Sticky Blood-Hughes Syndrome Support
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Eliquis for APS treatment

My wife has recently been diagnosed with APS and HS. She has had DVTs in her right leg which was discovered during laser ablation surgery on some diseased veins. She is currently taking Eliquis and Thyroidex for the HS. Recently, she started complaining about her throat and difficulty swallowing. We are very concerned about strokes and whether Eliquis is suitable for her condition. She also needs to have dental work which may involve removing a molar.

Can anyone comment on the use of Eliquis and its effectiveness? Thanks.

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I believe some on here do take Eliquis, unfortunately I am not one. I see you have been awaiting a response from someone who does take it hopefully they will be reading your post soon and you will get a response. Wish I could help but am not sure🤔

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Hi and welcome. First of all Id like to ask what HS is? Im assuming its Hughes Syndrome? If so Hughes Syndrome and APS is one and the same. If HS is not what I think, then my next stab at a guess is Hashimotos although I have never heard of it described as HS and I also have never heard of Thyroidex - I looked it up too.

Eliquis or Apixiban is not recommended for people with APS. The only NOAC that has been tested and approved for people who have had venus clots only is rivaroxaban. Im also assuming you are in the USA by the names you call your drugs? If you can confirm that it will help us to help you better.If she does not take a NOAC then she should be on warfarin or LMW Heparin.

As for dental work. I would get her stable before contemplating this. If she is on warfarin she will need to be bridged and don't let anyone tell you it is not necessary, it is.

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Hi and thanks! Just to clarify HS is Hoshimoto Syndrome. Her doctor has recommended Thyrodex T-150 for that condition

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Of course Hashimotos, Sjogrens and APS are the big trio. So you need to be aware of that especially if someone tries to tell her she has Fibromyalgia!

Thyrodex is a natural product. Who prescribed this for her? Im not a Dr but Im not sure that I would take that for my Hashimotos.

Im on Natural Desiccated Thyroid Extract (NDT) but mine is prescribed by a Consultant Endocrinologist. I take the brand WP Thyroid by RLC Labs. Im on 2.1/4 and 2.1/2 grains alternating days. Just looking at my 2grain pot it says under ingredients 2 grains (130mg) Thyroid, which is 18mcg's of liothyronine T3 and 76mcg's of Levothyroxin T4.I find this brand by RLC very good and I have tried a few,even their Nature Thyrod which gave me the trembles! The WP is more pure with little excipients.

Please remember that people with Hashi's should have their iron (Ferritin) measured, along with B12, Vit D. If you don't have enough Ferritin then your thyroid meds won't work. Also be aware that the TSH as a measure for determining what medication levels are needed is a flawed test. You need FT3 and FT4 too as T4 has to be converted to T3 before it can become active in the cells.

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This is a great answer, lots of detail which you will find very helpful, be aware that if her ferritin is low and she gets prescribed iron, then it needs to be four hours away from any thyroid medication. I am no Nature Thyroid another NDT preparation. Also be aware that a lot of us invest in private testing as the TSH test is so poor. Maybe also get B12 and vitamin D looked at also. APsnotFab has given very clear advice here which I am merely adding to. Professor Hughes' himself regularly talks and writes about the trio of diseases - Hughes Syndrome, Sjogrens Disease and a Thyroid problem. MaryF

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Does your wife have APS?

I am on Eliquis and I have APS (triple positive).

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I did take Marevan for years, but my INR was never where it should be, and I kept having clots and hematoms. I started on Elequis 2years ago, and I am so glad I did.

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Where are you from Annegrethe

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I am from Denmark

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Cousin to Kerstin! My mom from Denmark

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Hi,

I am sorry your wife has problem to get the right anticoagulation. I think it is very wise of you and her to be worried about it as with this illness it is very important to get steady and properly anticoagulated.

I do agree with APsnotFab when she says that the only oral anticoagulant approved for HS/APS is Rivaroxaban and that one is ONLY for those with venus clots. We (like me) with both venus and arterial clots can not be on it.

I live in Sweden and there has never been suggested as I am on Warfarin since 5 years. I can take either Warfarin or LMW Heparin (the same as Fragmin). Also suggested to you by APsnotFab.

Hope you have a Doctor where you live, specialized in Autoimmun illnesses, like HS/APS, Sjögrens, Thyroidea. These 3 autoimmun illnesses often go hand in hand so therefor it is important that the Doctor you finally get, can distinguish between the different illnesses and to give the correct and best treatment!

I hope you will be happy to get the right treatment and also the right Specialist!

Good Luck from Kerstin in Stockholm

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I have Lupus/secondary APS and just recently was changed to Eloquis. I personally have terrible problems with warfarin, and was having life threatening bleeds on fondiparinux and lovenox individually. It was explained to me that eloquis has a shorter clearance, and keeps anticoagulant levels more stable, instead of the sharp increase then drop of of the other drugs. Also, my presentation was CVA's, not DVT, not for sure if that played into that decision or not.

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Thanks for your excellent explanation Tbunny1. This is how my specialist explained it to me also - that Eliquis is much more stable over the time span, while rivaroxaban spikes. She has worked with and studied with Dr Hughes, so she knows what she is doing.

All my years on warfarin, endlessly attempting to get my INR stable, and horrible migraines. I retired early due to the migraines. On Eliquis the migraines are virtually gone (after 4 1/2 months) and I am getting my life back. My feeling is that for people like us, we have to do what works to help us. I have triple positive APS with high titres, Hashi and Sjogrens.

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Hi Tofino,

Do you live in the US or England? How long time have you been on Eliquis?

Best wishes from Kerstin in Stockholm

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Hi Kerstin,

I live in the US, and I've been on Eliquis for 4 1/2 months.

Here is how I look at it. Warfarin kept me alive all those years, but Eliquis is giving me my life back.

Have a great day,

Anita

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It is a pity that you do not live in another country as it is more easy to find a Specialist and to be able to selftest which we need with this illness when put on Warfarin.

I have fantastic Specialists that help me to test every second day at home, even every day when my INR is very erratic. I want to eat a lot of greens as we feel good on those. I am tripple-positive with high titres since 2002!

Actually I believe that Warfarin, used as it should, is the best anticoagulation drug for this illness. I know that prof Hughes says how well it goes with HS/APS. Also my Hematoogist at the hospital says that Warfarin is the best drug.

So if you change to Warfarin see to it that you are selftesting and try to manage your monitoring and decide about your drugs yourself like I do.

Kerstin in Stockholm

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I really do agree with you Kerstin. I wish where I am they would allow every other day testing but I wasn't that fortunate. That way I would have been able to better balance my diet. If it can be monitored more closely the chances for success are much greater! It certainly would be less expensive.

That's why I was switched to the lovenox.

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I'm glad that is working well for you,.

Anita

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What factor does stress versus hereditary factors play in the severity of these autoimmune diseases?

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i,

I can only answer for HS/APS and we know now that this illness runs in families. It is hereditary.

As to stress we know that all forms of stress are negative to our body and to a lot of diseases and especially HS/APS. Before I was properly anticoagulated for ex when I was stressed I had more difficulties to express myself in words and then probably my INR was too low also.

Stress can not make your blood thinner (perhaps actually more sludgy) so you still are in need of an anticoagulation-drug.

Best wishes from Kerstin in Stockholm

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