Plaquenil

October 9, 2006

,

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.

>

October 9, 2006

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

>

February 19, 2007

Hello I take plaquenil.It does good for me I take 200mg 2 times a

day.Just make sure you go to your eye docs,app.I have been on mine for

15 years.

February 21, 2007

and Jane,

I was on Plaquenil for a short time and had the same flu symptoms. I

thought I was crazy! After I stopped taking the meds, the symptoms went away!

My

Rhummy has encouraged me to try it again, but at a slower rate this time. I

am very hesitant. On one level, it is somewhat comforting to know that I

wasn't crazy and even though the reactions seem to be unusual (I have also

heard

that this drug is well tolerated by most) others are also having reactions.

Thanks for sharing! Good luck with your decisions......

Fellows

Anchorage AK

Liebenhaus Rottweilers and Pugs

and a Clumber Spaniel, RN

www.Liebenhaus.com

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February 21, 2007

I understand the Plaquenil has pretty

> much no side effects and

> works well.

Hi- ,

I've been on Plaquenil since last June. I was terribly

ill, as if having non-stop flu, for the first two

weeks, but I persisted. After a couple of months, we

dropped the dosage back to just taking it in the

evening after dinner. When I take it in the morning,

I'm nauseas and achy all day. If I take it in the

evening I only have to have the " flu " then, instead of

all day long.

If I don't take it all, I ache and hurt and fatigue

gets unbearable. I'm not taking the full dosage, that

just makes me sick. However, since I've been taking

it, I've been able to get my jaw completely closed,

which has expanded my once limited diet, although I

still can't chew things like raw carrots, steak, etc.

(who needs those anyway

You need to have your eyes examined every six months

by an opthamalogist while on plaquenil as it can cause

changes in your vision. Good luck to you!

warm blessings,

jane

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Want to start your own business?

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February 21, 2007

Thank you so much for telling me the truth about your experience. This is

what I need. So far, by talking to people and reading, you are the worst as

far as side effects go. However, I really want to know what I am getting

into. Thanks

Ontario

Re: [ ] Plaquenil

>I understand the Plaquenil has pretty

>> much no side effects and

>> works well.

>

> Hi- ,

>

> I've been on Plaquenil since last June. I was terribly

> ill, as if having non-stop flu, for the first two

> weeks, but I persisted. After a couple of months, we

> dropped the dosage back to just taking it in the

> evening after dinner. When I take it in the morning,

> I'm nauseas and achy all day. If I take it in the

> evening I only have to have the " flu " then, instead of

> all day long.

>

> If I don't take it all, I ache and hurt and fatigue

> gets unbearable. I'm not taking the full dosage, that

> just makes me sick. However, since I've been taking

> it, I've been able to get my jaw completely closed,

> which has expanded my once limited diet, although I

> still can't chew things like raw carrots, steak, etc.

> (who needs those anyway

>

> You need to have your eyes examined every six months

> by an opthamalogist while on plaquenil as it can cause

> changes in your vision. Good luck to you!

>

> warm blessings,

> jane

April 5, 2010

Can plaquenil cause eye problems?

From: rheumatic [mailto:rheumatic ] On Behalf

Of Joyce s

Sent: Monday, April 05, 2010 4:21 PM

rheumatic

Subject: rheumatic plaquenil

I was on plaq.200mg daily for about 4 years and had no eye issues at

all..keep your yearly appt and make sure hs/she is knowledgable with the

drugs. My son lost an eye to disease so I'm extra cautious...joyce dm, iowa

April 5, 2010

there is a slight risk to your retina.joyce

________________________________

From: Mazik <smazik@...>

rheumatic

Sent: Mon, April 5, 2010 3:33:49 PM

Subject: RE: rheumatic plaquenil

Can plaquenil cause eye problems?

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of Joyce s

Sent: Monday, April 05, 2010 4:21 PM

rheumatic@grou ps.com

Subject: rheumatic plaquenil

I was on plaq.200mg daily for about 4 years and had no eye issues at

all..keep your yearly appt and make sure hs/she is knowledgable with the

drugs. My son lost an eye to disease so I'm extra cautious...joyce dm, iowa

May 18, 2010

My son had a similar experience on tindamax...Our LLMD had him hold off a couple

doses and they do other dosing schedules too like only on the w/ends so they

don't miss school and stuff...I would hold off and wait to talk w/ Dr., you know

your son best.But I am NOT a doctor... this is just my motherly instinct talking

:)Good Luck. I am sorry. I know how it feels when they are SO sick and you can't

do anything to help them

From: emcraven23 <emcraven23@...>

Subject: [ ] Plaquenil

Date: Monday, May 17, 2010, 9:03 AM

Â

My son (age 8) just started taking this on Tuesday, I was just wondering

if anyone else's children had any really bad side effects from this. We just

changed from Doxci to Zmax and the Plaquenil because the Doxci wasn't helping

him anymore. He had been on Doxci for about 4-5 months and it had been the ONLY

meds that had helped him then it stopped and he started going backwards again.

He was on just Zmax in the beginning and it didn't help everything he has.

Late Friday he said his throat hurt and Sat he actually had a really good day!!

But Sat night he got a really bad sore throat and was up during the night then

sunday it got really bad and he is having fever type chills but not running a

fever.

In the info from the pharmacy it said some side effects can be infection type

symptons ie fever, persistent sore throat. He is having trouble sleeping and is

just a mess. Honestly Sunday is one of the worst days he has ever had he was

doing so bad with everything.

I was just wondering if anyone else had any experiences with this medicine. My

Dr is out of the office till Thursday so I'm kind of at a lost on what to do!

I'm really concerned for him. And now I'm worrying about giving it to him again

or not giving it to him and he not getting his meds for him to go into a

relapse.

May 18, 2010

My daughter took the same combination of Zmax & Plaquenil for almost four years.

It was explained to us that the Plaquenil was used to help the antibiotic break

through the cell walls to destroy the Lyme bacteria. She is now completely off

all meds since January 2009.

There were periods when we thought we were taking three steps back. But then we

took four steps forward. Unfortunately, it is Lyme.

Try giving him one of those cleansing baths with hydrogen peroxide, Epson salts

& I believe...baking soda. I would have to look in my notes for the exact

measurements and ingredients since it has been sometime.

May 19, 2010

I would be interested in the measurements for the cleansing baths.

I have been taking plaquenil for a year but my doctor does not give it to

children so my daughter takes flagyl only on the weekends. It seems like every

Monday she feels miserable but bounces back by Tuesday.

>

> My daughter took the same combination of Zmax & Plaquenil for almost four

years. It was explained to us that the Plaquenil was used to help the antibiotic

break through the cell walls to destroy the Lyme bacteria. She is now

completely off all meds since January 2009.

>

> There were periods when we thought we were taking three steps back. But then

we took four steps forward. Unfortunately, it is Lyme.

>

> Try giving him one of those cleansing baths with hydrogen peroxide, Epson

salts & I believe...baking soda. I would have to look in my notes for the

exact measurements and ingredients since it has been sometime.

>

May 19, 2010

I know of taking baths w/ 1 cup of e salts to a full tub of waterand we also do

1 quart of apple cider vinegar to a full tub of h2oÂ both are for detoxing

good luck

From: throughgrace97 <TriciaSod@...>

Subject: Re: [ ] Plaquenil

Date: Tuesday, May 18, 2010, 7:35 PM

Â

I would be interested in the measurements for the cleansing baths.

I have been taking plaquenil for a year but my doctor does not give it to

children so my daughter takes flagyl only on the weekends. It seems like every

Monday she feels miserable but bounces back by Tuesday.

>

> My daughter took the same combination of Zmax & Plaquenil for almost four

years. It was explained to us that the Plaquenil was used to help the antibiotic

break through the cell walls to destroy the Lyme bacteria. She is now

completely off all meds since January 2009.

>

> There were periods when we thought we were taking three steps back. But then

we took four steps forward. Unfortunately, it is Lyme.

>

> Try giving him one of those cleansing baths with hydrogen peroxide, Epson

salts & I believe...baking soda. I would have to look in my notes for the

exact measurements and ingredients since it has been sometime.

>

October 24, 2010

Hello Ros,

I stopped taking the Plaquenil day before yesterday. I already feel some

relief in my right foot. I still have the numbness in both and my legs but

the stabbing pain on the top of my right foot which I thought was neuropathy

(still might be) has lessened substantially. I can walk with less pain.

My Rhumy added the placquenil a month ago to the Enbrel to " increase the

effectiveness. " Like you, I think I am one of those very rare cases where

it causes more damage regarding peripheral neuropathy when those two are

combined. The relief I am experiencing just by stopping the plaquenil is

proof enough that it isn't for me. I don't care what my Rhumy says. By the

way....she totally " poo poo's AP and LDN.

My natropath Dr, Ahner is very good with many years of experience, so I will

follow his lead here. The plan is to ween of the Enbrel when i have been on

Minocin and LND longer.

Thank you so much for your note and confirming my suspicions on the

combination of the two. For me it was disaster.

Lindsey

On Sat, Oct 23, 2010 at 9:04 PM, lind Gittings <rosalig@...>wrote:

>

> Hi Lindsey

>

> I was on plaquenil for about four years and it worked wonderfully

> with the minocycline, but then I became allergic to the plaquenil and

> got dermatitis which is also a very rare reaction (only one example

> in the world of it on the internet!). If I were in your position I'd

> gradually taper off the Enbrel as the minocycline started to work.

> Minocycline and plaquenil seem to be synergistic, to enhance the

> effectiveness of each other. But I would definitely be afraid of

> using Enbrel and plaquenil together because of the peripheral

> neuropathy and the problems you've already had. It might be a

> possibility to start the plaquenil if you taper off the Enbrel,

> though I guess you would have some pain while you were making the

> transition. I just wanted to say how well it worked for me and I know

> it has for quite a number of other people on this list who have RA,

> and they haven't had any troubles at all with it.

>

> Ros

>

January 2, 2011

Hello Group!

My name is and I just joined the group. The dr's think I might have a

combo of dermatomyositis and lupus but wont 100% diagnose me with either. This

has been ongoing for over a year. I do not have any joint/muscle pain. Just

rashes on my eyes, hands, and elbows and a very high positive ANA (1/2160).

Everything else comes up negative. My rhuemy has been trying to get me on

Plaquenil for a year - saying that my rashes would go away. I'm too scared of

the risks involved and don't feel as though the rashes are worth the risk at

this point.

Was hoping to get some advise or talk to anyone who has DM or has taken

Plaquenil and what your expierence is with it.

Thanks!

January 3, 2011

Welcome ,

The website www.rheumatic.org provides information on using low dose

antibiotics for inflammatory rheumatic diseases such as yours, and, because

the journey back to wellness is often long and difficult, this support group

was formed over 14 years ago to offer support and encouragement to people

using the protocol. I would suggest you read " The New Arthritis

Breakthrough " by Henry Scammell - available at www.amazon.com for $15.61.

Check out the comments Amazon has published about people using the therapy.

Another book would be " Rheumatoid Arthritis, The Infectious Connection " by

K. Poehlmann, Ph.D also available at www.amazon.com for $10.17.

Here is the FAQ outlining the protocol for using antibiotics

http://www.rheumatic.org/faq.htm

and here are a few of the many stories available on the web of people with

dermatomyositis who have used the protocol successfully. Some of them have

included their email address so you can contact them with your questions.

http://www.rheumatic.org/eva.htm

http://www.rheumatic.org/lisa2.htm

http://www.rheumatic.org/karen.htm

http://www.rheumatic.org/connie.htm

http://www.rheumatic.org/lee.htm

I had rheumatoid arthritis AND polymyositis. My story is at

www.rheumatic.org/ethel.htm

I'm sure you will hear from others in this group of over 2200 people

encouraging you to try the antibiotic protocol.

Ethel

rheumatic Plaquenil

> Hello Group!

> My name is and I just joined the group. The dr's think I might

> have a combo of dermatomyositis and lupus but wont 100% diagnose me with

> either. This has been ongoing for over a year. I do not have any

> joint/muscle pain. Just rashes on my eyes, hands, and elbows and a very

> high positive ANA (1/2160). Everything else comes up negative. My rhuemy

> has been trying to get me on Plaquenil for a year - saying that my rashes

> would go away. I'm too scared of the risks involved and don't feel as

> though the rashes are worth the risk at this point.

>

> Was hoping to get some advise or talk to anyone who has DM or has taken

> Plaquenil and what your expierence is with it.

>

> Thanks!

>

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

>

> To unsubscribe, email: rheumatic-unsubscribe@...! Groups

> Links

>

January 3, 2011

Plaquenil is the mildest of the rheumatic drugs. I was on it for 6 mos

and never had any problems though it didn't help so I stopped it. I

know some lyme docs are using Plaquenil as well as abx because it is

anti-bacterial. it was originally used for malaria I believe. I've met

people on plaquenil for years with no problems.

January 3, 2011

Welcome, !

I had dermatomyositis for about ten years. It was undiagnosed most of that

time. Once I found out about the antibiotic protocol, I was able to make a

full recovery. This group is a great resource for support along the way,

should you decide to go that route.

On Mon, Jan 3, 2011 at 1:44 AM, webvanessa80 <webvanessa@...> wrote:

>

> Hello Group!

> My name is and I just joined the group. The dr's think I might have

> a combo of dermatomyositis and lupus but wont 100% diagnose me with either.

> This has been ongoing for over a year. I do not have any joint/muscle pain.

> Just rashes on my eyes, hands, and elbows and a very high positive ANA

> (1/2160). Everything else comes up negative. My rhuemy has been trying to

> get me on Plaquenil for a year - saying that my rashes would go away. I'm

> too scared of the risks involved and don't feel as though the rashes are

> worth the risk at this point.

>

> Was hoping to get some advise or talk to anyone who has DM or has taken

> Plaquenil and what your expierence is with it.

>

> Thanks!

>

January 4, 2011

Ethel, thank you very much for your story. After joining the www.rbfbb.org I am

on Minocyline protocol for the past two years. I also LDN and some supplements

and I am currently in remission from RA. I took MTX and a bunch of other meds

previously and nothing except Mino.

I would recommend everyone try them since there is a lot of new research in

universities around US which are now supporting Dr Browns infectious theory.

Please google or go to www.rbfbb.org for more info on it.

From: Ethel Snooks <emsnooks@...>

Subject: Re: rheumatic Plaquenil

rheumatic

Date: Monday, January 3, 2011, 7:07 AM