Plavix & Plaquinil

[TouchofFrost]

Anyone using just Plavix and Plaquinil to manage their APS? Just curious.

I can not deal with Warfarin. I have tried it for 4 months and my INR has not once been in range once not even close (whether it's been weekly testing, twice a week testing - now they've put me to once every 2 weeks because my arms are a mess from the bloods.)sorry I'm ranting. I have tried weighing the greens I eat and eating them at the same time every day (as inconvenient as that is) and it's still high. When it's up high I feel so lightheaded and weird. I have never had a heavy period in my life up until now, but I constantly bleed through my clothing despite what should be adequate protection and very frequent changes. My OB says it's the warfarin. The last straw is now my hair is coming out! Just got all my results back for sjogrens/thyroid/celiac/lymphoma/multiple myeloma/arthritis etc and nothing, all normal. I know this drug works for so many, I wanted it to work for me: but I'm at the point where I think surely the stress is worse for me than trying something else?

I guess I am scared of making the jump.

I had my confirmation test and although my numbers are still somewhat strong positives for ACLs ( IgG & Iga) they are half what they were and I am still negative for LAC. I thought I had seen someone posted that they were on these but now I can't find the post.

[Ozchick]

I persevered for 6 months on Warfarin-from crazy highs to mad lows. Went on Clexane and then though all my dreams had come true when Xarelto came on the scene until not recommended for triple +ve APS. Did experience a few weird symptoms on this but have now changed back to 100mg Aspirin + CLexane twice daily. Feel pretty good on this combo except noe that the weather is getting cooler here my Raynauds is playing up. Seeing my haematologist today but more for 6 month checkup than a specific problem and check all bools in range,

[TouchofFrost in reply to Ozchick]

Thanks, Oz.I hope your Raynaud's isn't too awful. How cold does it get in Oz? We live near the Rocky Mountains in CO and a few weeks back it was negative 30. Our poor dog who loves the snow couldn't even go outside.

[HollyHeski Administrator]

Hi, I'm triple positive and also can't take warfarin, so I am on daily clexane, clopidogrel, and aspirin.Many times, we gave to trial at the beginning to find what's suitable for us, not one drug us suitable for all.

I think the key is to have an APS specialist working with you?

[TouchofFrost in reply to HollyHeski]

I agree totally. I am under Jill Schofield - Center for Multi System Disease, in Denver. She has worked with Dr Hughes and co-authored papers with him.

[Tofino5 in reply to TouchofFrost]

She is the best.

[Jumper99]

As warfarin is not stable then they could give you one of the newer anticoagulants called DOACs. They try warfarin because it’s better at protecting us from further clots but that doesn’t mean you don’t get some protection from clotting from the newer Anticoags. It doesn’t have to mean that you just have clopidogrel and hydroxychloroquine to rely on. Ask your consultant to change you to one of these. Your loss of hair may be from taking hydroxychloroquine as it does affect some people like this.

Your blood test results being lower before does not necessarily mean that your clotting risk is lower. X

[TouchofFrost in reply to Jumper99]

Thank Jumper, I did understand that about the numbers. I haven't taken the Plaquenil yet so it is likely the Warfarin.

[Tofino5]

I’m triple positive as well, have had DVT and PEs, and after a very, very long time with very erratic INRs, was changed to apixiban. (Come to find out the warfarin was making my migraines excruciating.) Also, I am unable to take plavix or plaquenil due to side effects. This was a good change for me-fewer migraines, no clots, easy and healthy diet.

[MaryF Administrator]

Hi, there are alternatives, many on here, despite their very best efforts can't maintain a steady and safe INR, and end up with injections etc in order to help with that, you really must have a consultant who fully understands this condition. MaryF

[TouchofFrost in reply to MaryF]

Thanks Mary. I was pretty emotional yesterday and it is nice to have somewhere non judgemental to go. Especially as this is all new. I really appreciate this site. It was actually an APS specialist that recommended the above combo. So we'll see. We are likely moving back to the UK next year, perhaps I'll get to meet with someone on Dr Hughes team?

[MaryF Administrator in reply to TouchofFrost]

There are lots of specialists listed on here: ghicworld.org/ Thanks for the feedback, hoping your move goes well. MaryF

[Lure2]

The CoaguChec xs from Roche and being triple-positive is not easy to manage. My hospital in Stockholm use another machine and suddenly no difficulties with difference between fingerprick and vein-results.

Also test rather often makes it easier to handle the INR.

[TouchofFrost in reply to Lure2]

Thanks Lure. I think it would be better to self check but anticoag clinics in the US don't like you doing that. At least where I am. We are likely going to move back to the UK next year so perhaps I can give it another try then, but for now I just want off.

[terrim in reply to TouchofFrost]

Self testing isn’t very popular in the UK I’m afraid. It took 6 months for me to adjust to warfarin - here in the UK I was started on a high dose which was gradually reduced over time. I had joint pain and hair loss but after 6 months things improved. Warfarin is not for everyone and some require a higher dose than others depending on their Vit K intake. I’m pretty stable now and am only tested every 10 weeks for my INR levels. However every time I have to come off for a short period e.g. for treatment in hospital I find I have to take a higher dose when I go back on warfarin and this tends to remain the case. Hope you get sorted.

[Wx_Doc]

To set the record straight I am not a physician. I am a Ph.D., but not in the health sciences. I am 81 years old and have used both plavix and Eliquis at different times. I did not like the bleeding episodes I experienced with these medicines and a year or more ago I stopped taking Eliquis which had been prescribed as the replacement for plavix outside my Cardiologist's approval. What I take now is a shot of whiskey each day around 4 p.m. If you look up the benefits of this approach I believe you will be surprised. But just one shot. Remember that all medicines are to some degree poisonous to one's body. And lest I forget, I am also a Christian and believe very powerfully in the power of prayer. I authored "Pray Believing", a testament to my faith in this approach. So it's prayer and whiskey - either Jack Daniels or Jameson Irish Whiskeys!

[KellyInTexas Administrator in reply to Wx_Doc]

I see that you do not have a diagnosis of APS. Has that changed, Wx_Doc?

If it has not changed, please understand that APS is an autoimmune disease that is managed very differently than mechanical A-Fib.

The reasons are vast, varied, and complex.

We are not advised by any APS specialists to substitute alcohol for proper anti platelet or anticoagulant therapies.

This would be considered dangerous advice for the vast majority of us, and I would hope that you would be respectful of this.

I encourage you to seek out a forum suitable for A-fib patients.

I’m very glad you are doing well, and Easter blessings to you.

Take care,

Kelly

[luisal]

Hi TouchofFrost,

Warfarin was a very bad idea for my stomach. Before Eliquis, which I´ve been using recently, I´ve tried Acenocumarol a blood thinner similar to Warfarin. Of course you have to consult your doctor before taking it. Good luck on the journey.

[Dot69]

I’ve been on warfarin for over 5 years ive never been offered anything else Yes I fluctuate with myINR and have had bouts of nowhere near where I should be, I feel much better after my INR was raised which I told my consultant who I only see once a year now. I go for blood tests approximately every 3 weeks if it’s stable they might leave me 4 weeks but if it’s not ‘behaving ‘ it could be 2 weeks. I’m conscious of my diet so don’t know why it changes and I do feel different so do know ‘things’ are happening inside and know my INR is not going to be in range

[Saltydogs]

I also had issues with keeping my INR in range. It got to the point that I wS sick all the time. I finally convinced my hemotologist to put me on Lovonox (enoxaproxin). Been several years now and I have to say its been a non-issue. Perhaps Warrington doesn't work for you 🤔?

[Thick_Blood]

I am the one who posted and said I have an Immunoglobulin G deficiency. All my IGG subclasses are well below the norms and i tired I for months and my INR would never stabilize and in fact i had clots while on Warfarin. I could eat exactly the same thing day after day and i would vary wildly. My doctor wont prescribe Plavix due to the lack of studies showing effectiveness with CAPS patients. So i am on Plaquenil and Lovonox (enoxaproxin sodium ). I have been every day for 16 years. Small price to pay to have an impactful life and be able to care for others.

[TouchofFrost in reply to Thick_Blood]

What a beautiful sentiment. Thank you for responding. So lovely to hear. I think we are settling on Eliquis. I am waiting for insurance approval 😀 The hematologist referred to me as 'Wafarin intolerant'.

[Wittycjt in reply to TouchofFrost]

So is it eliquis then? Even though stroke history? How is your Xa blood test?

[TouchofFrost in reply to Wittycjt]

Hi Witty. Yes, I have been on the Eliquis for about 4 months now, so far so good. That was the chosen med despite stroke history as I was told that it works well for those without APS that have had a stroke and based on my age, fitness level and other medical findings, they feel this is safe. I love how easy it is. I do still take the aspirin. I just have to watch to be sure I don't actually get any APS symptoms but, currently I remain asymptomatic.I don't believe (after re-reading all my test results for the 100th time I ever had a Xa test, unless it is called something else?

Just to update further: Those in the 'know' believe my stroke was likely medication-induced, coupled with Factor V Leiden (clotting mutation) and only *possibly* the higher ACL levels, although the jury is out on that?? My specialist believes I have breast implant illness (BII) from silicone implants and therefore A.S.I.A syndrome (Autoimmune/Inflamatory Syndrome caused by Adjuvents) which they believe has caused the elevated ACLs as my body fights against the foreign objects - implants have also been known to cause strokes in rare cases too, so who knows? I am singular, barely positive(indeterminate) now and both the specialist and haemo believe I will likely become negative after I get this nasty junk removed although that remains to be seen, and I shall not be holding my breath. Unfortunately/Fortunately, I will remain on thinners indefintely - well, at least until I test negative every 6 mths for at least 2-3 years although the testing will continue for life or until a finite cure, is what I was told. You know as well as I do things always change both personally as well as medical advancements, so I guess we shall see?

[Wittycjt]

Good luck, thanks for responding