Plaquenil and failed vision test?

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momto3
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Date Joined Nov 2006
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   Posted 8/25/2008 1:08 PM (GMT -6)   
So I have been on Plaquenil about 2 years now and this morning I went in to have my eyes checked and I failed? It seems that my eyes have deterioted since my last visual field test due to the Plaquenil..The eye doctor is going to contact my rheumy confused Has this happened to anyone else?She told me it means that I am at a toxic level of plaquenil, and that she will talk with my rheumy and see if I either need to stop taking it or cut my dose in half..I have to return in three months for another test. I really need the plaquenil and the times I have stopped taking it were miserable shakehead .
 
Thanks in advance
 

CaMama
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   Posted 8/26/2008 1:47 AM (GMT -6)   
Please tell me more. I've been on a little over 2 years. For the last year, I've been having trouble with focusing. I keep blaming it on allergies, liver, etc...but worry. Nights are the worse with vision (blame it on tiredness with allergies, etc.) Eye doc says I look okay...says toxicity is very rare with the dosages they perscribe these days....but I still worry. Cataracts, etc run in my family, but I'm only 38 - seems a bit young for those.
 


elcamino
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Date Joined Sep 2005
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   Posted 8/26/2008 7:31 AM (GMT -6)   

Wow Momto3,

I'm sorry you're dealing with this.  I had understood from both my rheumy and my opthamologist that plaquenil toxicity is extremely rare, and usually only occurs after many many years of taking the drug (15+).  Definitely follow-up on it, but are they sure it's the plaquenil and not some other disease process?  I only ask because when I first went to an opthamologist for plaquenil monitoring, I was identified as a glaucoma suspect because I have a very abnormal optic nerve in my right eye.  Visual field tests (in addition to optic nerve imaging) are also used to monitor glaucoma, and it will also decrease your visual field, as plaquenil can.  I'm no longer taking the plaquenil, but opthamologist is insistent on following me for possible glaucoma.  Hence, I still get a visual field test and optic nerve imaging study done every year.  Glaucoma is related to AI disease (usually the low-tension glaucoma) due to raynaud's, which can cause a vasospasm around the optic nerve (or something like that).  Since I always have normal tension in both eyes, despite optic nerve damage, they believe I could be developing the normal tension glaucoma. 

I hope you get your eye situation figured out, and certainly if it's the plaquenil then stop taking it.  Is damage from plaquenil reversible once the drug is stopped?

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


momto3
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Date Joined Nov 2006
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   Posted 8/26/2008 8:44 AM (GMT -6)   
Hi ladies,
 
Well I have had the visual field tests done before since I have occular migraines and back then they were completely normal and the last time I had it done the doctor didn't mention any problems? but this time around she put both results side by side and showed them to me and I could see how this time especially in my right eye has deteriated.  I have also noticed that even with my glasses on, my vision is blurry..for example if I cover one of my eyes, my vision is still somewhat fuzzy (at a distance).  I have been getting more frequent headaches and that is something I normally don't get.
 
El...I always get the glaucoma screening done and have never had any pressure noticed. I always worry about that too!! All of the other tests they do after you turn 35, I think turned out okay? The doctor firmly believed that my  vision issue is caused by the plaquenil and I told her I only take 400mg per day since I looked it up and I found that it is usually caused by higher doses.  However, she said it can be caused at the dose I am taking.
 
I'm really dissapointed but I haven't been to the rheumy yet on this one and will have to wait and see but at the same time this is scary..she said if I continued to take it at a dose that is toxic to me it will eventually cause blindness shocked I'm thinking to myself this is the only medication that I've found that gets rid of the horrid fatigue and joint pain even with the Enbrel and MTX so I'm not sure what I'm going to do.
 
Camama..did you ever get a baseline test done before you started your plaq?? Have you asked your doctor to do the testing specific for plaq users? If not you need to because some of your symptoms sound suspicious.  However, it could be alleriges..my daughter gets allergies and her eyes get red and puffy..very uncomfortable!
 
Between the low blood count and my eyeballs, I have to wonder about these medications turn

CaMama
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Date Joined Mar 2005
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   Posted 8/26/2008 10:33 AM (GMT -6)   

Yikes. I'm SO sorry to hear this (didn't mean to be heartless in my last email by not stating that first! nono ) I know exactly what you mean about Plaquenil being the one drug that works the best. That is the case for me as well. And it's a total drag you may have to stop it (though I'm wondering if you should get a 2nd opinoin? And not the rhuemy's b/c they NEVER think the RA drugs have ANY side-effects! tongue )

As for your question - the opthamologist I see knows I'm there b/c of the plaquenil. I see him every 8 months (it was supposed to be every 6, but because I "look good" and toxic reaction "is rare" he moved it to every 8.) My rhuemy at the time of giving me the drug did not send me for a basline test - even though I kept asking if I should be sent to the eye doctor. My PCP (who has since retired) thankfully got me going regularly, but I was already on the med for at least 6 months prior my first appt. I keep telling him I've been having a blurriness problem, but the tests aren't showing (so he says) any indication there is a problem. However, all these emails about it lately are getting me worried that maybe he's being so nonchalant about it that he might miss something?

So, aside from going blind if you continue taking the med - if your problem IS caused by the plaquenil, now that you stopped and caught it now, will some or all of the problems subside?

oh - my eyes do not get red and puffy, I just have a hard time focusing. At night, the inside of my house looks like it's foggy.


 


elcamino
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Date Joined Sep 2005
Total Posts : 1740
   Posted 8/26/2008 12:13 PM (GMT -6)   

Camama,

Have you been to an opthamologist for your eye problem (blurriness)?  I love my rheumy, but I would not trust him with my eyes.  He is not an eye doctor, and in fact, he would probably be the first to tell me to see an eye doctor (no pun intended). 

I hope both of you get your vision problems worked out.  And momto3, if you have to stop the plaquenil, I pray that you find another drug that works as well, if not better than the plaquenil did.  I know that I found enbrel and mtx work far better for me than the plaquenil.  I guess the downside is that plaquenil is supposedly the safest RA drug. 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 8/26/2008 1:07 PM (GMT -6)   

Yes, it is an opthamologist I tell the bluriness too.

My rhuemy wants me to switch to Enbrel.....but I'm still scared after having such a bad reaction to Remicade to try another biological, plus if the plaquenil is working well....why stop it? Unless it's the root cause to my eye problems..... sad

****


 


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 8/26/2008 3:16 PM (GMT -6)   
Here is a link to the at home eye test for plaq vision problems-no substitute for a good eye doctor but if you are concerned its a good screening tool their is also some info on plaq eye problems. http://www.eyesurgery.com.au/plaquenil.html

My eye doctor says these problems are extreemly rare-my rhuemy keeps giving me lectures about the possiblitly of eye problems every time I tell her no I don't want to go off plaq.
Sj

CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 8/26/2008 3:39 PM (GMT -6)   
Thanks. I'll check the site out. My eye doc and rhuemy tell me the same thing....but you can't be too careful.

 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 8/26/2008 5:32 PM (GMT -6)   

Hi and my rheumy flips out about pred so it will be hard to say what he will think about this? Camama, I'm not sure how your eye doctor can miss it since the visual field test is used to detect it and if you are missing the dots because you aren't seeing them then you aren't seeing them shakehead My doctor never sent me for a baseline either but I have had one prior to the plaq and it was fine..When you say your house is foggy? that is not good my dear!!! Do you wear contacts?? Do you mean like a veil has been pulled down over your eyes? Please get this checked out.

 

El..I looked up meds and there is one called Arava and it seems to be similar to Plaq so maybe this will be an option.  I haven't stopped taking it but last night only took one pill instead of two. Even with the Enbrel and MTX without the Plaq I'm really tired.

Thanks ladies!!

 

 


CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 8/27/2008 11:58 PM (GMT -6)   
I take Arava with the plaquenil. Arava is in the same med family as methotrexate.
 
I don't recall the opthamologist showing me something with dots or anythign like the link SJ gave us....I just saw him in April or May. I seemed to see the grid okay on that web site.
 
If I look across the room/house - it looks like there is a veil of haze in the house. Maybe it's dust! LOL tongue   Seriously, it does freak me out at times. I know my dad and his mother both had pretty bad cateracts - but when they were much older than I am, of course. I think that can do it too....I do wear glasses, and though they really help me see MUCH better, they supposedly (in the scheme of perscriptions) aren't overly strong. But, it is mainly at night I notice it...so maybe there are other factors involved and I'm worried for nothing? I worry if it's my liver or if my body's finally succumbed to diabetes (GOD forbid!) causing the eye issues. Man, I've messed myself up. sad
 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 8/28/2008 8:45 AM (GMT -6)   

Camama...The grid that Sj posted is the same one showed to me at my appointment this week, that is how it always begins, and no I cannot see the four corners of the grid (outer edges). They are not in my line of vision.  Maybe that should have been my first clue? I had to laugh at the dust though..it is hard to keep up isn't it?? I have gone down on my dose the last few days and I'm already starting to feel stiff, so I guess I will just have to get used to it.  I thought the Arava was like the Plaquenil.

Have you been tested for high blood sugar? Fasting and glucose? if this runs in your family or you had the gestational maybe you should get it checked out.  Since you are on the MTX, I'm assuming your doctor checks  your liver functions? Maybe go to your pcp and discuss your vision troubles and see if he or she has any ideas as to what it could be if your liver functions have all been normal.  I can see why that would be troubling!!  When I started having the visual auras and would lose parts of my vision it was disturbing...I thought I had some sort of brain tumor, and ended up at a neurologist only to find that I had migraines without the pain..So when something is not right it is always worth the effort to keep plugging away until you figure out just what it is that is causing the issue.

As for the Enbrel..I was getting desperate but I understand being hesitant. It works okay but I still have weeks where I feel as if it isn't working as well as it should be.

CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 8/29/2008 8:58 PM (GMT -6)   
Well, I did not have gestational diabetes, but my sugar levels have been borderline. I have had liver trouble since I got ill in 2003. I'm not on methotrexte but Arava. Those and Plaquenil, I think, are all DMARDs....it's possible the plaq is in the same family as Arava and metrx, but I can no longer remember.
I've heard of having migranes w/o the pain...that must be pretty scary.
 
 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted Yesterday 4:29 PM (GMT -6)   
Camama...I think the Plaquenil and the Arava are in the same group? but who knows they all seem to blend in at this point, I have lost track as well.  I had the gestational diabetes when I was pg, and it runs in my family (my mom has it) but I have been tested a few times and it has been okay too.  The occulars were pretty scary..I was in a car accident back in 1999 and after that, I was standing getting gas in my car on afternoon and the left side of my face started to get numb and I lost my vision for just a couple of minutes and after that I would get the halo's and squigglies.  I had the MRI and nothing was ever found and that was the conclusion.  As long as I take the Topamax, I'm fine but I have ended up without my prescription a couple of times and after about three days..look out!!! Don't put me behind the wheel of a car! I usually end up with one while driving..Thats pretty scary! My husband gets migraines with the pain and I can't imagine having that..I don't do well with regular headaches rolleyes My neurologists says I'm one of the lucky ones to have a mechanism that shuts off before I get the migraine pain.
 
Has your doctor looked further into your liver issues? Were they caused by RA medications? I'm sorry you were sick. Sometimes there really isn't a straight forward answer as to why we feel crummy. I have a really low rbc count but the doctor didn't know why. I know it can be frustrating to feel crummy and not be able to pin point the cause.

CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 9/4/2008 11:57 PM (GMT -6)   
I'm in a viscious circle when it comes to all this....I was thin when it started, the meds and immobility started the weight gain. Then, a combination of acute EBV and the methotrexate caused liver and spleen issues. The doc says now that those organs were weakened, the psoriatic arthritisi has another target. More weight gain...the liver issues made it next to impossible to loose weight. The weight helps the liver issues, the liver issues help the weight....now I'm grossly overweight and having a slew of issues because of that on top of the PA problem. I thought I 'got on the ball' with dealing with my weight 3 weeks ago, but obviously not well enough...2 road trips, school starting, and an intense project and I haven't dropped a pound and don't feel a heck of a lot better yet (infact, worse in some cases - I started walking the stairs a few days a week at work and stretching daily and now I hurt....don't know if something is wrong, I pulled something, or if I'm just sore...but my joints are starting to flare as well...)
 
I feel so pathetic. Sorry to get off the thread subject.


 

Post Edited (CaMama) : 9/4/2008 11:04:19 PM (GMT-6)


elcamino
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Date Joined Sep 2005
Total Posts : 1740
   Posted 9/5/2008 8:12 AM (GMT -6)   

camama,

I'm sorry you're having such a difficult time.  From what I understand, Arava is in the same family as mtx--plaquenil, although a DMARD, is not.  If for some reason I couldn't tolerate mtx, I would probably take Arava--although my doctor looks at Arava as definitely second choice.  He told me that not as many of his patients respond as well to arava as they do to mtx.

In any case, I hope you feel better.  If it's any consolation, whenever I exercise (even mild to moderate walking) it seems like all of my joints rebel.  I usually take a tramadol right before, and that helps a bit.  I just bought a pair of rollerblades--very low impact on joints, but almost as good as running (with respect to the cardiovascular benefit).  Now, I just have to make sure I don't fall and break something :)

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 9/5/2008 10:25 AM (GMT -6)   
Yeah, I was pretty miserable on methotrexate. I can tolerate 1/2 dose of Arava pretty well and it has helped boost the plaquenil.
 
Thanks for the boost - don't hurt yourself on those rollerblades!  smilewinkgrin I need to step it up a notch, but I'm so run down again. This happens every Fall.....or it's a HUGE coincidence. A lot has been going on this past month w/a lot of work stress to boot. I wish I had a pool to go to and time to go to it!
***


 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/5/2008 11:18 AM (GMT -6)   

Camama...Bless your heart!! It's tough getting into any kind of workout routine, but add in joint issues and it's even more difficult! I'm back to the 6am weight training class and I'm so stiff I can hardly stand it sad Now without the Plaquenil, I seem to have put on some weight, so I guess it was a handy weight loss medication? That and my kidney hurts all the time, so hopefully it isn't the MTX causing that..Just do what you can, when you can!! No I just have the RA..and hopefully not rhupus like El suggested shocked My family doesn't do well with my arthritis, what a shocker that would be!

 

El..about the Tramadol, is it like Darvon? or can you take it and drive? The problem with pain meds is that I can never take them until I get home at night.  By the way, that is fantastic that you are using the rollerblades!


lupus37
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Date Joined Sep 2009
Total Posts : 1
   Posted 9/15/2009 10:40 AM (GMT -6)   
I was diagnosed with lupus in 1995. I was on the same medication for years (plaquenell-sorry spelling). I stopped taking the medication as I was having problems with my eyes. The docotor said everything was fine. I now have glaucoma from the medications. I am 47 and having some serious eye issues. If I had not gone off the medication I would be blind now. Since the medication caused the problem, a loss of structure in the back of the eye, so where the neve come into the eye, the structure has been depleated. This is a serious medication and people need to be careful. I have serious problems with my sight now, and will likely find the treatments to be of limited help.  Lupus is a terable thing to have, but then add the extra problems from the medications and you are worse off. I have also been on the prednisone for ever, I have bone loss of 10 years and a prednisone hump on my back, the size of a base ball another the size of two golf balls and another 3 inches long. They do not want to remove them, event thought they impact my ability to turn my head. The good news is that there are new treatments coming out inthe next 10 years. These will likely not help me, but I hope those who come after us can be helped. I do know people that took Plaqunell and become completely blind, so we are lucky, we caught it.
Good luck

CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 9/18/2009 11:36 AM (GMT -6)   
WOW. How much plaquenil a day were you taking? Just the standard 400 mg a day? That particular med gave you glaucoma? What types of treatments are they talking about? Will they help your sight/eyes? Why don't they want to remove the hump on your back?
 
Some of the issues I complained about last year turned out to be a secondary problem from an adverse reaction to Arava - high blood pressure, GERD, asthma (from the high BP), and so on....I still get the haze at times, usually when the GERD acts up and then that raises my BP. Also my new opthamologist did say he sees the beginnings of my lenses hardening, which is apparently why I can't read up close very well any more - why didn't the last guy tell me that when I complained? Anyway, lovely to hear right after your 39th bday. He says that is not from the plaquenil and I don't yet need reading glasses (yeah tell that to the small print I can't read anymore.)
 
 
 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/19/2009 11:50 PM (GMT -6)   
Wow, this is an old post!
 
Did you have the field vision test, especially for Plaq users when you were on it, to track your vision changes? I'm sorry to hear about your eye sight sad My testing didn't go so well, and on the second one, if I remember was starting to show deterioration from the plaq in my right eye, and that was it, no more plaq. I wasn't getting Glaucoma because I remember asking but it was something else to do with the eye, I was told that Plaquenil can't cause Glaucoma.  But then you never know, especially with these diseases such as Lupus.
 
All of these medications are toxic to a certain point, although my rheumy told me I was his first patient with eye issues, go figure!
 
 

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 1/28/2010 8:57 PM (GMT -6)   
I hope you don't mind me joining in, but on reading this site (the eye problem caught my attention) I just thought that I would relay my story.
 
I have AS and started two years ago with Humira and Mxth, then last September switched to Remicade and Mxth.
 
I was diagnosed with AS two years ago, although it is thought that I've had it for over 7 years. I had a problem with focus in my right eye about 6 months to the extent that I immediately went and had my eyes checked, on hearing the meds I was on and checking the eyes I was sent to see a specialist immediately. She did a huge amount of tests and at the end said that I had 'mucular Puckering' of my right eye and would need to have it check in 3 months time.  If it had got worse then an operation to repair it would be needed by a surgeon in Sydney. I had the check just before Christmas and it hadn't got worse, BUT she also found that I had calcuim build up on my optic nerves!!  She did more tests and showed me the results, I have to go back again in 3 months and if that hasn't improved I have to go on medication (What moresmhair ). The reason I tell this story is that I've spoken with my rheumy and he said although it can't be proved, it could certainly have something to be with the AS (if not the mixture of drugs).  It is well known that with AS you can have eye problems.
 
I firmly believe it's the drugs as the calcuim build up occured after and during the remicade infusions. But what are we to do?  We need the drugs to help us day to day and have to suffer the side effects......sad
 
Not sure this helped but an interesting subject.   No one is prepared to confirm anything with regards this subject in my opinion - neither the specialist or eye consultant.  All just 'could be's'
 
Peggy

CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 1/28/2010 9:33 PM (GMT -6)   
Wow Peggy, thanks for sharing!
 
Vision issues always scare me. What will they do for the calcium? What does it involve to get rid of that?
 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 1/29/2010 12:54 AM (GMT -6)   
Hi Camama,
 
Hopefully (ha ha) it's only medication, but to be honest I was in shellshock as everytime I've been there its something else on top of the list of things/medications I take on a day to day basis.
 
Time will see, but I have trouble focusing when I wake up, usually about half an hour before I can see straight even with my glasses on!  When I'm tired its bad too.
 
I'm used to it but it does get you down sometimes.
Peggy

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 1/29/2010 11:12 AM (GMT -6)   
Hi Peggy,
 
I'm sorry to read your post and it is true what do you do when you need some of these meds? I hated to give up the Plaquenil, but after my rhuemy found out that was it and he would no longer prescribe it.  I also take the MTX and I've taken it for so long that I'm fairly certain that it has contributed to my low red cell count/ anemia, although my rheumy says no. Even my gastroparesis under the list of causes is chemo medications as a cause, so I wonder if it is the dreaded mtx.  I'm sorry to hear about your vision troubles and sometimes it does seem that we are prone to more issues and it does make you wonder is it the autoimmune's or the medications? It is so difficult to really say!
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