It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board

Systemic Plaquenil Toxicity


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 06-08-2017, 06:32 AM   #1
Bryansmom
Senior Member
(female)
 
Bryansmom's Avatar
 
Join Date: Jun 2005
Location: Elk Grove
Posts: 129
Bryansmom HB User
Plaquenil Toxicity

So after taking plaquenil for 10 years for SLE and Sjogrens my latest annual eye exam shows signs of retinal toxicity. Plaquenil has worked for the most part to keep things in check. Has anyone had to stop plaquenil and if so what was the next line of treatment you were offered?

 
Reply With Quote
Sponsors Lightbulb
   
Old 06-22-2017, 07:30 AM   #2
VeeJ
Senior Veteran
(female)
 
Join Date: Feb 2004
Posts: 5,719
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Plaquenil Toxicity

Hi. I've taken Plaquenil for > 15 years; my daily dose was reduced 1.3 years in, from 400 mg to 200 mg. My rheum hasn't ever said what would happen if signs of melanin buildup were seen (meaning subject hasn't come up). Did your rheum weigh in? Since Plaquenil seems to have worked for you for some years, honestly, I'd be tempted to ask rheum if I could get a 2nd opinion on the eye findings, just so he & you can be 100% positive. Please let us know how it goes. Wishing you GOOD LUCK!

 
Reply With Quote
Old 07-08-2017, 06:01 AM   #3
VeeJ
Senior Veteran
(female)
 
Join Date: Feb 2004
Posts: 5,719
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Plaquenil Toxicity

Good morning. Did you find out anything more? Since your post, I saw my own eye specialist for my twice-yearly required field vision test. You were in my mind, so I asked how he'd know FOR SURE, if field vision results had deteriorated, that Plaquenil was the cause. Off-hand he thought there are "differential diagnoses" possible, like age-related macular degeneration, for one---but then he drew a blank on the other possible causes. So I think that would still be a reasonable question: how is it proven that Plaquenil is the cause? I wish I knew how that's determined---but I don't, sorry. I really, really hope you've learned more by now. I'm thinking of you, Vee

 
Reply With Quote
Old 07-08-2017, 07:26 AM   #4
Harri3t
Veteran
(female)
 
Join Date: Jul 2014
Posts: 474
Harri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB User
Re: Plaquenil Toxicity

Quote:
Originally Posted by VeeJ View Post
...so I asked how he'd know FOR SURE, if field vision results had deteriorated, that Plaquenil was the cause. Off-hand he thought there are "differential diagnoses" possible, like age-related macular degeneration, for one---but then he drew a blank on the other possible causes. So I think that would still be a reasonable question: how is it proven that Plaquenil is the cause? I wish I knew how that's determined---but I don't, sorry. I really, really hope you've learned more by now. I'm thinking of you, Vee
I've been on Plaquenil for a little over a year and find this an interesting question. I don't know the answer either but it seems to me that since vision deterioration caused by plaquenil is said to be irreversible, the cause doesn't really matter if symptoms present. My thinking here is that it's best to err on the safe side than to possibly make the situation worse by continuing the drug.

 
Reply With Quote
Old 07-08-2017, 07:57 AM   #5
VeeJ
Senior Veteran
(female)
 
Join Date: Feb 2004
Posts: 5,719
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Plaquenil Toxicity

HI to both. Re reversibility, I just saw an important distinction, that for Hydroxychloroquine*, "premaculopathy" is reversible but "true maculopathy" isn't. I *think* you need *additional* signs/findings beyond bilateral field vision test results to be considered in the true irreversible category. But this is way beyond me, and I'm really only suggesting that this is a good question for an eye specialist: what defines "pre" versus "true"? (*Chloroquine, an earlier generation of anti-malarial, is a different and far nastier beast, as we've probably all read.)

In an old article (6+ years), I did see mention of additional tests done if field vision results are isuggestive: OCT (Optical Coherence Tomography) and mfERG (Multi-focal Electroretinography). I also saw terms like "bi-lateral" and "bull's eye" but I'm not sure WHICH tests they apply to... So on this subject as well, I'm still thinking that I'd ask, What OTHER tests are needed to prove/disprove Hydroxychloroquine toxicity? (6 years is a long time in medicine, so new tests & reco's may have appeared since this article appeared.)

Anyhow... definitely a subject for a top-notch ophthalmologist to work thru with your rheumatologist, I think. I hope if there IS some drug impact, that it's "predamage"---which is why we all do these darned eye tests often, to catch toxicity early on. Got fingers crossed!

 
Reply With Quote
Old 07-08-2017, 08:17 AM   #6
Harri3t
Veteran
(female)
 
Join Date: Jul 2014
Posts: 474
Harri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB User
Re: Plaquenil Toxicity

Thanks, veejay. That info is also interesting and something I had not read. I know plaquenil's visual toxicity is rare but frightening to me nonetheless having a parent who went blind from an unrelated cause. Hopefully our respective rheums and opthamalogists will work in consult with each other should visual changes occur. I've read there are options to plaquenil and hopefully even more effective ones will be developed in the future should the need arise to discontinue the med.

 
Reply With Quote
Old 07-08-2017, 11:44 AM   #7
VeeJ
Senior Veteran
(female)
 
Join Date: Feb 2004
Posts: 5,719
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Plaquenil Toxicity

Harri3t, you're welcome. One of my hardcovers is pretty reassuring (see the "Resources" sticky post) for those who have the required eye tests every 6 months, have normal kidney function, and take <5 mg/kg of weight daily for less than 10 years. For those folks, author says risk of *permanent* damage is less than 1 in 100,000.

I've taken it 17 years. I have the required tests religiously AND my rheum cut me to a maintenance dose 1-1/3 years in---but there you go, it's well over 10 years for me, so I wonder too just a bit... BUT I sure don't like the alternative, steroids. (My current symptoms wouldn't begin to warrant immune suppressants, I think.)

My parents both had major eye issues in old age, so I worry about their issues too. But I think it could help you to read one of the hardcovers yourself. Most libraries do have those main ones, and you could take a peek for free. I hope you're doing well overall! Bye, Vee

 
Reply With Quote
Old 07-09-2017, 06:06 AM   #8
Harri3t
Veteran
(female)
 
Join Date: Jul 2014
Posts: 474
Harri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB UserHarri3t HB User
Re: Plaquenil Toxicity

Thanks Again, VeeJ. I will have a look at the Resources list. Good health to you as well

Last edited by Harri3t; 07-09-2017 at 06:06 AM.

 
Reply With Quote
Reply Reply




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:05 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!