Hydroxychloroquine and Primary APS

[Px123]

Hi All, I am new to this wonderful group. Diagnosed in January with triple positive APS after a large dvt. The attached link below is a recent study on use of hydroxychloroquine to reduce titers and ultimately decrease the risk of recurrent thrombosis in PAPS patients. I am currently on warfarin and stable. My doc wants to start me on hydroxychloroquine as a prophylactic, to see if we can reduce my antibody levels. Would love to hear from you as to experience with this. Thanks much!

pubmed.ncbi.nlm.nih.gov/320...

[HollyHeski Administrator]

Hi and welcome, many if us here are on Hydroxychloroquine, Hydroxychloroquine is particularly effective in helping skin rashes, fatigue, and aches and pains; it has been used to treat autoimmune desease.

I started it for treatment for my secondary sjogrens, to help modify and stabilise my immune system - now been on it for over 10 years.

It has been know for high doses and long term use may damage the retina (part of the eye). It's advisable to have an eye check with an optician once a year.

[Lure2]

Hi, I am primary APS and triplepositive with high titres. I am on Warfarin and selftest to keep a stable level of an INR of 4.0

First of all; is the Doctor who wants to give you Hydroxychloroquine and being primary APS a Specialist of these illnesses? That is exstremely important to know. We need such a Doctor.

Also do you have very high titres? Did he take the Lupus Anticoagulant test before he put you on Warfarin? I have had persistently high titres and my Specialists have not thought of reducing them but I have not a diagnose of Sjögrens or RA etc.

[jetjetjet]

Hi Px - I am also a triple - primary , on Hydroxy , warfarin sulfate and other meds for problems stemming from the APS .My inr have never been stable since the start of my lovely encounter with this disorder it can jump dangerously high to low in a weeks time . I test my PT/INR every 3 days it is so radical . Glad to hear yours are stable . I am in NH . where may I ask are you from . Sounds as Lure states you have a Doc. that has strong APS skills , always a plus to find Doc's like this . So welcome to the group ..lots of nice and knowledgeable people hear.

[Px123]

Thanks to all who have responded. Yes, I am fortunate to live near Johns Hopkins and so both my hematologist and cardiologist specializing in vascular diseases work together, and consult when necessary with others. The primary reason why we are trying this is the size and placement of my clot in December (it extended from my iliac vein to my knee) and then recently we learned, because my doctor thought to perform an ultrasound on my other leg, that I had, at some time in the past, another clot that went undetected. Combine that with the good studies, although a very small cohort indeed, regarding hydroxychloroquine reducing the high titers and risk of reclotting, we thought we would try it. But I still remain a little concerned because I have no other symptoms except clotting, but that’s a big one! You all are tremendous, and I really appreciate all of your thoughts and input. Plan going forward is to test the titers for the baseline and begin the hydroxychloroquine together and then retest several months from now to see if it made a difference. And then of course hope for no more clots!

[KellyInTexas Administrator]

Glad you are here with us Px, and a very warm welcome.

Our daughter, ( 29 today in fact, it’s her birthday today) has been diagnosed with undifferentiated Connective tissue disease - most likely lupus her doctor thinks due to low total compliments.

She was started on hydroxychloroquine, and her compliments have come back up to “low end of normal.”

So this is encouraging. It’s been right at a year now.

Keep us posted !

[Px123 in reply to KellyInTexas]

Great news for your daughter! Will definitely keep you posted. Thanks so much.

[Debayan]

Hi, Px123

Let me tell you that you are in great hands. Many doctors are in denial about the role of Hydroxychloroquine, but many studies are there to support HCQ's effectiveness. It is just simply our bad luck that no large scale trial could be conducted due to lack of sponsorship. HCQ reduces antibody titre, has minimal antithrombotic effect, reduces recurrent thrombosis risks by protecting the endothelium and also reduces associated symptoms like joint pain,headache too..

It takes a while to build up in the system, like a few months. Just member to do an eye check up as advised by your doctor and dose should not preferebly cross 5mg/kg.

[Px123]

Yes, the more I read, the more comforted and grateful for my docs do I become. The studies are small but promising and, like you, I wish there were more done. Here’s hoping!!!

[MaryF Administrator]

Hi, great that you have a clear diagnosis, I did not suit Plaquenil, due to my mix of diseases and allergies, but my daughter is doing great on it. Do make sure you specialist gets your eyes tested and evaluated before you start and also that the monitoring of your eyes is kept in place regularly. My daughter attends St Thomas' once a year to have her eyes looked at. Most of us also benefit from making sure our levels of Folate, Ferritin, D, B12 and Thyyroid are all ok, MaryF

[Px123 in reply to MaryF]

Thank you! Having read your post before on this, which was super helpful, I am good with all my other levels. Definitely made sure!! Question for you all, and in light of Debatyan’s comment about dose. I weigh about 62 kg. Doc started at 200 for a week and then wants to go to 400 daily (200 2x day) bc studies done show max protection at that level. Thoughts, comments suggestions? And eye doc is looped in. Thanks again all!!

[Hidden]

PAPs here on Warfarin, and have been on and off Hydroxycholoroquine over the years . My haematologists leaves it to me whether I want to take -- although bear in mind it takes at least 6 weeks (usually) to see an effect. I'm never quite sure if it does anything for me, and neither is he. The one thing that it may seem to help me with his fatigue: I seem to be able to go to the gym more and recover better after taking it, which translates to better tolerance for doing day to day tasks without getting too tired. Longest I've been on it is about 6 years.

[Px123 in reply to Hidden]

So helpful. May I ask what dose you have been on for those stretches? Not a big meds person but don’t want to aim too low and find I took it for nothing.

[Hidden in reply to Px123]

I was on 400 mg, but I'm big. It's often dosed according to weight. So some people might find themselves on 200 mg per day. I know my haematologist uses 400 or 200 according to the weight of the patient. My good fried is an optometrist, so he gives me a yearly eye exam checking for any possible eye concerns from taking hydroxychloroquine.

[Px123]

Got it. Thx!!

[Px123]

At the risk of stoking the flame on this one, we strongly suspect I had covid over thanksgiving - my partner and son had it too. My very healthy teenaged boy had to be hospitalized for three days (thankfully fully recovered). At the time, I was taking D3, zinc, super C, B complex and HCQ. I had the mildest of symptoms compared to my family. About 4 days of mild cold like symptoms, a little muscle ache, fatigue, weird buzzing in my lips, and then it all went away. Now I could have just gotten lucky, but ....