Is Plaquenil making me worse?

[Guest guest]

Bonnie,

I'm on plaquenil and minocyclin as well. 5 and 7 months respectively

or so. I stopped the plaquenil yesterday because I cannot handle how

spacey it makes me feel. I seriously feel like my iq is dropped by

half and my short term memory feels shot. It's like i have a haze in

my brain. Also, it helped my RA hand pain but not a whole lot.

I was wondering if you noticed this problem with it as well? Does it

make you hazy?

>

> 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]

,

I started having flu-like days and anemia and issues with short-term

memory and learning/retention over two years ago. The hand and foot

stiffness, etc., didn't present until February of this year. I was

diagnosed with RA in May of this year. Obviously I don't have a long

history with this disease, but I know the things I've experienced

over the last few years...without meds until June.

I have been on Plaquenil and Methotrexate, both of which I am

allergic to. I'm now Arava (20mg daily), Prednisone(10mg daily) and

Mincycline(100mg daily).

Regarding the memory and haziness issues, I've read numerous places

that the disease itself can cause these types of things. Throw in

meds like we take and it can only get worse!

I've found I need to make lots of lists, do one thing at a time, and

give myself a bit of a break when I get too hazy! Otherwise it just

become more and more frustrating and self-defeating. I hope you find

ways to cope.

Take care,

Marina

> >

> > 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]

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]

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 [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]

Yes, I take it in addition to Plaquenil. Here's a link

http://www.quinacrine.com/archive/wall89.pdf

I took Minocin 100mg twice per day for 2 years & then added Zithromax daily

to the regimen for a year. Never felt any appreciable improvement at all.

Joint pain was pretty well controlled w/Plaquenil alone, but the Quinacrine

kicked the fatigue and brain fog out of there for good. It's very strange,

I had always felt so fatigued for so long & after about a month on

Quinacrine, I didn't even realize it initially, but I was getting through

the entire day without the constant feeling of wanting to nap. It was only

when I pulled a very late night & got very little sleep one night & felt

fatigued the next day did it make me realize " Oh my gosh, I haven't felt

this level of fatigue in a really long time. " Now, I can only get 6 to 7

hours of sleep a night & I NEVER have the urge to nap or feel lethargic. In

fact, I would say that I am much more alert now than others my age. My BODY

still gets fatigued if I've had a long day on my feet, but my mind doesn't.

It's absolutely a wonderful drug with no side effects for me & it isn't

expensive at all. Quinacrine powder it's self is dirt cheap, but a

Pharmacist does need to put it into gel caps.

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Petty

Sent: Sunday, November 09, 2008 2:37 PM

rheumatic

Subject: rheumatic Re: Is Plaquenil making me worse?

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 <mailto:rheumatic%40> ps.com

[mailto:rheumatic@grou <mailto:rheumatic%40> ps.com]

On Behalf

> Of lind Gittings

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

> rheumatic@grou <mailto:rheumatic%40> 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

>

>

>

>

>

>