Damaging Effects of Antibodies

[TheKid]

I have been on Coumadin since 2003 and was diagnosed with APS (positive for both types of antibodies) formally in 2010. In 2011, I had, what I and my doctors believe was, a nasty APS flare after my INR mysteriously dropped to .9 despite being on my regular Coumadin dosage. Since that time, I feel that my health has not been the same. This is confounded by an ongoing battle with Metabolic Syndrome, which I am correctly through diet and lifestyle changes.

Anyhow, my Rheumatologist now wants me on Plaqenil. She told me that although the Coumadin thins my blood, it does nothing to address the activity of the antibodies themselves. I don't want to take any immunosuppressant drugs, and I am unclear as to what Plaqenil does and its long-term side effects.

To me, it seemed strange that my doctors have been satisfied with managing my APS with Coumadin alone since 2003, but suddenly want to add another drug. To be honest, I smelled a conflict of interest (some docs get commissions from drug companies for prescribing their drugs).

MY QUESTION IS THE FOLLOWING: DO THE APS ANTIBODIES HAVE ANY EFFECTS BEYOND THE CLOTTING ISSUE?

This is sort of in line with one of my previous questions: are antibodies always present and active or are they ever "dormant."

Do the APS antibodies do damage even when you are controlling the clotting of your blood? If so, what are they doing and how serious is their impact? I mean, we have phospholipids throughout our bodies and they are in all cell membranes. So is it possible that an APS patient on Coumadin only would be controlling the possibility of a clot happening, yet be ignoring a range of other impacts that the antibodies might be having? Thanks a ton.

[tassie]

Yes APLS can affect all sorts of things other than clotting. If you read through some of the questions and blogs here you will see a very wide range of issues that we face. APLS affects everyone differently so you may or may not get one or more of the other issues happening.

The antibodies can come and go or at least fall below detectable levels and some people here are sero-negative.

Plaquenil is a common drug given to APLS patients and can help with such things as joint pains but also has some anti-clotting activity like aspirin. You need to have regular eye checks when on it but I've been on it for 8+ years and no ill effects that i know of.

The coumadin is mainly for the clotting issues but some people like myself feel so much better when they find an INR that suits them.

APLS is such a complex disorder and can affect us in so many different ways...many of which the medical profession won't accept a link so its a tough journey.

[Nccarolina in reply to tassie]

I was having severe stomach pain that felt like a kidney stone was brewing. I went to several doctors & ruled out kidney stones, ovation cysts & anything else I had in the past. With no help from doctors, I googled ulcers & took over the counter drugs which helped some. My back has hurt for years so I went to a surgeon that found a slipped disc & other things. PT helped, but I took probioactics as suggested by my chiropractor. That helped until my back surgery. I had extensive PT & now my stomach is better with only a few sharp pains every now & then.

[paddyandlin]

I agree tassie you wrote the words right out of my mouth lol

paddy