Author Topic: Retinal toxicity from plaquenil use  (Read 155 times)

potatopeanut

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Retinal toxicity from plaquenil use
« on: May 13, 2018, 01:57:25 PM »
Hi all -

I've been on plaquenil for 15+ years.  This year for my annual eye visit, I had a scare with possible retinal toxicity.  My opthamologist said there was a potential abnormality and advised that I take a retinal ERG.  The retinal ERG found nothing amiss: Thank God!  However, it was enough of a scare that I'm considering tapering off of plaquenil.  More recent studies have shown apparently that plaquenil toxicity is more common than once thought.  Awhile back, doctor's were saying it's quite rare and only happens in 1% of the patient.  Now the duration of use, especially for those on it over 5-7 years have a higher risk and the incidence rate goes up to 10%. 

Has anyone tapered off of plaquenil and what have the results been? 

Joe S.

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Re: Retinal toxicity from plaquenil use
« Reply #1 on: May 13, 2018, 02:04:29 PM »
I had one dose and 6 hours later I was able to see again. So, I quit cold turkey. I found other things to help.
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potatopeanut

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Re: Retinal toxicity from plaquenil use
« Reply #2 on: May 13, 2018, 02:12:23 PM »
If you wouldn't mind sharing, what did you use instead of plaquenil.  After this scare, I stopped taking it and the first few days were OK.  By day 4, I was feeling terrible.  Now, I'm taking every other day and hoping I can wean off.

eye2dry

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Re: Retinal toxicity from plaquenil use
« Reply #3 on: May 13, 2018, 04:42:59 PM »
Did your eye dr recommend/suggest you stop it.
What did your rhuemy say, he could advise you on how to discontinue it.

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WhatYouSjo

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Re: Retinal toxicity from plaquenil use
« Reply #4 on: May 13, 2018, 09:13:08 PM »
Plaquenil toxicity varies by person, but it correlates strongly with dose and length of use. A 2014 retrospective study of 2,361 patients found the risk at 4-5 mg/kg per day to be ~2% at 5 years but ~20% at 20 years. For a 60 kg person (~132 lbs), 5 mg/kg means 300mg daily. This site has a calculator to compute your ideal dose; most people should not be taking 400 mg/day (only those > 80 kg or ~176 pounds).

Not knowing your weight or dose over those 15 years, I can't say exactly what your risk is, but it can't hurt to at least lower your dose, if not taper off. I started with the typical 400mg daily, then quickly dropped to 300mg (alternating 1 and 2 pills daily). Earlier this year I dropped to 200mg. My (and my rheumatologist's) general belief is that patients should be at the lowest dose where we see a benefit.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

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SunshineDaydream

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Re: Retinal toxicity from plaquenil use
« Reply #5 on: May 13, 2018, 09:52:26 PM »
I was diagnosed with plaquenil toxicity in 2009 after being on 400 mgs per day for 4.5 years while weighing 100 lbs. Upon diagnosis, I had to discontinue plaquenil immediately. That was the appropriate dose per guidelines at the time, but guidelines have changed at least twice since then. Per current guidelines, at 110 lbs, that dose would be 2x what I would be prescribed today if I were still eligible to take it.

The length of time you've been on plaquenil has also spanned multiple dosing guideline changes. Since you don't have plaquenil toxicity, you have the option of seeing if your dose needs to be adjusted down under current guidelines. Plaquenil stays in the system for a long time, so maybe with doctor approval you can try taking the least amount possible (one a day or every other day), see if it helps, and then increase back up to the max allowed under new guidelines if necessary.
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Carolina

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Re: Retinal toxicity from plaquenil use
« Reply #6 on: May 14, 2018, 07:02:04 AM »
I'm sorry for your recent scare, potatopeanut (interesting name!)

You might consider one of the newer biologicals (Rituximab comes to mind) and take a break from Plaquenil.

It is important for each of us to monitor our health, and our reactions to the medications we take.

It is also important to keep several guidelines in mind.

1.  Large clinical trials examine the reactions to treatment/medication of many many patients.  The treatment is considered effective if the majority of patients see some improvement and few severe side effects.

2.  The reaction of one person to any medical treatment is not a clinical trial.  I often ask others to tell me how they reacted to a treatment or drug, but really that is no guideline for my own reactions.  The only scientific approach is to examine the results of clinical trials involving thousands of patients.

3. People with Immune Disorders often do not fall within the 'normal range' of reactions to medications and treatments.  Even when a drug is released based on clinical trials involving thousands of patients, I may be outside the normal range.  This is the case for me with all opioids.

4. A medication/treatment which produces good results can stop working after years, and even (in one case for me) develop side effects or negative reactions.  This happened to me with Cymbalta, which was a miracle for me for 6 years, and then had very serious side effects in the 7th year.

5.  If I read all of the possible side effects of any medication and if I am fearful, I would never take any medication.  I know many people who refuse to take medications, including antibiotics and insulin, which they need to improve their lives.

6.  The only way to know if a medication will work for me is to try it, based on research I've done and my doctors' recommendations.

7.  Usually there is time to STOP taking a medication if it is not working or has negative side effects, before any serious damage is done.  However, one of the risks of taking a medication is that you will be among the few who are seriously affected, immediately.

8.  Natural and alternative approaches to treating the conditions of our body can be very effective.  For example sometimes weight loss and proper diet can eliminate the need for medical treatment of Type II diabetes.  On the other hand, Type I diabetes almost always has to be treated with insulin, in addition to weight control and proper diet.  An infection with e-coli must be treated aggressively with antibiotics.  Fear of chemicals and manufactured medications can be life threatening.  

Regards, Elaine

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Joe S.

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Re: Retinal toxicity from plaquenil use
« Reply #7 on: May 14, 2018, 10:55:16 AM »
I use an array of supplements. Some are listed in my signature. Acetyl-L-Carnitine and R-lipoic Acid are the main two. The first repairs cell damage and the second removes the debris from the repair.

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bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism