antibiotics with

hydroxychloroquine(plaquenil)which increses intracellular pH and

potentilates the effectiveness of antiobiotics. Has anyone tried this or

know anything about it?Or are there other ways to effect an intracellular pH

increase to lessen the acidity?

Phil

[Guest guest]

I am wondering if your doctor gave you a Lymes test before suggesting a lymes

treatment.

Bbob

Plaquenil

My CFS doctor gave me an article on CFS and how in some cases it is actually

lymes. It mentions combining antibiotics with hydroxychloroquine(plaquenil)which

increses intracellular pH and potentilates the effectiveness of antiobiotics.

Has anyone tried this or know anything about it?Or are there other ways to

effect an intracellular pH increase to lessen the acidity?

Phil