Is Plaquenil making me worse?

[Guest guest]

I am wondering why my eyes all of a sudden are so bad, the dryness out of

control. I cant stand it. I dont know why I went from bad to worse. Is it the

cold weather causing the dryness pain which is either constant burning or

feelings like there's rocks scraping my eyeballs all the time or both. Or is it

the Plaquenil? I am really confused because the painful dryness in other places

is no worse than the usual.

 

I am not sure what to do. I stopped the antibiotics becasue they didnt work and

began the plaq but i only been on that a week or two, not sure its enough to say

if its the problem. Not sure if I should give it more time or stop it and get

back on antibiotics but take more antibiotics as far as potency than before. Or

do the MMS only which I haven't yet tried. I also take so many supplements (that

I am not sure do anything, or anything good anyway)...so not sure if they can

make me worse or else conflict somehow with antibioitcs or MMS.

[Guest guest]

Vicki,

I had to have eye exams every 3 months on Plaquenil, I know with some of these

diseases dry eyes is a symptom, but the plaquenil might be making your

eyes worse. I would suggest seeing an eye dr.

From: Vicki <genuinelysweet2002@...>

Subject: Re: rheumatic Is Plaquenil making me worse?

rheumatic

Date: Tuesday, September 23, 2008, 1:01 AM

I am wondering why my eyes all of a sudden are so bad, the dryness out of

control. I cant stand it. I dont know why I went from bad to worse. Is it the

cold weather causing the dryness pain which is either constant burning or

feelings like there's rocks scraping my eyeballs all the time or both. Or is it

the Plaquenil? I am really confused because the painful dryness in other places

is no worse than the usual.

 

I am not sure what to do. I stopped the antibiotics becasue they didnt work and

began the plaq but i only been on that a week or two, not sure its enough to say

if its the problem. Not sure if I should give it more time or stop it and get

back on antibiotics but take more antibiotics as far as potency than before. Or

do the MMS only which I haven't yet tried. I also take so many supplements (that

I am not sure do anything, or anything good anyway)...so not sure if they can

make me worse or else conflict somehow with antibioitcs or MMS.

[Guest guest]

Hi Vicki

I think it would be good to see an eye doctor about your eye

problems. I've had dry eyes which sometimes get ulcerated, for thirty

years (when I first got RA) even when it went into remission and I

had never used plaquenil. Since I've come out of remission three

years ago my eyes have been even more red, sore and dry every day.

I'm often embarrassed about them and use eye drops several times a

day. I haven't noticed that the plaquenil has made them worse and it

definitely (after 3 months) has improved the RA along with the

minocycline. I remember someone else on this list whose husband was

an eye doctor, said the combination of plaq and mino works for her

and that her hubby hadn't ever seen a case of eye damage with

plaquenil. That encouraged me to try the plaquenil again. It takes

about 3-6 months to work. But better than methotrexate! I'm always

trying to minimize the number of drugs I'm on and even though I'm

unsure how effective the minocycline is I keep taking it because I

don't want to go back to how I was before I had it. I do think it has

an anti-inflammatory effect as well as killing the bacteria.

One big thing I've noticed that is quite difficult to avoid, is that

whenever I get very stressed, even stressed about the illness, I get

worse. And it's so easy to panic and feel overwhelmed and incredibly

frustrated by the search for something that works! A therapist I saw

about how to deal with stress suggested that I treat my illness as I

would a friend - when it's very bad, have a sympathetic kind attitude

to it, talk to it. I sometimes feel very silly saying " Poor little

knee, it's so hard to be nothing but pain but I'll look after you and

you will feel better soon " :-) but it relieves my anxiety. It's hard

to do when it's the whole body but I do it and feel emotionally

calmer and the stress levels decrease and quality of life improves.

I've also noticed that relaxation meditation helps my stress levels

generally as long as I do it regularly (just watching each breath for

20 minutes and not worrying about whether my thoughts are going mad

or not, as they usually do).

Keep us informed about how you're going. Good luck.

Ros

[Guest guest]

Hi Vicki and Ros,

I am the other board member also on plaquenil and minocycline, and

my husband is an ophthamologist. Yes, plaquenil can cause eye

problems but it is really quite rare -- my husband has been

practicing for 25 years and has seen lots of RA patients -- and two

weeks is too soon. The dryness is likely just the progression of

your disease.

My eyes are drier than they used to be, but I still wear contacts

every day -- usually for 14 or more hours -- and only occasionally

need to take them up or use drops for comfort. I have been on the

plaquenil and minocycline for a year now, and I am doing great -- I

have cut back the plaquenil since I started at 400 mg a day, and I

am now down to 200 mg.

I agree with Ros -- see an eye doctor and have a complete exam. The

doctor can give you prescriptions to help make you more comfortable.

I also wish you could get back on AP -- that should also help you.

Take care.

Bonnie

[Guest guest]

Bonnie, my eyes are so bad without my contacts I cannot imagine wearing them

again for one minute let alone for 14 hours. One time I tried wearing them again

but just for one minute and I thought I'd die. If you consider yours dry and you

can wear your contacts so long, wow, I don't even know what to call mine

anymore. Dry doens't seem enough. After reading your email I feel like mine are

complete gonners. To think I use to wear my contacts totally comfortably and now

can't at all, I don't even want to think about it it makes me so upset.

From: bonlucas <bonlucas@...>

Subject: rheumatic Re: Is Plaquenil making me worse?

rheumatic

Date: Tuesday, October 7, 2008, 10:05 AM

Hi Vicki and Ros,

I am the other board member also on plaquenil and minocycline, and

my husband is an ophthamologist. Yes, plaquenil can cause eye

problems but it is really quite rare -- my husband has been

practicing for 25 years and has seen lots of RA patients -- and two

weeks is too soon. The dryness is likely just the progression of

your disease.

My eyes are drier than they used to be, but I still wear contacts

every day -- usually for 14 or more hours -- and only occasionally

need to take them up or use drops for comfort. I have been on the

plaquenil and minocycline for a year now, and I am doing great -- I

have cut back the plaquenil since I started at 400 mg a day, and I

am now down to 200 mg.

I agree with Ros -- see an eye doctor and have a complete exam. The

doctor can give you prescriptions to help make you more comfortable.

I also wish you could get back on AP -- that should also help you.

Take care.

Bonnie

[Guest guest]

lind, I was told to never go off of Plaquenil as it can induce flares.

About a year ago, my Rheumatologist introduced Quinacrine to my regimen with

Plaquenil. It is another anti malaria & it was used years ago during WWII

but sort of went out of fashion when Plaquenil came on the market. It has

to be compounded but is not expensive at all. I take 100mg per day & there

are new studies that show that it and Plaquenil work synergistically

together. I had done the Minocin thing w/o any appreciable results. My

goodness, what a blessing this drug has been. It has totally ELIMINATED my

fatigue and brain fog. I no longer have the desire to nap....ever. I can't

even tell you how this drug has enhanced the quality of my life. If you

want to google more about it, le Wallace has several publications

about it & one of them is called Reexamining the Use of Quinacrine in

Rheumatic diseases. It does not cause the potential eye problems that

Plaquenil can. It has the potential to make your skin slightly yellow in

appearance, but that's usually in high doses. I have very fair skin & it is

not noticeable at all on me. It's been a miracle for me.

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of lind Gittings

Sent: Saturday, November 08, 2008 3:38 PM

rheumatic

Subject: rheumatic Is Plaquenil making me worse?

Hi

I've heard from many RA sufferers about the 'brain fog' that often

seems to accompany the disease. I have it too, especially short term

memory problems. I also realised this year that I can't multi-task as

I used to and everything new that I learn is more of a challenge to

master. For myself I also wonder if it's about ageing, not that 63 is

old, but other friends without RA complain of short term memory

problems too.

I took Plaquenil for about a year, then went off it for a year, then

because of the pain went back on it again. I haven't noticed any

difference in the brain fog whether I was on it or off it. Since RA

causes inflammation throughout the body, maybe it does affect our

brains as well, the brain being part of the body. Some people on this

list and the Roadback list have said that their brain fog lifted once

they went into remission - makes sense - but for some that can be a

long long time.

Plaquenil has been very good for me in reducing pain levels. I don't

know whether the minocycline is doing anything since when I stopped

the plaquenil and was only on mino, the pain returned viciously. I

used naprosyn and celebrex to cope with it which caused kidney damage

and terrible digestive problems. With the minocycline I tried

different doses and different time frames and nothing made a

difference. Next year I'll stop the mino for a while and see if there

is any change.

I've also found that anxiety makes my brain fog worse. Before I used

to be able to function even during anxious or stressful times, but

now I have to nip anxiety in the bud as soon as it starts or I'm

useless intellectually.

Good luck with your investigations.

Ros

[Guest guest]

I noticed the brain fog about 4 days or so after starting the

plaquenil so I'm hopeful if I stop taking it that it will go away.

I'm only 29 so I don't think age is playing into it.

Out of curiousity how long were you on minocin? I'm trying to get an

idea of how long it takes for people to see results from it. At least

in terms of pain/inflamation going down.

I'm approaching the 6 month mark and I can honestly say I've noticed

no improvement.

>

> lind, I was told to never go off of Plaquenil as it can induce

flares.

> About a year ago, my Rheumatologist introduced Quinacrine to my

regimen with

> Plaquenil. It is another anti malaria & it was used years ago

during WWII

> but sort of went out of fashion when Plaquenil came on the market.

It has

> to be compounded but is not expensive at all. I take 100mg per day

& there

> are new studies that show that it and Plaquenil work synergistically

> together. I had done the Minocin thing w/o any appreciable results. My

> goodness, what a blessing this drug has been. It has totally

ELIMINATED my

> fatigue and brain fog. I no longer have the desire to nap....ever.

I can't

> even tell you how this drug has enhanced the quality of my life. If you

> want to google more about it, le Wallace has several publications

> about it & one of them is called Reexamining the Use of Quinacrine in

> Rheumatic diseases. It does not cause the potential eye problems that

> Plaquenil can. It has the potential to make your skin slightly

yellow in

> appearance, but that's usually in high doses. I have very fair skin

& it is

> not noticeable at all on me. It's been a miracle for me.

>

>

>

> _____

>

> From: rheumatic [mailto:rheumatic ]

On Behalf

> Of lind Gittings

> Sent: Saturday, November 08, 2008 3:38 PM

> rheumatic

> Subject: rheumatic Is Plaquenil making me worse?

>

>

>

> Hi

>

> I've heard from many RA sufferers about the 'brain fog' that often

> seems to accompany the disease. I have it too, especially short term

> memory problems. I also realised this year that I can't multi-task as

> I used to and everything new that I learn is more of a challenge to

> master. For myself I also wonder if it's about ageing, not that 63 is

> old, but other friends without RA complain of short term memory

> problems too.

>

> I took Plaquenil for about a year, then went off it for a year, then

> because of the pain went back on it again. I haven't noticed any

> difference in the brain fog whether I was on it or off it. Since RA

> causes inflammation throughout the body, maybe it does affect our

> brains as well, the brain being part of the body. Some people on this

> list and the Roadback list have said that their brain fog lifted once

> they went into remission - makes sense - but for some that can be a

> long long time.

>

> Plaquenil has been very good for me in reducing pain levels. I don't

> know whether the minocycline is doing anything since when I stopped

> the plaquenil and was only on mino, the pain returned viciously. I

> used naprosyn and celebrex to cope with it which caused kidney damage

> and terrible digestive problems. With the minocycline I tried

> different doses and different time frames and nothing made a

> difference. Next year I'll stop the mino for a while and see if there

> is any change.

>

> I've also found that anxiety makes my brain fog worse. Before I used

> to be able to function even during anxious or stressful times, but

> now I have to nip anxiety in the bud as soon as it starts or I'm

> useless intellectually.

>

> Good luck with your investigations.

>

> Ros

>

>

>

>

>

>

[Guest guest]

you are so young like me.

May I ask what your condition is?

I took Doxy a year without benefit. But another group claims that Doxy is not

enough, they add other antibiotics to the regime and certain supplements. I kind

of did it, but mostly just focused on the doxy. So i dont know to this day if I

should have done their protocol more seriosuly. Its hard for me mentally to take

so many antibtioics because I worry what can happen physically.

From: Petty <jamesapetty@...>

Subject: rheumatic Re: Is Plaquenil making me worse?

rheumatic

Date: Sunday, November 9, 2008, 12:36 PM

So are you saying you take this with Plaquenil or are taking it as a

substitute for it?

Also, how long were you taking minocin? What dosage?

>

> lind, I was told to never go off of Plaquenil as it can induce

flares.

> About a year ago, my Rheumatologist introduced Quinacrine to my

regimen with

> Plaquenil. It is another anti malaria & it was used years ago

during WWII

> but sort of went out of fashion when Plaquenil came on the market.

It has

> to be compounded but is not expensive at all. I take 100mg per day

& there

> are new studies that show that it and Plaquenil work synergistically

> together. I had done the Minocin thing w/o any appreciable results. My

> goodness, what a blessing this drug has been. It has totally

ELIMINATED my

> fatigue and brain fog. I no longer have the desire to nap....ever.

I can't

> even tell you how this drug has enhanced the quality of my life. If you

> want to google more about it, le Wallace has several publications

> about it & one of them is called Reexamining the Use of Quinacrine in

> Rheumatic diseases. It does not cause the potential eye problems that

> Plaquenil can. It has the potential to make your skin slightly

yellow in

> appearance, but that's usually in high doses. I have very fair skin

& it is

> not noticeable at all on me. It's been a miracle for me.

>

>

>

> _____

>

> From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com]

On Behalf

> Of lind Gittings

> Sent: Saturday, November 08, 2008 3:38 PM

> rheumatic@grou ps.com

> Subject: rheumatic Is Plaquenil making me worse?

>

>

>

> Hi

>

> I've heard from many RA sufferers about the 'brain fog' that often

> seems to accompany the disease. I have it too, especially short term

> memory problems. I also realised this year that I can't multi-task as

> I used to and everything new that I learn is more of a challenge to

> master. For myself I also wonder if it's about ageing, not that 63 is

> old, but other friends without RA complain of short term memory

> problems too.

>

> I took Plaquenil for about a year, then went off it for a year, then

> because of the pain went back on it again. I haven't noticed any

> difference in the brain fog whether I was on it or off it. Since RA

> causes inflammation throughout the body, maybe it does affect our

> brains as well, the brain being part of the body. Some people on this

> list and the Roadback list have said that their brain fog lifted once

> they went into remission - makes sense - but for some that can be a

> long long time.

>

> Plaquenil has been very good for me in reducing pain levels. I don't

> know whether the minocycline is doing anything since when I stopped

> the plaquenil and was only on mino, the pain returned viciously. I

> used naprosyn and celebrex to cope with it which caused kidney damage

> and terrible digestive problems. With the minocycline I tried

> different doses and different time frames and nothing made a

> difference. Next year I'll stop the mino for a while and see if there

> is any change.

>

> I've also found that anxiety makes my brain fog worse. Before I used

> to be able to function even during anxious or stressful times, but

> now I have to nip anxiety in the bud as soon as it starts or I'm

> useless intellectually.

>

> Good luck with your investigations.

>

> Ros

>

>

>

>

>

>

[Guest guest]

Well I'm not 100% sure what you are asking but I'll try to answer.

I have joint pain in my hands. It's exclusively in that region

thankfully no where else yet. I went to see an rheumy and my blood

tests came back negative for RA but he said that doesn't mean I don't

have RA. I had an MRI done on my hands and it showed joint damage and

inflamation according to my rheumy.

I started minocin about a month after the diagnosis and plaquenil the

month before that. So far no improvement. I stopped taking the

plaquenil a few days back and my hands are hurting more each day.

This was in July 08

Hopefully that answers your question.

>

> you are so young like me.

> May I ask what your condition is?

> I took Doxy a year without benefit. But another group claims that

Doxy is not enough, they add other antibiotics to the regime and

certain supplements. I kind of did it, but mostly just focused on the

doxy. So i dont know to this day if I should have done their protocol

more seriosuly. Its hard for me mentally to take so many antibtioics

because I worry what can happen physically.

>

[Guest guest]

Hi

I started the plaquenil in July 2006 and the minocycline in October

2006. By February 2007 I was much improved and even able to swim

freestyle for short distances! Looking over that year's records, I

still had many twinges and some times of flaring, but overall I was

much better. I don't know whether it was the plaq or mino or the

combination. I am still on the plaq, 200mg daily, and mino, 100mg

MWF. I'll let the group know what happens when I wean slowly off the

mino for a while to test its effects. Hope I don't get a flare but

wont be surprised if I do. Our systems are so sensitive to any change

it seems.

Ros

[Guest guest]

Vicki, you say it's hard for you to take so many abx because you are worried

about the side effects? What about all the toxic standard drugs that we as

patients are generally prescribed (mtx, cortisone, etc).. I choose abx

before those!

From: rheumatic [mailto:rheumatic ] On Behalf

Of Vicki

Sent: Sunday, November 09, 2008 3:41 PM

rheumatic

Subject: Re: rheumatic Re: Is Plaquenil making me worse?

you are so young like me.

May I ask what your condition is?

I took Doxy a year without benefit. But another group claims that Doxy is

not enough, they add other antibiotics to the regime and certain

supplements. I kind of did it, but mostly just focused on the doxy. So i

dont know to this day if I should have done their protocol more seriosuly.

Its hard for me mentally to take so many antibtioics because I worry what

can happen physically.

From: Petty <jamesapetty@... <mailto:jamesapetty%40att.net> >

Subject: rheumatic Re: Is Plaquenil making me worse?

rheumatic <mailto:rheumatic%40>

Date: Sunday, November 9, 2008, 12:36 PM

So are you saying you take this with Plaquenil or are taking it as a

substitute for it?

Also, how long were you taking minocin? What dosage?

>

> lind, I was told to never go off of Plaquenil as it can induce

flares.

> About a year ago, my Rheumatologist introduced Quinacrine to my

regimen with

> Plaquenil. It is another anti malaria & it was used years ago

during WWII

> but sort of went out of fashion when Plaquenil came on the market.

It has

> to be compounded but is not expensive at all. I take 100mg per day

& there

> are new studies that show that it and Plaquenil work synergistically

> together. I had done the Minocin thing w/o any appreciable results. My

> goodness, what a blessing this drug has been. It has totally

ELIMINATED my

> fatigue and brain fog. I no longer have the desire to nap....ever.

I can't

> even tell you how this drug has enhanced the quality of my life. If you

> want to google more about it, le Wallace has several publications

> about it & one of them is called Reexamining the Use of Quinacrine in

> Rheumatic diseases. It does not cause the potential eye problems that

> Plaquenil can. It has the potential to make your skin slightly

yellow in

> appearance, but that's usually in high doses. I have very fair skin

& it is

> not noticeable at all on me. It's been a miracle for me.

>

>

>

> _____

>

> From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com]

On Behalf

> Of lind Gittings

> Sent: Saturday, November 08, 2008 3:38 PM

> rheumatic@grou ps.com

> Subject: rheumatic Is Plaquenil making me worse?

>

>

>

> Hi

>

> I've heard from many RA sufferers about the 'brain fog' that often

> seems to accompany the disease. I have it too, especially short term

> memory problems. I also realised this year that I can't multi-task as

> I used to and everything new that I learn is more of a challenge to

> master. For myself I also wonder if it's about ageing, not that 63 is

> old, but other friends without RA complain of short term memory

> problems too.

>

> I took Plaquenil for about a year, then went off it for a year, then

> because of the pain went back on it again. I haven't noticed any

> difference in the brain fog whether I was on it or off it. Since RA

> causes inflammation throughout the body, maybe it does affect our

> brains as well, the brain being part of the body. Some people on this

> list and the Roadback list have said that their brain fog lifted once

> they went into remission - makes sense - but for some that can be a

> long long time.

>

> Plaquenil has been very good for me in reducing pain levels. I don't

> know whether the minocycline is doing anything since when I stopped

> the plaquenil and was only on mino, the pain returned viciously. I

> used naprosyn and celebrex to cope with it which caused kidney damage

> and terrible digestive problems. With the minocycline I tried

> different doses and different time frames and nothing made a

> difference. Next year I'll stop the mino for a while and see if there

> is any change.

>

> I've also found that anxiety makes my brain fog worse. Before I used

> to be able to function even during anxious or stressful times, but

> now I have to nip anxiety in the bud as soon as it starts or I'm

> useless intellectually.

>

> Good luck with your investigations.

>

> Ros

>

>

>

>

>

>

[Guest guest]

, I have been taking both plaquenil and minocin for a year, and

my RA is under very good control. I am on a low dose of plaquenil now

( only 1 200 mg/day -- not even a therapeutic dose for my size), and

the minocin 1/day, MWF. The plaquenil gets a bad rap -- it is really a

very mild drug with very few side effects, especially at low doses.

But it does take several months to work up to a level in your blood

that has an effect. Perhaps you just didn't give it enough time, and

you should do both again for awhile.

I hope this fast helps you sort this out --

Bonnie

[Guest guest]

I've been off the plaquenil for about 2 weeks now and I must say the

cloudiness/brain fog is almost completely gone. I nearly feel like my

old self as far as my brain goes. I'm convinced it was a side effect

from the plaquenil.

>

> , I have been taking both plaquenil and minocin for a year, and

> my RA is under very good control. I am on a low dose of plaquenil now

> ( only 1 200 mg/day -- not even a therapeutic dose for my size), and

> the minocin 1/day, MWF. The plaquenil gets a bad rap -- it is really a

> very mild drug with very few side effects, especially at low doses.

> But it does take several months to work up to a level in your blood

> that has an effect. Perhaps you just didn't give it enough time, and

> you should do both again for awhile.

>

> I hope this fast helps you sort this out --

>

> Bonnie

>