Plaquenil?

[Guest guest]

, I have been on plaquenil for over one year now and my liver doctor

was not the happiest, but she finally realized that if I was going to be able

to move, that I had to have something to help. Just keep an eye on your labs.

The biggest fear is vision problems and you will want to have the eye doctor

check your eyes every 6 months.

Debby

[ ]

plaquenil?

Hey all,

My rheumy just gave me

plaquenil for Connective tissue disease,

reading online I've seen dont take if you have

liver disease, I know

I've heard some of you mention it before. Do

I need to let my

hepatologist know I am taking this? I'm not

scheduled to see him for

a few months. What has been some of your

experiences with the med?

The side effects look kind of bad, but better that

pred.!

Thanks!

Traci

[Guest guest]

Traci,

I always check with Hepatologist before taking any new meds. I think you should call. He will probably say OK but I would always clear new meds with him first.

Hope you feel better soon.

[Guest guest]

Traci,

I've been on plaquenil since 1996 for lupus. It has changed my life. It helped greatly with the fatigue, joint pain, and rashes that go along with lupus. My current rheumy says they have now found that plaquenil can slow or stop the organ damage that so often goes with lupus. My sister has been on plaquenil for several months. She has sjogren's syndrome and ankylosing spondylitis. It has helped decrease her joint pain a great deal.

I was diagnosed with AIH in Jan 03. Stopping the plaquenil has never even been mentioned. My rheumy did decrease it to one a day for a while because I was on both prednisone and imuran and she said that they would help with some of the same things the plaquenil helped with. She told me that the plaquenil was not going to cause any problems with my liver but that decreasing it temporarily just to cut down a little on the amount of meds I take wouldn't hurt anything. I did go back up to two plaquenil daily a couple of months ago because when they got my prednisone down to 2.5 mg daily, my joint pain began coming back.

In my opinion, plaquenil is a miracle drug. I have not had any side effects from taking it. You are supposed to have your eyes checked every six months while taking because there is a VERY slight risk of retinal damage. However, as long as you see an eye doctor every six months, you don't really need to worry about that. My eye doctor says the damage is very, very slow in progressing and at the first sign of any damage, the plaquenil is stopped and then it never progresses further.

Now, having said all that. I am not a doctor and I think anyone with liver disease should check with the hepatologist before beginning any new med. I would think a call to his office would be sufficient and there would be no need to actually see him just to find out if it is okay for you to start a new med.

take care,

[Guest guest]

Hi ,

We have so much in common. I too have Lupus and AIH. I was on

Medrol for the Lupus but it was not good for the diabetes. I started

taking the Plaquenil again because I was taken off the Medrol. I

used to take Plaquenil and it did help me with pains and fatigue. It

is a good drug, just have to get eyes checked a lot. Wishing you

good health. Write me anytime.

Rose

[Guest guest]

Rose,

I was one of the lucky ones. I was only on steriods rarely for lupus. I'd get a few cortisone injections a year in specific joints or in the butt when my back would knot up. I also usually had to take a medrol dose pack once or twice a year. Other than that, plaquenil is pretty much the only med I've been on for lupus. The first few years I also took an anti-inflammatory such as relafen or vioxx, but I haven't really needed one for joint pain since around Nov 01 because the plaquenil pretty much keeps my joint pain under control. The day I was diagnosed with AIH (Jan 6, 03), I had an appt with my rheumy a couple of hours before the appt with my GI. My rheumy told me how glad she was that we had managed to keep me off of prednisone and control my lupus with just plaquenil. Two hours later, the GI told me the results of the liver biopsy I'd had several days earlier. The biopsy showed autoimmune hepatitis (although he simply called it autoimmune liver disease). When he told me the treatment was prednisone and imuran, I cracked up laughing. I told him my rheumy must have jinxed me by saying she was glad we'd been able to keep me off of prednisone. So much for that! However, I was one of the lucky ones. They started me on 20 mg prednisone daily and my liver responded well so they never had to up the dose. I'm down to only 2.5 mg of prednisone daily along with 100 mg of imuran. I hope I never have to go on a higher dose of prednisone again. It is a miracle drug, but I sure hate it. In addition to the lupus and AIH, I have chronic pancreatitis and diabetes. The prednisone made it almost impossible to control my blood sugar.

Hope all is well with you.

[Guest guest]

, n was on it for five years. You have to be checked by an

ophthalmologist every six months for eye complications. The eye problems

are reversible, you just have to go off of the drug. Plaquenil is probably

the weakest dmard, but it works for some. It worked for n for several

years, but then became ineffective. n had no side effects from it.

(n, 15, systemic)

plaquenil?

>

> Forgot to ask in my last posting. Anyone know anything about plaquenil?

They gave us a small brochure about it as a possible med for Krystal. A

couple of things I read make me hesitant about it are that it can build up

in the eyes which she has had repeated problems with the eyes. And that it

can take 2-6 months to build up in the body. If this med is used, is there

something to take in conjunction that would at least lessen the pain until

it builds up?

>

>

>

[Guest guest]

Hi ,

My daughter has been on Plaquenil 200mg daily since last March. She

started to have some real improvement after 2-3 months. She hasn't

had any side effects, other than sensitivity to sunlight and bruising.

We take her to get her eyes checked every 4 months and have never had

any problems there.

We were just using Plaquenil until this Novemeber when she flared

again. We added prednisone but when the taper was done the flare

returned. She has now started Methotrexate and is using it in

conjunction with the Plaquenil. She finished the pred taper this week

and hopefully this combo of dmards will work for us.

You mentioned about some frustration regarding not having a conclusive

diagnosis. We have gone thru the same thing. Aundrea's current

rheumy says that she has an obvious autoimmune disorder but doesn't

classify it. Oddly enough Aundrea's labs also point to jra. When I

asked about Aundrea's labs being out of the reference range she said

that this was typical for patients with autoimmune disease. lacking a

diagnosis can be challenging when meeting with school admin etc or

even just inquiring church members, family, friends etc.. Since

Aundreas physical problems and treatment is the same as one would

receive for systemic jra and since that was her original diagnosis, I

just continue to use it for the puposes of paperwork etc..

I hope that Krystal has some relief soon!

(Aundrea 9 systemic) -

- In , " Kelleka " <Kelleka@c...> wrote:

> Forgot to ask in my last posting. Anyone know anything about

plaquenil? They gave us a small brochure about it as a possible med

for Krystal. A couple of things I read make me hesitant about it are

that it can build up in the eyes which she has had repeated problems

with the eyes. And that it can take 2-6 months to build up in the

body. If this med is used, is there something to take in conjunction

that would at least lessen the pain until it builds up?

>

>

>

[Guest guest]

,

I'm sure there are already replies before me, but plaquenil is also

a first line DMARD that has had good results in some. About the

eyes, our ped. ophth. said that if someone is on high doses for 15-

20 years, there may be eye problems, but other than that, he's not

seen any. My son was on plaquenil added to his mtx. for about two

weeks. It was added to help with the already fading " systemic

rash " . After 2 weeks, he broke out in full head to toe rash and we

stopped plaquenil. It states in the literature that it can actually

cause rash as well as help rashes.... go figure. It's different for

everybody.

Then there's a doctor who spoke at the AJAO conference over the

summer that was totally against using plaquenil specifically for

systemic JRA kids. I don't want to start anything again here, but I

think it's all individual and up to each individual doctor. ,

mom to n on the list here, has been on plaquenil for like 5

years and I'm sure will chime in if they already haven't. They have

much more experience with it than I.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

I'm so sorry as I'm sure this information is already on here somewhere, but I

can't find it! I just started on LDN and am wondering if I have to discontinue

my plaquenil. I would prefer to stay on it for a little while, but not if it

will interfere with the LDN. Thanks all.

[Guest guest]

BEWARE of plaquenil - some of the listed side effects are occular veinous

occlusion and color blindness. My brother got bit by both. Needless to say he

no longer takes plaquenil. The good news is that it inspired him to look at

alternative treatments - he is doing very well on LDN!

>

> I'm so sorry as I'm sure this information is already on here somewhere, but I

can't find it! I just started on LDN and am wondering if I have to discontinue

my plaquenil. I would prefer to stay on it for a little while, but not if it

will interfere with the LDN. Thanks all.

>

[Guest guest]

First, we are not doctors. Second, I do not know what you are being treated for, so if I was a doctor I would be clueless. Third, every drug comes with side effects.

That being said, Plaquenil saved my life when I needed it.

So...bottom line....talk with your physician about stopping the drug. If you are suffering from a stealth pathogen (chronic infection..ie..Lyme disease), LDN is a great adjunct therapy, but your immune under the benefits of LDN, are no match against infections of this sort. LDN alone will not be the answer.

>> I'm so sorry as I'm sure this information is already on here somewhere, but I can't find it! I just started on LDN and am wondering if I have to discontinue my plaquenil. I would prefer to stay on it for a little while, but not if it will interfere with the LDN. Thanks all.>

[Guest guest]

I was on Plaquenil when I began LDN, and had to undergo some really awful eye exams, but didn’t experience any damage. I was on it for a few years. I was happy to stop using it a few months into the LDN. I did flare up, but with antibiotic therapy that issue has pretty much gone away. Be aware that you may experience some exacerbation as you wean off the Plaquenil. Don’t let that convince you to go back on, if you can possibly avoid it.

Judy

Re: Plaquenil?

Posted by: " STEVEN " even1@... even1

Thu Apr 29, 2010 10:43 pm (PDT)

BEWARE of plaquenil - some of the listed side effects are occular veinous occlusion and color blindness. My brother got bit by both. Needless to say he no longer takes plaquenil. The good news is that it inspired him to look at alternative treatments - he is doing very well on LDN!

>

> I'm so sorry as I'm sure this information is already on here somewhere, but I can't find it! I just started on LDN and am wondering if I have to discontinue my plaquenil. I would prefer to stay on it for a little while, but not if it will interfere with the LDN. Thanks all.

>