Plaquenil

[Guest guest]

Thanks Jo Lynne

[Guest guest]

, Like Priscilla, I took plaquenil for many years. In some of us,

especially those who have iritis attacts, have tried the plaquenil for

a few months and were surprised that it really did help. It is a good

idea (drs. suggestion) to start out with a low dose 200mg at bedtime

and after three months, to increase the dose to 400mg. Many doctors

feel there is some anti-inflammatory properties in the medicine. It

helped for quite a few years to put my iritis attacks at bay. Maybe

you could try again...and sleep through any funny feelings. I never

experienced bad side effects, slept like a baby...and worked during

the next day with no noticeable problems. Have a good spring/summer.

Connie (Granny) AS, Uveitis, IBD Glaucoma

[Guest guest]

Helen,

I took plaquenil for something pre-transplant. Do you have your

eyes checked at least twice a year. Very important!!!!

May I ask you if you have heard of neonatal Lupus? I was

tested and it said `100% chance that I have it.

Jo Lynne

Re: MANDY__ thank-you

Hi Mandy,

Did they fix the hole in your bowel??? I can't remember if you said so or not... (blame it on fibro fog )

I was put on plaquenil for my SLE (Lupus)to try and put me in remission, it amazingly helped with my fibro pain a lot! I was so bad I couldn't walk from one chair to another with out such severe pain that the tears would just fall down my face, I was even in a wheelchair as I became unable to walk long distances... But for some reason, the drug that I was given for one ailment started helping another, after being on it for about 3 months, I was able to move about more freely and I am again a human being! ) I haven't had to use my wheelchair in over 2 years... I still have pains everyday and some days are harder than others but its Nothing like I used to go through... The Dr. said they are finding out that plaquenil has been helping others with the pain of the fibro also.

Take care and write when your able too...

((( Caring Hugs )))

Helen

[Guest guest]

I'm Laurie, I am on Imuran, *plaquenil, and cholchicine for Behcets

Disease. The latest increase of dose of Imuran this past summer has

helped me alot.

I get my eyes checked about every 9 mos to one year at the military

hospital. They also do a 'visual field' test at every other visit to

check the retna?

Laurie H.

[Guest guest]

Hi ! My son took Plaquenil for a while for his psoriatic arthritis.

He did not experience any benefits from it personally. He was monitored closely

for vision problems which thankfully never happened. His doctor did warn that

it had its risks and that they were permanent if they did occur. Pretty scary.

He stopped the Plaquenil since it was not helping his AS. Hope this helps a

little. Good luck to you.

Sent from my Verizon Wireless BlackBerry

Plaquenil

Have any of you used Plaquenil? 

[Guest guest]

I have eye problems. Retinal scarring from ReA. I chose to take

cellcept instead and it's worked great in low doses.

(Sent from my mobile. Please excuse brevity.)

[Guest guest]

Hi :? I was on plaquenil for several years and it really straightened

out my iritis problems and was great for many of the other REA problems.? I do

have crohn's disease as well and couldn't stay on it due to the bowel problems.?

However, it put my iritis into remission and have not had a flare of it since

then.? I do not have any permanent eyesight loss, so can't attest to that

issue.? Hope you find something that works for you.? I'm on Remicade and it is a

Godsend!? I was nervous about the IV, but itis worth it.

I'll say some prayers for you.?

Kathy from WI

Plaquenil

Hi

Thank you for your email in April, sorry I did not get back to you sooner..

Just saw your email here on the Risg list and wanted to tell you about my

Plaquenil experiencies. My iritis was flaring pretty chronically from 1983 to

1997, back and forth between my good eye and my bad eye, and both at times.

Then in 1997 my Rheum doc put me on Plaquenil and my iritis seemed to stop these

last 12 years. I only stopped it last November because of my Crohn's disease.

If you want to give it a trial run, start on the low dose which I think is 200mg

then go to the 400mg if needed. Or break it in half and start at 100mg.

Anyway, ask your eye doc to give you a " Visual Field " test before, and then

retest you in 3 to 6 months. They were down to testing me once a year. It can

be a great med for the eyes, just watch it closely.

Thanks for your eye doc reference here. I am now seeing a Dr. Marcello and a

Dr. Au who is trying my severe dry eyes with Restasis. My vision is blurry at

times and I only see out of one eye because of my dense cataract. I would love

to get it removed but am so afraid of a flare of the iritis. For now the Crohns

issues are my main focus and my beloved Rheum doc is moving to Texas. I need to

find a good primary care doctor here in Tucson who has the patience to deal

with all my problems.

Sorry to hear your dad did not like his last days at RMS. My hubby is still

there and he has 5 more years to work. Thankfully the insurance is good for our

medical problems. My husband is seeing Dr Schindler for his detached retina

problems. The surgery was successful and now he is just waiting to get his full

vision back.

Hope you are able to make a good decision about the Plaquenil. It was Connie

here on the list who told me about it 12 years ago and I was thankful I gave it

a try. Connie could tell you more as she had to quit using it after awhile.

We all are different, so ask your eye doc to monitor you closely if you do take

it.

Good hearing from you.

God Bless

Priscilla

in Tucson

[Guest guest]

Re: plaquenil. A sister of a friend used plaquenil with Buhner's herbs for a

year and she says she is cured.

A rheumatologist put her on the plaquenil for sero-negative Rheumatoid arthritis

(her RA tests were negative, her Lyme WB test was positive but the

rheumatologist said she did not have Lyme because there is no Lyme in Kansas!).

So she kept taking the plaquenil for a year, but on her own also did the Buhner

protocol.

So the actions of plaquenil are interesting to me.

> >

> > Do you have lyme ?

>

> I have Borrelia (garinii) infection; tested negative for common coinfections.

>

> > Plaquenil is the best with fasigyn and flagyl ABX for borella as it is able

to

>

> > attack also the cyst form of  lyme desease bacteria. it give a major dye

off

> >and

> >

> > conscutive herxeimer reaction meanse agravation due to the death of the

> > bacterias and the toxines they free while dying.

>

> yes, that's the theory. But I'm not convinced, nobody really knows. Nobody has

> proven that a 'Lyme herx' is the result of massive die-off of Bb bacteria, and

> it should be relatively easy to prove that. Something is missing ...

>

> Regarding Flagyl: it damages DNA (including our own, probably), that's its

mode

> of action. I think in the case of Bb the result can be 'explosive' because it

> activates the prophage (bacteriophage) inside Borrelia, so you get kind of a

> chain reaction killing the Bb's. But again, just theory.

>

> Sam Donta thinks Plaquenil works by changing pH value in the cells, making

them

> more accessible for certain antibiotics. This makes it possible to kill

> intracellular forms of Bb. That sounds like a good explanation to me,

Plaquenil

> in itself is not a 'killer', it must work indirectly.

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