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Plaquenil PSA

Started by SunshineDaydream, September 14, 2017, 08:15:49 PM

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SunshineDaydream

5 Things To Know About Antimalarials for Lupus (and Sjogren's)
By Donald E Thomas Jr | 17 November 2015

1. Many patients should take less than 400 mg qd of hydroxychloroquine.

Edited to add: See post below for more current article about dosing.

2. HCQ retinopathy is NOT rare.

We should stop saying "HCQ retinopathy is rare." I now have 12 patients in my practice who have HCQ retinopathy. Welles' study showed close to a 20% prevalence of retinopathy after 20 years of HCQ usage. We began to use HCQ universally in lupus patients in the late 1990s. So we are now just seeing the "tip of the iceberg" because this large group of patients will soon be entering their third decade of HCQ treatment.

3. Mandate a VF 10-2 plus either an SD-OCT, FAF, or mfERG from your ophthalmologists.

HCQ retinopathy can be diagnosed at early, asymptomatic stages if two screening tests are performed yearly. The American Academy of Ophthalmology recommends that a central visual field test 10-2 be performed yearly, along with either a spectral-domain optical coherence tomography (SD-OCT), fundus fluorescence (FAF), or multifocal electroretinography (mfERG) test.2 Performing only one test is not sufficiently sensitive. In my experience, many ophthalmologists do not have the necessary equipment to perform these tests. We should be diligent in ensuring our patients only see ophthalmologists who are able to perform these tests. Do not accept a consult result of "no Plaquenil toxicity." Contact the ophthalmologist to ensure the proper tests are performed. If they are not performed, send your patient elsewhere. In addition, do not be confused with similar sounding, less sensitive tests such as a VF 24-2 test, which is not adequate.

4. Rheumatologists should prescribe quinacrine more often.

Lupus dermatologists recommend the addition of quinacrine to HCQ as the treatment of choice for HCQ-resistant cutaneous lupus erythematosus (CLE).3 However, I rarely see it used by rheumatologists. Quinacrine is not only effective for the treatment of CLE, but also for lupus arthritis, fatigue, and cytopenias. It can be obtained from compounding pharmacists (for example, Village Green Apothecary in Bethesda, Maryland) and shipped to patients. Daniel Wallace's papers regarding the use of quinacrine offer excellent, practical advice for its usage.4

5. Use an antimalarial even if patient is on a strong immunosuppressant (improves remission rates).

Michelle Petri, MD and others showed the use of HCQ along with mycophenolate mofetil (MMF) in patients with lupus membranous nephritis achieved remission three times more often than those who were on MMF without HCQ.5 This clearly showed the additive effect of HCQ along with MMF. Since lupus remission (or clinical quiescence) is associated with less permanent organ damage, we should be using HCQ in all of our patients, even if they are taking a strong immunosuppressant such as MMF.

http://rheumnow.com/blog/5-things-know-about-antimalarials-lupus
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

irish

I didn't read the whole thing yet, but I have to add that I can't imagine taking plkaquenil for 20 years. I took it 5 years or so and than off for one year and now back on for about 6 months and time will tell. I have my testing done every year and it is the good in depth of the retina, etc plus some others and so far so good. I think that taking a smaller dose is fine as everyone has to do what they feel is right for their body.

It is sort of like me with tylenol, I only take one 500 mgm tab cause it helps some. If helping some makes me feel better and I can get along I feel it is better than taking 2 and stressing my liver more. Take care all. Irish

Deb 27

Thank you for this reminder, Sunshine, about dosages and best practices for testing for retinal damage. I've been on plaquenil for several years now and this year was the first time I got the specialized testing for damage.  This was a large ophthalmology practice that had the specialized equipment. I am grateful I found out about it at the Drs. office and it's important that you are posting it here. I hope people will read this and get these tests.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Kathy57

Thanks for the great information!👌  I have dropped down to 300 mg of Plaquinil daily, but I weigh less than 132 and maybe I need to drop down to 200mg?  I just want it to work the same.

Plaquinil has helped me a lot.  My pain is next to nothing and it improved my fatigue, but I still only have a limited amount of energy, and some days are better than others.

I go to a large ophthamalogical  practice but I have no idea if they are doing the right tests.  I'll have to check on that.

Kathy
66 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations, Chronic Bronchitis, Asthma, albuterol, Breztri,  Osteoporosis,

SunshineDaydream

Coming back to make a correction about dosing based on a more recent article because apparently the guidelines changed again in 2016. The pertinent part says, "Safe prescribing of hydroxychloroquine isn't difficult. One takes the lesser of the actual body weight and ideal body weight based on height. The daily dose shouldn't exceed 6.5 mg/kg/d based on the lesser of ABW and IBW."

So an overweight person would be dosed based on ideal body weight while an underweight person would be dosed based on actual body weight.

Here's a link to the Review of Opththalmolgy article from 2016: https://www.reviewofophthalmology.com/article/avoiding-the-traps-of-hydroxychloroquine-use
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Sooki

I've been taking 400mg HCQ for about 7 years now.  And 6 years on cellcept (mycophenolate) for lupus.  The combination works very well for me.  Last spring my rheumy suggested I try dropping to 200 mg HCQ to see how I felt.  Within a week or two, my joints were giving me sharp unexpected pains, something I don't normally have (any joint issues are more swelling and ashiness). So I went back to 400 mg/day.

I have my visual field test annually, but I'm not sure what additional tests my ophthalmologist does, outside of regular vision screening.  My next one is in December and I'll make sure these tests are done.  And I'll ask my doctor about quinacrine and whether that could allow me to lower my HCQ dose.

Thank you for this information!
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, doxycycline, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, D-mannose, Paleo AIP, fish oil, Cliradex wipes