Sticky Blood-Hughes Syndrome Support
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APS - Triple Positive High levels

Hi everyone! Im new here, posting... not so new reading as i have been reading everyones posts since last week.

Im Ana, 32 yold, 10 month old baby.

Just like most of you, ive suffered a lot until i got diagnosed last week. From hipocondriac, to "depressed after a baby", to "concerned with my looks" ive heard it all. And payed a lot of money to hear that lol but God put the right Doctor on my path, right when ischemia started on my fingers and almost lost them... i cant be too long today (brain fog), but ill keep posting and telling more. Its so good to know you guys are here, because i felt so lonelly for so long... count on me too! I hope i can help in some ways ill let you know.. i always believe theres emotion and nutrition connected with auto imune diseases and other diseases as well... and i want to experiment that route and not just "make your blood really thin and it will go away". I know i need INR, but... i believe theres more in all this process. But before i can go into all that, theres some things i have to address first, and that i wanted to ask you about, if you could please help me:

- skin leasions: i have livedo but also other purple roundish lesions that are not there in the morning and start showing when i get up. Anyone have these? Do they ever go away?

- pins and needles underneath the nail on fingers... does this go away?

-Obstetric: my doctor wanted me to have Mirena inserted end of th month, so that i dont have my period anymore and so that j dont bleed anymore. Well... besides feeling really counter nature... i understand the risk of bleeding but reading into Mirena and its side effects i really dont want to have that put in and out a month later because i gained a million pounds (like most women do). I wanted to try the progestin only mini-pill first, as i can stop taking it easier if it doesnt work, than to rip something of my uterus... anyone can help me with this please? What are your experiences?

-Hair removal: being told i cant shave anymore (which is a nightmare bcause im a monkey lololol -im portuguese... dont tell me i cant shave!!- ), and waxing is a nightmare because i suffer a lot and two days later hair is growing again... i wanted to carry on with laser hair removal. Can i? Have any of you ladies dealt with this problem? Thank you

- now as for medication, i take warfarin and just started Plaquenil today. Do you take Plaquenil? My doctor says my symptoms will go away now, to give it time and ill be alright. Is it true? Do you ever feel like your old self again with warfarin and plaquinol? Does my skin ever will go back to normal?

- and how do you do when you have to go to the dentist or something? What if you want botox once in a while? Im sorry, i was just dying and now im asking these questions but the last thing i needed was to lose my husband as well.. and despite him saying no to please me, i know looks also count for him and i wanted to know if i could do this things once in a while or not. Stupid, i know...

-Supplements and diet: i was taking Vit D, Magnesium and Vit C and a Probiotic. My doctor that hates supplements told me to stop everything. But when my brain was sl bad yesterday i took magnesium and felt so much better. I wanted to know your thoughts on Supplements and how to eat.

-Exercise: what exercise do you do? Anyone lifts weights? If not, what kind of exercise do you do?

- "angry woman disease" - i read somewhere else that APS espiritually is connected to people who have ressentment and are angry but not let things out. I dont know if i believe it, but in my case, i actually spent 3 years not letting anger out and suffering in silence, pretending to be okay. Anyone relates to this? Just curiosity.

Thank you all**** a big hug to everyone and please Count On Me! *

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Hi there, I did send you a private message, regarding the medical centre in Portugal named after Professor Graham Hughes! MaryF

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Dear MaryF, thank You So much! Just read it an started researching. Thats such good news! Regarding the other questions here, can you help with any please? You seem to know so much about our disease.Thank you loads*****

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Hi there, it is crucial that you find a specialist who fully understands your condition - Hughes Syndrome/APS. It is good to always check and maintain good levels of B12, D and Iron and also to make sure your Thyroid is working properly. That centre in Portugal would be the right direction for you.

Regarding supplements some are fine, but again it is crucial that you are aware that supplements can alter you INR, so best to approach these issues carefully. I also take probitics, Vit C etc an Magnesium, and vitamin D in the Autumn and winter months or if it is not sunny.

Your skin is more likely to be better with the Warfarin and Plaquenil. The Mirena Coil is recommended for Hughes Syndrome/APS patients. I have never heard not being allowed to shave...

Regarding eating, you have to eat according to the Warfarin and there are some useful books around, Eat on Warfarin by Cath Atkin is a good start, however not perhaps in your own language yet.

Exercise, I try and do an hour a day, this is a mixture of walking, cycling, and also various machines I have around my house.

MaryF

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Hi and welcome to our friendly site!

I wonder if you have tested positive to any of the antibodies (they are three) and if your Doctor is specialized in HS/APS? Have you been on Warfarin for a long period of time and what therapeutic INR-value are you put on?

As to your questions; I only take the drugs my Specialist tells me and as I am on Warfarin (I am triple-positive and selftest) I have to be careful with what I put in my mouth so I try to stick to the same amount of everything and not change drugs etc.One glass of wine for dinner but not more. I am more than double your age and I live in Stockholm.

I take walks for at least half an hour every day and do exercises (good for my back) on a carpet at home and also go to gym with a group every week in winter.

Hope you will stay with us so hope to hear from you later.

Best wishes from Kerstin in Stockholm

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Hi there Ana!

I think you are Lucky to be in Portugal, as you have a specialty center there. ( and congratulations on your new baby!)

You are adjusting to many new things things- major big things in your life right now. A little overwhelming!

I don't know about laser hair removal. You can ask at the new clinic- At least you have beautiful olive skin! ( helps hide the livido. ) I shave also- I'm just extra careful. I'm pretty much a monkey girl, too! Just shave for now and be careful.

As far as vitamins- really our administrators are excellent with this. Same goes for birth control council.

I think you will find warfarin has very little side effects, as far as how it makes you feel. I think you are actually going to feel so much better on it! ( I can be a little gassy... if I'm honest...that's all. Blame it on the dog!) plaquinil can be a little more difficult- but that's just me. I take the titration ante slowly. I do 50 mg at a time - 2-3 weeks per titration. But that's not the norm. So I take smaller doses for my titrations up and do them a little longer.

As far as your relationship with your husband- I'm glad you bring this up. This disease affects women statistically way more than men- and yet we never mention this intimate aspect and it's a very important part of our emotional and spiritual well being within the marriage. If I had to guess, I'd say most women here have dealt with hiccups in this area from time to time whether its physical , emotional, or more likely, a combination of the two. Sometimes things will be fine, but sometimes not- depending on flares, or if your organs are doing ok, ( clots) or if your veins are clotting, as you already know what this feels like because of your hands.

Let's not forget about our husbands. This is not emotionally easy for them, either. I know there are times my poor husband is quite certain if he looks at me the wrong way, I might break! He's having a very difficult time with this emotionally and physically with me. He has mentioned to me that he feels a little emotionally disconnected within our marriage right now because of this issue. He has a very vested interest in getting me better and keeping my INR high enough and stable! ( haha!)

So just talk about it together.

Ana, glad you landed here. Our daughter was just in Portugal last month for a conference in Lisbon. She said it was beautiful. She visited the old royal palace by the sea with the wall... and the old cathedral that was damaged by the volcano that's open to the sky.

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I'm not sure I have much to add to the excellent responses above.

I have three -yes three -hair follicles on my chin that grow very quickly. Every morning I must take a small disposable razor and trim those three follicles back. What's interesting is where they came from – the first follicle began to grow after the birth of my first child; the second one after the birth of my second child. And the third one? With menopause. Bizarre.

Although I have read from many sources that there is a link between systemic inflammation and autoimmunity I have never read of our disease being labeled "angry woman syndrome." The bio chemistry of how all of our hormones interact with each other is quite complex. And emotional stress does affect those complex interactions in a negative way.

But to attribute our disease to primarily stress or repressed emotions is not at all accurate or helpful. The origins of our disease are still unclear, but the highest statistical relationships I have read are with a family history of autoimmunity, such as lupus, and exposure to the Epstein-Barr virus. So no do not think you brought this on yourself. Like me, you may have just been walking down the street at the wrong time when someone ahead of you exhaled some of their Epstein-Barr viruses which you then inhaled.

In other words - bad luck.

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Exactly, Gina! I might add the following to the "angry woman syndrome":

The only time I wold feel angry, if I were you, Ana, is when leaving one of those Dr appointments having just been called a hypercondriac, being told it's the baby blues, or that you're just soulfully shallow enough to think your illness is about your appearance.

Yeah. That's enough to make any woman angry for the short haul! ( nothing at all to do with APS. ) Unfortunately this is a common story for many women.

The good news is these days are behind you!

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I must say as I have been on this site for several years now that I have never heard of "angry woman syndrome". it is not possible to speak of something that does not hardly excist.

Here in Sweden they talk of "Fibromyalgia" that way though. Everything people can not put a label on they say is probably Fibromyalgia. I feel so sorry for people who has not a diagnose.

Not a wonder if you are not understood by the Doctors and look healthy like a fresh rose nobody can guess you have a lifethreatening illness. Difficulties.............yes.

Kerstin

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I have never been diagnosed with fibromyalgia, but one doctor – whose practice I left a few years ago – at first suspected I had fibromyalgia. Then he went on to explain that he had attended a workshop in San Francisco where the presenter had documented statistical relationships between people with fibromyalgia who also had 1st° relative with mental illness. The presenter than concluded that fibromyalgia was caused by stress.

I tried not to sound or look angry ( I have a friend who was diagnosed with fibromyalgia ) as I pointed out that this correlation of "A leads to B" was not necessarily correct. I pointed out that many mental illnesses are the result of a defect in the autonomic nervous system. Autoimmunity might also be linked to a defect in the autonomic nervous system. Therefore it is not a definite conclusion and it should not be presented that people with fibromyalgia have somehow made them selves sick, or become sick, because of stress. The root cause of both illnesses may lie in a common genetic error so that "Gene A causes both B and C" and the affected patients can not control which hormone sequence works and which doesn't. I suggested to him that similarly, you should not blame people for bone fractures due to osteopenia for not doing enough exercise when many osteopenia patients actually have a defect in there gastrointestinal system which makes it impossible for them to properly absorb calcium.

I was angry because he was clearly implying that my autoimmune conditions were somehow a result of my behavior. Grrrrr. ( does that translate into Swedish? It's supposed to represent the sound of a dog's growl.)

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Hi Gina,

Well said! Also well articulated GRRRRR exactly like in Sweden!

Kerstin

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