Plaquenil for psoriatic arthritis

[Guest guest]

Hello all:

I'm a newbie here, so I will introduce myself. I recently started

seeing a rheumy because I have swollen painful joints, and positive

for ANA and RF. The rheumy has ordered more tests. (ten vials of

blood worth of tests). Based on my symptoms and the positive ANA and

RF, they suspect, psoriatic arthritis, rheumatoid arthritis, and/or

lupus. They sent me to have an eye exam, and they are sending me to a

dermatologist, because what I thought was dandruff may actually be

psoriasis.

They started me on methotrexate and folic acid and I am to add the

Plaquenil now that I have had the eye exam. I am a little confused

though. I have been reading about these drugs, and I have read

several places that people with psoriasis should not take Plaquenil,

because it can cause the psoriasis to flare up.

I don't know for sure that I have psoriasis, but I really don't want

to have a major flare of it if I do have it. I am a little leery of

taking the Plaquenil. Anybody else take Plaquenil and have it

aggravate the psoriasis?

Thanks for any input.

[Guest guest]

I have never heard that Plaquenil can cause flares. In fact most people take it

at some point or another. Are you sure you aren't confusing it with another

drug. My rheumatologist told me It's one of the oldest and safest drugs they

have to treat PA because side effects are very rare with it.

I have PA and its the one drug that I can take for this other than Ultram due to

being on dialysis. It takes a couple of months for it to really be effective

you don't usually see any improvement for 10 to 12 weeks. I started it over 6

months ago and I can now get away with taking 1 Ultram a day and some days I

take none instead of having to take 4 or 5 a day.

Celeste

[Guest guest]

My rheumatologist mentioned that possibility but it hasn't happened for me. My

psoriasis has always been on the mild side thankfully but it is no worse after a

month of Plaquenil.

Gareeth

catam_99 wrote:

>

> I don't know for sure that I have psoriasis, but I really don't want

> to have a major flare of it if I do have it. I am a little leery of

> taking the Plaquenil. Anybody else take Plaquenil and have it

> aggravate the psoriasis?

[Guest guest]

Hi ,

<<The rheumy has ordered more tests. (ten vials of

blood worth of tests)>>

Is he a doctor or a vamp? ;-)

<<Anybody else take Plaquenil and have it aggravate the psoriasis?>>

Plaquenil is a brand name for hydroxychloroquine. I took plain

chloroquine for three years, which has the same beneficial effect on

arthritis. Some people say that the side effects of plain chloroquine

are stronger than for hydroxychloroquine, but other people say the side effects

are just the same.

I took chloroquine for three years. For the 15 years before starting it, my

psoriasis was confined to my scalp. While I took chloroquine, the psoriasis

spread all over my body. I don't know if the spreading was caused by the

medication, or if it was incidental, but the suspicion is strong.

After two years taking chloroquine I started having problems with my

eyesight. After another year it became distressing. The ophthalmologist told me

to either stop taking chloroquine NOW, or accept blindness in a few years. I

stopped, against the advice of the rheumy, who said that chloroquine never had

an effect on the eyes.

I'm now about 6 years off chloroquine. I still have psoriasis all over the body,

and the eyesight has recovered about half of what was lost.

And yes, the chloroquine helped a lot with the arthritis. But the cost in side

effects was too high.

Manfred.

\

[Guest guest]

I have read this in several places and was also told by 2

rheumatologists that they would not prescribe Plaquenil to me as it

is contraindicated w/ psoriasis. However, in your case, maybe it is

worth the try. I know an immunologist who told me when I was first

diagnosed that she felt Plaquenil was much safer than methotrexate-

which I am on. Best of luck whatever you do!

in MN

[Guest guest]

Celeste,

Thanks for the info. Here is a quote from the drug information from

http://drugs.com.

" Unless you are directed to do so by your doctor, do not take Plaquenil

if you have psoriasis (a recurrent skin disorder characterized by

patches of red, dry, scaly skin) or porphyria (an inherited metabolic

disorder affecting the liver or bone marrow). The use of Plaquenil may

cause a severe attack of psoriasis and may increase the severity of

porphyria. "

This is what was confusing me. I started the plaquenil last night, so I

will just hope it goes well. So far so good. I hope it works, because

my joints sure hurt.

Thanks

[Guest guest]

Manfred,

I'm so sorry that happened. If what I have is psoriasis, it is

confined to my scalp, one elbow and maybe my toenails. I see the

dermatologist on 12/4 to find out for sure. Then back to the rheumy

on 12/12 for the results from the vampire ;-) . I asked the lab

technician if she was planning on leaving any for me.

Thanks for your input.

[Guest guest]

Hi Manfred,

I took Plaquenil about 16 years ago, and it hurt my eyes also. The damage was

not severe, It was in my Peripheral, 16 years ago they said that was a side

effect. Were you in the states or abroad when you got Plaquenil?

And really geography has nothing to do with it. My sister had been mis-diagnosed

with Glaucoma and was treated, had a second opinion and it turned out that she

did not have it. But this doc sounds behind the times!

[Guest guest]

Hi Gareeth, , ,

> My psoriasis has always been on the mild side thankfully but it is no

> worse after a month of Plaquenil.

One month isn't enough time to tell. Give it three months to see the

first effects and side effects. From then on, the side effects keep

building up. If the P flares, that should be pretty obvious, and you can

stop. But be careful with the eyes. If you aren't very attentive to any

changes in the performance of your sight, you might miss any warning

signs until it's too late. When you notice them in time and stop

chloroquine, most or all of the damage can be undone, but beyond a

certain point the damage will be permanent.

Somewhere I read that the total lifetime dosis of chloroquine, before

real damage sets in, is about 300 grams. With the usual dosing, that

means that each of us can use chloroquine for three years before running

into trouble. But of course the exact tolerance is very different for

each person.

> Were you in the states or abroad when you got Plaquenil?

Abroad. I live in Chile. I have been in the states only for a few days,

for a satellite technology convention more than ten years ago! That time

I got to know one airport, two hotels, the Florida Turnpike between

Miami and Orlando, and a crazy thunderstorm with lightning everywhere,

that reset our rented car's motor control unit and left us without power

and all gauges pegged, on the left lane of the Turnpike!

Someday I ought to return to the states, and do some sightseeing. Maybe

I do it, if someday the hysteria about terrorism fades, and the US again

becomes as welcoming to foreigners as it used to be.

And specially, if I can get my PA under control so that I can again

trek. I wouldn't really want to drive to one of those fabulous

wilderness preserves, and then not be able to stray from the car!

Disneyland does NOT attract me as much... Actually I spent several days

in Orlando and did NOT go to Disneyland! Crazy me!

> And really geography has nothing to do with it. My sister had been

> mis-diagnosed with Glaucoma and was treated, had a second opinion and

> it turned out that she did not have it. But this doc sounds behind

> the times!

I really don't know. Here chloroquine is the first line therapy por PA.

Any rheumy I asked tells me that. It is considered safe, effective, and

inexpensive. Doctors formally know about the risk of side effects such

as P worsening and eyes being affected, but they insist that these side

effects are extremely rare and totally reversible, which truly does not

seem to be the case.

> I'm so sorry that happened. If what I have is psoriasis, it is

> confined to my scalp, one elbow and maybe my toenails.

So you have a little bit more of it than I had when I started

chloroquine. Now I have it on the scalp, elbows, arms, legs, knees,

feet, back, and belly button.

> I see the dermatologist on 12/4 to find out for sure. Then back to

> the rheumy on 12/12

Isn't it crazy to have to constantly go to TWO doctors to diagnose and

treat ONE disease? They are so specialized that each sees just one

manifestation of our disease!

For a long time I have been dreming about ONE doctor, who knows about

our malady, and will treat entire patients, not either their skin OR

their joints.

> for the results from the vampire ;-) . I asked the lab technician if

> she was planning on leaving any for me.

I'm sure they are having a cocktail on the leftovers.

Manfred.

[Guest guest]

I've been interested in this discussion about plaquenil and eye damage since I

have a friend with lupus who's been on it for about 7 or 8 years with no side

effects except - I believe - elevated liver enzymes which required that she cut

back her dosage for about 9 months ot a year.  Then she was able to return to

her normal dosage.  Anyway, here's what the Lupus organization's website

says about plaquinel/chloroquine and eye damage.  It's interesting that

plaquinel is a first line treatment option in So America; I do not believe that

is the case here.  My friend who is plaquinel for lupus was prescribed it only

after all other drugs failed.  (Lupus is an auto-immune disease with some

symptoms that are akin to RA and PsA.) 

A major potential side effect of anti-malarial use is the possible damage to the

retina at the back of the eye. It is important to note that retinal damage due

to the use of anti-malarials is dose-related, and the low doses currently used

in the treatment of lupus are rarely associated with this condition. Most cases

of eye disease occur in people receiving more than 400 mg of Plaquenil or more

than 250 mg of Aralen daily. Atabrine is not known to cause retinal damage.

Recent evidence shows that there is no irreversible eye damage with Plaquenil in

doses of 5 mg/kg (2.3 mg/lb) per day. For the average-weight person, this is

less than 400 mg per day, if used for less than 10 years.

Retinal damage that is caused by Plaquenil is sometimes reversible if it is

detected early. However, damage due to the use of Chloroquine (Aralen) is

irreversible.

* It is necessary to see an eye doctor or ophthalmologist prior to beginning

treatment with anti-malarials in order to have a baseline examination.

* A follow-up examination every three to six months thereafter is also

necessary. Eye exams of the macula to rule out fine pigmentary disturbances

should be performed at least every year.

* On many occasions, an ophthalmologist can see mild changes in the retinal

pigment that indicate early damage.

* In addition to regular eye check-ups to test visual acuity and eye pressure,

tests for color vision and visual field might be necessary.

 Joanna Hoelscher

[Guest guest]

Thanks to all who replied to my original question. I am new to this

autoimmunity thing, so any information and wisdom is greatly

appreciated. Just having some idea what one might expect helps.

I agree with Manfred. It seems ridiculous to me that the rheumy

thinks I may have psoriasis, but has to send me to a dermatologist to

find out for sure. If they are treating psoriatic arthritis, why

can't they definitively diagnose psoriasis? Maybe so I have to pay a

dermatologist too?

Joanna: Thanks for the info about the eye exams. I did have a

baseline exam before I started taking the Plaquenil, and I am

scheduled to return in six months. I also specifically asked the

ophthalmologist what signs to look for that might indicate a problem,

and he told me what to watch for.

[Guest guest]

<<Isn't it crazy to have to constantly go to TWO doctors to diagnose and treat

ONE disease? They are so specialized that each sees just one

manifestation of our disease! For a long time I have been dreaming about ONE

doctor, who knows about our malady, and will treat entire patients, not either

their skin OR their joints.>>

Manfred,

How true! I've been moaning about this for years now. Part of the problem, I

think, is the name that has been given to our condition: Psoriatic Arthritis.

It's totally inadequate to describe the bundle of symptoms we have to put up

with (psoriasis and arthritis, sure -- but also fibromyalgia, tendinitis,

fatigue, brain fog, nail problems, sleep problems, depression etc etc), and sort

of misses the point. These are only symptoms, and the underlying cause -- the

actual disease, illness condition or whatever you want to call it -- is an

overactive immune system.

I have mentioned a couple times already to this group that I feel we would get a

better deal if we had a better name for the condition. Perhaps that would prompt

a more holistic approach by the medics rather than being dealt with by

specialists like rheumatologists and dermatologists, and it would certainly help

when we have to explain what's wrong with us to family, friends and colleagues.

A label, such as Lupus, MS, or XYZ Syndrome, is more easily understood and

recognized, and has the added merit of being less specific about how it

manifests itself. After all, many PA sufferers show no signs of psoriasis, and

some, like myself, are in remission from the arthritis but have other

debilitating symptoms.

It's a shame that allopathic doctors have not yet adopted the holistic approach

to many diseases. It makes it very tempting to fall for the promises of

" alternative " practitioners who offer a whole-person approach, but sell us a

load of hooey!

Regards

Marcus

[Guest guest]

My son has a complex medical condition called septo-optic dysplasia.  He has to

see an endocrinologist, pulmonologist, neurologist, and pediatric

ophthalmologist.  We have been blessed to find a wonderful pediatrician who

coordinates between all of the specialists and helps out when they are giving

contradictory advice.  I also have a great family practice doc who's really on

top of things and I see him for most of my ongoing stuff - he follows up with

what the rheumatologist is recommending.  The reason I mention this is that the

difficulty dealing with multiple docs isn't confined to PsA.  Finding a main

doctor or nurse practitioner that's really understanding can help coordinate

among all of the other medical providers.

 

Opal

 

[Guest guest]

My understanding is psoriatic arthritis does not present with clear test results

the way other arthritis does.  I was diagnosed by a dermatologist via a skin

biopsy, who sent me to a rheumatologist to investigate the pain.  Blood work was

done to rule out other similar conditions.  There are a lot of autoimmune

conditions and they all present differently from one person to another.  They

are really hard to diagnosis.

 

Carol Frick

[Guest guest]

:  from what I've read, there are instances in which psoriasis does not

show up in people with PsA until after the arthritis part develops.   Maybe your

rheumy just wants somebody to confirm his diagnosis since this whole thing seems

sometimes more like a " guessing game " than anything else - particularly since so

few of us have the genetic marker that would more clearly indicate the presence

of PsA.  When I first went to the rheumatologist, she listened to all my

symptoms and declared that I had fibromyalgia - even called my inability to

concentrate " fibromyalgia fog " .  Only after that pronouncement did she notice

that I'd put down on my medical history that I had psoriasis, though it hadn't

been active for at least 3-4 years and I only ever had it on my elbows.   Then

she immediately changed the diagnosis to PsA and looked at my blood tests (the

ones ordered by my internist) which indicated an elevated sed rate.   (My

internist still

thinks I have fibro but who knows?  I sure don't.  All I know is that Enbrel

pretty much has had me in remission for almost a year.)   

Joanna Hoelscher

[Guest guest]

Joanna Hoelscher wrote:

> : from what I've read, there are instances in which psoriasis

> does not show up in people with PsA until after the arthritis part

> develops.

That's how it was for me which is why they thought I had an atypical form of

spondylitis for 20 years. Then when I was having my flu shot a few months

after my arthritis went out of control my GP noticed that I had psoriasis and

said that could be meaningful as far as my arthritis situation went and next

thing I know my rheumatologist is changing my diagnosis. Not that it has

much bearing on treatment as far as I can tell but outcome is a bit

different between the two.

Gareeth