First time on Plaquenil

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sylviarose54
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Date Joined Apr 2010
Total Posts : 21
   Posted 11/3/2011 7:34 PM (GMT -6)   
I started taking plaquenil (actually the generic form) about a month ago. I have noticed that I am starting to feel less pain and not as tired. I take methotrexate (4 pills a week) and prednisone (7.5 mg a day). My main concern is the side effect on the eyes with plaquenil. It really scares me because my eyes are very important to me. Can anyone let me know their experience with this medication. Oh, by the way, I'm only taking (1- 200 mg) pill a day. Don't know if that will be changed down the road to more. Guess doctor wants to see how I do on it. Thank you for any info you can give.

Sylviarose

I have RA and Lupus.

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 11/3/2011 7:55 PM (GMT -6)   
I've been on 400mg per day since June 8th. I just went for my first evaluation with my optomalogist (that's an MD eye doctor). He said it is rare to have problems, but it's important to be preventive and see him regularly for evaluations. If you're careful and watch for any vision changes you'll be fine.

You'll feel even better in three months on that dosage. I'm at six months and 95% of my pains are gone. I still get tired but it's not as bad. This week is a flare week for me, though. Energy is gone for now...
Joy

Lynnwood
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Date Joined May 2005
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   Posted 11/3/2011 8:04 PM (GMT -6)   
Eye issues are quite rare, but you do need to see the ophthalmologist (what Joy mentioned above, just she had a typo) once a year just to be sure. Another thing to do is a home self-screening (found in our Lupus Resources thread above) www.healingwell.com/community/default.aspx?f=29&m=184347&g=1234444#m1234444.

I've been on 400 mg/day since early 2002 without any issues. Actually, my rheumy just told me I could go down to 200 if I wanted, but I'm a little afraid to do that!

It takes 4-6 weeks to really build up in your system, but can start helping the fatgue within a few days! Hope you feel better quickly!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

ITPSLE
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Date Joined Nov 2011
Total Posts : 2
   Posted 11/4/2011 6:16 AM (GMT -6)   
I have been on Plaquenil 200mg (sometimes 400mg when Lupus flares up) since 2006 and never had any problem with it. I get my eyes checked once a year to make sure everything is ok.

LAWCHICK
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Date Joined Jul 2010
Total Posts : 468
   Posted 11/4/2011 8:48 AM (GMT -6)   
Hi, I also started just taking Plaquenil and trust me my eyes are very important to me too! I am on 200 mg a day dose due to my body weight being low. I just had my first eye exam done recently and have another one in 3 months. My eye doc told me that its very rare to have vission issues especially on a low dose of 200 mg per day. He says everyone he ever saw eith eye issues (not many) were on very high doses for years. The key is to get a good eye doc that knows what to look for (such as the mitton drawf dot ect) and knows what testing to do. I have noticed that I am less tired since starting this drug but the pain is still an issue.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/4/2011 5:10 PM (GMT -6)   
Ooops! Sorry I have trouble sometimes remembering how to spell. Stupid fog! Always sneaking in on me and embarassing me. *_*
Joy

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 11/4/2011 5:43 PM (GMT -6)   
No problems, Joy -- I've never been able to spell, even before fog, and I was on just a few minutes after you so I don't think anyone ended up lost!

Now I think LAWCHICK must have a typo -- "mitton drawf dot" is a total mystery to me!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sylviarose54
Regular Member


Date Joined Apr 2010
Total Posts : 21
   Posted 11/5/2011 9:18 AM (GMT -6)   
Thanks to everyone who replied. I am supposed to see an eye doctor on the 15th of this month and I'm sure I will get my eyes checked when needed. I hope I am able to stay on this medicine because it seems to be helping so far. Thanks again to everyone.

sylviarose

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 11/8/2011 11:17 AM (GMT -6)   
Haha Lynwood I did! Its the mittendorf dot!

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 11/8/2011 11:48 AM (GMT -6)   
Mittendorf's dot a congenital anomaly manifested as a small gray or white opacity just inferior and nasal to the posterior pole of the lens, representing the remains of the lenticular attachment of the hyaloid artery; it does not affect vision.

Ah -- congenital issue, so can't have anything to do with Plaquenil!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

jeanneac
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Date Joined Feb 2009
Total Posts : 1916
   Posted 11/12/2011 11:45 AM (GMT -6)   
I am on 400 mg of plaquenil since January 11. Going for my first eye exam since starting the drug on Monday. My rheumy said the eye thing is extremely rare and to get checked every 6 months regardless. I also have type 2 diabetes, so I need to get checked anyway.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

stillinshock
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/16/2011 9:15 PM (GMT -6)   
I've been on Plaquinel for so many years that I have to stop to think how long it has been.  Maybe 10 years?... Usually the dose has been 200mg twice a day but sometimes less.  I am very glad I started taking it as I think it has kept my lupus from progressing--I've not had major organ problems.
 
My eye doctor said that he had worked with hundreds of patients who were taking plaquinel in a research program and in all of his years he has never seen a patient whose eyes were affected. I quit worrying about it.
 
See your eye doctor regularly out of precaution-- but don't worry about it. I think this is one of the medications with the least side affects to be concerned about.
SIS

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 11/16/2011 10:17 PM (GMT -6)   
I've been on Plaquenil since 2007, 400 mg a day.

Although its a possibility, eye problems are rare from Plaquenil. That being said, my doc has had a case on another patient.

It's important to get a baseline prior to taking the med or very soon after starting it and when your ophthalmologist decides its best for you to come back for your regular checks, usually between 6-12 months.

It's a very common concern for people who begin this med, I think I was very concerned also when I began taking it.
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Dysautonomia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Cellcept, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin, Salt Tablets

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 11/17/2011 3:25 PM (GMT -6)   
I tried to take Plaquenil but it made my tongue swell up and I wanted to claw my face... so my Dr. took me off of it...

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 11/17/2011 3:32 PM (GMT -6)   
Weleetka, Were you taking the generic or the Plaquenil formulary? I think some people can't take the generic because they are sensitive to the fillers. You may have had a reaction to that. That's a shame, I think Plaquenil (hydroxychloroquine) is a great med and people who can take it should, IMO of course.
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Dysautonomia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Cellcept, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin, Salt Tablets

ISUgirl22
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/6/2012 7:40 PM (GMT -6)   
I am 21 years old and I have just been diagnosed with inflammatory arthritis. I've just started the generic form for Plaquenil (200mg twice a day), does anyone know any long-term effects it might have? I assume I have a long ways to go with this medication and I am only 21..also they are going to do further tests for RA and Lupus but this medication seems to be a good starting point for someone who might have either disease.

Thanks

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/6/2012 10:25 PM (GMT -6)   
From what I've read it's the safer of all the RA/Lupus Drugs.
Joy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/6/2012 11:39 PM (GMT -6)   
Plaquenil is used to treat certain auto-immune diseases (lupus, rheumatoid arthritis). It belongs to a class of medications known as disease-modifying anti-rheumatic drugs (DMARDs). It can reduce skin problems and prevent swelling/pain and flares in Lupus, though it is not known exactly how the drug works.

I have to use the name-brand Plaquenil as I seem to be mildly allergic to the generic (rash). But I've been on it since 2002 without any noticeable side effects. Once in a while, it can start to affect your eyesight, and your doctor should have advised you to see an ophthalmologist at least once a year s a precaution.

There is also an on-line test that you can do at home - Plaquenil and Your Eyes. This page will also give you more information.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/7/2012 10:43 AM (GMT -6)   
I don't see holes in the grid but my right eye sees double horizontal lines. :(
I do have astigmatisim (sp?).
Joy

kookieq30
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/2/2012 11:24 PM (GMT -6)   
I have just recently (2 1/2 weeks) started on plaquenil. I don't have lupus but ZI'm being treated for an undiagnosed inflamatory authritis. As of now they are unable to find a name for what I have. Since starting the plaquenil I have experienced servere heartburn and in the last two days servere leg cramps that wake me from sleep. The eye concerns are a top priority for me becaause I have already had a retna detachment in my right eye and have retnopathy (holes in the retne) in my left. (All before begining plaquenil) I guess my question is is anyone else experiencing these side affects and what can I do to improve or stop the problems? I read somewhere about taking the plaquenil with milk. (I''m lactose intolerant, have acid reflux and an ulcer) Any suggestions about the leg cramps? It's like I'm adding to the problems instead of treating them. I'm unable to take prednisone which was helping the swelling and joint pain but I had to be removed from it because of my osteperosis and bone infarct. I'd like to give this medicine a chance to work but I have to manage the side affects. All feedback is appreciated
Thanks
Kookie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/3/2012 12:37 PM (GMT -6)   
Plaquenil needs to be taken with food or milk. It's probably irritating your gerd and ulcer.
Have you had your potassium level checked? Are you on any type of diarectic for your swelling?
Joy

kookieq30
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/4/2012 2:36 AM (GMT -6)   
Joy
Thanks for responding. I was on a diaretic for about a year but the results didn't justify my continuing to take it. It's so frustrating because the prednisone was really helping but I can't stay on it. Today is like the third day since I've been off the pred...... My hands and feet have already began to swell. Also with the swelling my bp has gone back up. I will make it a point to take the plaquenil with my morning and even meals. It's just been dificult to eat because of the heartburn. I found that applying "Manteca la Ubre" (which is similar to Icy hot but without the icy), helped last night with the muscle cramps.

kookieq30
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/4/2012 2:40 AM (GMT -6)   
Oh also I'm taking the generic plaquenil and now I'm curious as to rather or not the side affects I'm having has more to do with the "fillers" in the generic?

Moky
Regular Member


Date Joined Mar 2012
Total Posts : 22
   Posted 3/4/2012 8:21 PM (GMT -6)   
I have been taking plaquenil, generic also, since 2005. Like others say, rare to affect eyes, but can cause blindness that goes away when med is stopped. I have MCTD. He thinks the plaquenil (200mg) and Vit D (50,000 units RX every two weeks) hopefully will keep me from developing full blown lupus. ANA positive is an alarm for various autoimmune diseases.
Moky rolleyes

kookieq30
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/11/2012 11:35 PM (GMT -6)   
Monky,
 
I understand that the eye side effects are rare but it scares the crap out of me. I have already had a retna detachment in my right eye and never regained my full sight back. I have a complicated history with my eyes and tend to always be the one that experiences the most servere side affcts. I'm going to give it some time to work but I can't sacrafice my vision....... not even if it meant controlling all my joint and swelling issues. sad
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