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Hughes Syndrome - APS Support

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APS + supplements?

charlotte_g
charlotte_g

I am recently diagnosed with lupus and triple positive APS, I am 18 years old and have been told I will be on blood thinners for the rest of my life. I want my life to be so much more than the restrictions I am facing right now so I am looking for any help or advise on what I can do to help improve my situation/ health. Any recommended supplements I could look into would be greatly appreciated. Thank you for taking the time to read.

28 Replies

Hello Charlotte,

First of all, I wish you are doing just fine these days.

I am APS triple positive (primary, not SLE associated) as well.

My best piece of advice would be that you understand how your body gets used to Warfarin (I am assuming that you were put on this medication) in order for you to be in range the most of the time.

The best way to do this is to be able to self-test and compare/match venous and capilar results every other day at home. I recommend you try microINR machine (iLine microsystems)

Mastering the anticoagulation therapy, is the best way you can avoid bad consequences of our condition.

Greetings from Chile!

Ignacio

Hi Ignacio! I hope you are well! Yes I am on warfarin. Thank you very much, i will have a look into the microINR machine. My IRN is all over the place at the moment so I’m sure it’s worth considering. Best Wishes, Charlotte

Hi Charlotte, although I’m older than you, I think I understand what you are feeling. I was diagnosed with APS last summer, I was devestated. I have a high profile and risky job and I wasn’t sure if my employer would let me continue. This really hit me hard as my job is a huge part of my life.

I talked through the risks and issues with my consultant and got them onside, then went through the same issues with my employers occupational health department. I explained the impact it would have on me to be stopped from doing my job and that this would be greater than the impact of the diagnosis. It took some agonising, but I’m now back doing the job I love. I and they had to accept that perhaps my risks are higher than for others, but I took an informed decision about the life I want.

I self test, and report to the Anticoag clinic by email = they’ve been great and really flexible. I actually found the warfarin less constraining than it’s reputation. So I think my message is decide what you want to do and what level of risk you are prepared to accept, don’t let the diagnosis define you, especially if you are essentially feeling OK.

Good luck

charlotte_g
charlotte_g in reply to GillyA

Hi GillyA,

Thank you for sharing your story with me. I’m so glad that you have managed to make it back to the job you love! Gives me a lot of hope that I too can take an informed decision about the life I want as well.

For the moment I am back to the hospital every 4-7 days to get my INR tested, it’s been very all over the place, so would be interesting to know if I can do the self test. Thank you for your advice!

Best, Charlotte.

HollyHeski
HollyHeskiAdministrator

Hi and welcome, I'm presuming you have been unwell to lead you to this diagnoses so young, it may seem daunting now but as you learn more about your body and condition you will find a new good way of living.With the right anticoageration for you, and I say this this way as to begin with it can be trial and error to get the right course for our unique bodies. You will feel healthier and can live a new 'normal' life.

I'm hoping you have a APS specialist that will work with you?

Your question re supplements is a good question but a vast answer, as so many can contra your medication.

Once you find your way you will see having the diagnoses is actually less restrictive than you think now.

Hi HollyHeski,

thank you. Yes I had a huge lupus flare causing critical haemolytic anaemia and APS causing a blood clot on my brain. That is really encouraging to hear I will be able to live a new normal life! Yes I have a great anticoag specialist who is working with me to keep my IRN in a 2-3 range.

That’s very good to know, one of my main concerns is how restricted I feel out of fear I will cut myself somehow and bleed out because they want my blood to be so thin, meaning I can’t take part in so many of my favourite activities. I guess at the beginning of the diagnosis it feels like you’ve lost everything, but I can understand how I will see that it is less restrictive than I think now.

Thank you very much!

Best,

Charlotte

Hi a Charlotte

I felt very similar to you when I was diagnosed. I was initially diagnosed with APS and put on warfarin for life. I’m not ashamed to admit that the first time I went to the warfarin clinic (although they where lovely and explained everything) I came out and cried! And when I got the warfarin tablets I put them on the side in my kitchen and everytime I walked past them I gave them a dirty look hahaha. It was clearly my process of grieving what was and accepting what is.

I have been to totally fine and live a normal life now I am in a routine I fill up a days of the week tablet box on a Sunday and leave it next to the kettle so I remember each morning to take them and I also use the App Medisafe to give me a daily alarm to remind me to take them and when i’m running low it reminds me to reorder.

I eat a lot of vegetables and told the warfarin clinic that on my first visit and they said it’s fine keep your healthy diet (i do eat some unhealthy too but I do enjoy healthy food for main meals most of the time) and they prescribe my dose around my diet. At first I had to go to the clinic quite often but once my INR was pretty settled I only go every 6-8 weeks and i’m there minutes so it’s not too inconvenient.

Re supplements you sound like you have a positive attitude which will get you far with your health so don’t lose that and if you need to along the way ask for counselling to come to terms with things. Work with your doctors and ask what supplements are best but I believe a good diet most of the time and loads of walking genuinely helps me stay well.

Just to add I also was diagnosed with Lupus SLE a few years later and now take Hydroxychloroquine for that but I had the same process when diagnosed as last time. I resisted the tablets at first and waited until I spoke to my consultant again so I was sure it was the right thing for me. He was great and understood my reservations and I accepted it was time to try them and I added them to my morning routine and all good so far.

If you ever need to talk please come back on here and ask away someone will help you I’m sure.

Personally now I have accepted my diagnosis I feel grateful I know as in my opinion it’s only dangerous when we don’t know if that makes sense so now I’m on warfarin I’m much safer and I actually forget I have APS most of the time if that makes sense.

Take care

Hi Bobbydoodle,

Thank you very much for sharing this. Yes I agree it was very overwhelming experience but I’m certainly already adjusting to it a bit so I feel a lot better now. Your grieving process sounds somewhat more healthy than mine 😂, when I was diagnosed I didn’t really process it at all, it was all very confusing but after it was properly explained to me and I slowly fully began to understand I was very frustrated and scared.

That sounds like a great app, definitely one of my other problems is remembering to take them at the same time each day, as well as only realising I’m very low on them when there’s about 2 days left 😂, meaning we have to put through a bit of a panic order to the pharmacist - I don’t think he likes me much... haha. I also eat a lot of vegetables, but not very consistently I would say (one week I have a tonne, the next I don’t), which I think has been quite a problem for stabilising my IRN.

Yes I try to be positive for that exact reason, I think my mum read somewhere that people who have hope that meds are working or that they could one day get better often do better in terms of their health . I’m pretty optimistic that I’m going to find ways to make it more manageable and all these responses have given me some great advice of what to look into next to make it just that little bit easier.

That’s great that the doctor understood and respected your reservations.

Thank you so much! Yes this has already proved to be so helpful so I’m sure I’ll be back on here with other questions.

I very much understand that, when the doctors told me I had the blood clot on my brain, my mum cried, but I was totally fine because I had been experiencing extreme pain and headaches and finally we knew what it was and that I wasn’t making it up. Much better to know!

Many thanks,

Best, wishes,

Charlotte

Hi. Getting a diagnosis is hard. For me, I finally had one answer. When I 1st took my warfarin, it was scary. Now I feel very comfortable. I live in Minnesota and go in for blood draws. My INR is usually stable. When I add new supplements, I get checked more frequently until I know how my body reacts.I see a naturalpathic doctor. I had a food intolerance test and hair analysis, to figure out diet and supplements. It has been the best thing I have done. I stay busy, very active and don’t let my challenges over take my life.

I have 3 biological children and 4 adopted. Only 3 at home still. Life has been blessed even with bumps in the road .

charlotte_g
charlotte_g in reply to 25pooky

Hi 25pooky!

Incredible, I’m very interested in looking at the natural side of things as well as my mum is a nutritional therapist. I’m glad to hear it’s been so helpful for you. When things are a bit safer with the pandemic, I’m planning to head to the US to get some help with my health whilst being monitored properly as well.

Wonderful to hear about all your children. Thank you for sharing!

All the best,

Charlotte

Hi Charlotte - I so sorry you have started this so young but once you can get stable with the iNR it can be manageable . I am way at the other end other end of this thing we call life .A male 66 years young . i started with the Dia. of APS triple pos. prim. with very many other med issues . Your INR is unstable and with that i could be the poster child. My INR is tested twice week it is so erratic. I do the blood lab drawn in the mornings .I am so radical that on my Tues. Draw 2.4 and then Fri 9.2 This does not happen often BUT 5 to 6's are common . My range for my Warfarin Sulfate is 2.5 to 3.5 . we try to keep me on the higher end because I am a clotter not a bleeder at all . Saying that when i bridge for procedures they thin me right down . I was dia in 2009 although I think I was having issues with it 2 years back. Keeping the same manufacturer of your Warfarin was a big step for me as the active ingredients are ok BUT the inert ingredients would cause some of my INR to go off. I am also many other meds so the chances of other reactions with me also high . I also don;t eat anything with Vit K . I do take supplements for this . My diet has been cut down so i don't have a lot of choices which is ok with me . when asked on paperwork for new doc's they ask what i can't eat - My reply is let me list what i can eat MUCH smaller list. so diet - consistency with your meds. is a big things . I really am sorry for you as such a young woman . Females having such a hard time with this. So I hope this helps I am here in COLD NH if you need or want to ask anything I may be able to help you with . I am sure there is more in this cobwebbed mind of mine and i will get back as they surface Ha . Best to you . Where do you live ?? I ask as temperature extremes we have noticed can effect me . here we get our share. robert frost wrote - If you don't like the weather in New England wait a minute ! Jim

Hi Jim,

Wow! What a significant change between the days, mine is often much lower and less radical, but has been a concern at some points.

Yes I have very much struggled with eating the same consistently and will have to work on that I’m sure. Thank you, it was definitely a big shock and very life changing but I feel like I’m already taking much better care of myself and leading a much happier life so perhaps a blessing of sorts.

Thank you very much for your support and advice. I live in London, England - very interesting to know that temperature could affect us as well. I’m hoping to try and keep a bit of a diary of what happens during days, what I eat and how my symptoms and IRN changes. I really appreciate you taking the time to write to me and share your experiences!

All the best,

Charlotte

I was diagnosed with aps some 20+ years ago remember when the haematologist thought I should be on warfarin I was very reluctant he then said well if it was my wife I’d want her on warfarin so thought better take it then.

My INR can be erratic especially if there’s a change in meds or food I go through periods of not eating much but that’s due to a different illness.

Consistency is the key with warfarin, same amount of fruit veg etc every week, for example I always have broccoli on a Sunday.

As for activities I’ve found that most things were ok as long as your careful, and wear any protective clothing you need. It certainly didn’t stop me from sailing, travelling and all sorts of other activities. I did give up horse riding had a nasty accident and thought it was too much of a risk after that. I can be reckless!!

I self test and phone the results to the anti coag clinic. It depends what area of the country you’re in as to wether you can get the strips on prescription they are expensive and not every warfarin clinic accepts the results.

Feel free to pm me at any time it’s a strange world and stressful at times

Love and hugs

Jude

charlotte_g
charlotte_g in reply to judes

Hi Jude,

Thank you so much for your insights into APS and warfarin. It gives me so much hope that you have been able to continue to do all those activities!

I’m definitely trying to eat consistently as lots of people have said that has been very helpful for them in keeping their INR steady. Sounds like a good idea to specifically eat certain foods on certain days to make sure you are getting more of a consistent diet because I find that I forget how much I ate the week before and accidentally eat more or less.

I’m in the Uk, so would have to have a look and see if the self tests are available for me.

Thank you very much for all your advise and support!

All the best,

Charlotte

Hi Charlotte, I also cried when I was told I would be on warfarin the rest of my life. And I’m 46! :) it’s ok. It is a big adjustment but you will get used to it. I held off getting a pill case. I guess my pride got in the way but the case has helped me so much and was the right thing to do. I have an alarm on my phone that goes off every evening as a reminder. That also helps. I have been on warfarin about 6 months. The holidays made my numbers go crazy because I did not eat well and went overboard on the sweets. So yes, diet and consistency is really important, however i struggle with the consistency part. I hate feeling restricted but I’m working on it. I’m glad they figured out what was going on for you. I struggled with so many migraines and was always taking off work. The headaches were awful. But since taking warfarin, no more migraines. Woo hoo!!

Hang in there and I’m glad you are on the mend. This website has been a great place to chat with others and to learn. ❤️

Amy

Hi Amy,

Yes it is a life altering diagnoses at any age I’m sure! Luckily I have a pill case for all of my lupus meds so I have just recently started putting my warfarin in there which has seemed to help me not to forget it. The alarm sounds like a great idea!

For the moment, they are telling me I can eat whatever I want (within reason) because they assume I will be testing weekly for the rest of my life, but I’m hoping it will become less frequent.

Yes, my headaches were one of the big things that sent me into hospital, I had a clot on my brain, which I always assumed was the cause of the headache but lots of people have mentioned having migraines with APS, so maybe it was that. I also haven’t had any headaches since taking blood thinners - so that is definitely a huge bonus!

Thank you so much, yes it’s been super helpful already and I’m excited to learn even more.

Best,

Charlotte

lupus-support1
lupus-support1Administrator

Hi Charlotte!

It's a lot to take in!

Would you please confirm whether you are talking about the lupus anticoagulant test, which is a complicated test for clotting.

The Lupus Anti-Coagulation Test is very confusing for patients and doctors because it is NOT a test for SLE!

There isn't a single "blood test" to diagnose systemic lupus erythematosus or SLE. Some 25% of patients with SLE also have the antiphospholipid antibody (Hughes) syndrome ie APS.

With good wishes,

Ros

Hi Ros,

I think I was talking about the self-test for the INR.

I’m not entirely sure what the Lupus Anti-coagulation Test is but I am positive for LA1:LA2 ratio antibodies along with:

ANA Ab, ds DNA Ab, ENA Ab, Anti-U1RNP, Anti Sm, Anti Ro, Anti B2GP1 , IgG, IgM, LA1, Cardiolipin IgG, IgM, IgA.

I was also found to have combs + haemolytic anaemia, with triple positive APS. I don’t know if my APS is secondary to or independent of my SLE, but I have a CVST.

Is there another or different test that I should we getting?

Many thanks,

Best,

Charlotte

lupus-support1
lupus-support1Administrator in reply to charlotte_g

I just wanted to clarify whether you also had a diagnosis of SLE, which you don't.

Great advice here!

Stay safe & be well!

Ros

Oh yes, sorry I made that rather confusing. I do have a diagnosis of SLE as well :)

Best wishes,

Charlotte

lupus-support1
lupus-support1Administrator in reply to charlotte_g

You might be interested in LUpus Patients Understanding & Support (LUPUS) here: healthunlocked.com/lupus-su...

With good wishes,

Ros

Most definitely! Thank you.

KellyInTexas
KellyInTexasAdministrator

Hello Charlotte,

Sorry for the bumpy start you have had.

Could you share the general region where you live?

It could help us guide you to a specialist.

This will get easier to manage once you get the hang of it-

1 . Consistency with green vegetables is KEY.

Preferable at the same time each day- with dinner is usually easiest. Make sure the greens are the same value in K. ( low, moderate, or high in value.) You will learn how to use greens as an additional tool to raise or lower your inr if needed. ( more k / higher value lowers the inr and a lower value of vitamin k will raise the INR once your body is used to the same base line amount consistently.

You will need to have a registered dietitian give you expert counsel in this area, or your APS expert hematologist.

2 . You may or may not find the finger stick method yields reliable results . You need to do parallel testing along side the vein draws to see how close they are. ( I was never consistent enough to be able to depend on the Finger prick machine- but many here are. You must keep a log for two or three months and see for yourself. Check concurrently- no more than 10 min apart.)

Hello Kellyintexas,

I live in London, England. I assume from your user name you are from Texas? I have family there!

I had my APS diagnosis in Colorado actually and had great care at Children’s hospital Colorado.

Thank you so much for your insights. I’ve never even thought of it in that way considering the vitamin K values rather than the amount of greens. I think that will make a huge difference to the inconsistency of my INR as sometimes I have for eg: brocoli and sometimes I have lettuce and even those could have very different effects.

Yes, I think they may have mentioned that they were not yet (and maybe never) happy for me to use the finger stick method for that exact reason, it’s rather unfortunate because my veins apparently “roll” which means they are very difficult to poke for the blood draws... this makes the process significantly more painful and gives me concerns that as I have more and more blood tests they will become more and more reluctant ( I feel like there’s already more of a problem).

Thank you!

Best wishes,

Charlotte

KellyInTexas
KellyInTexasAdministrator in reply to charlotte_g

Hey Charlotte,

Yes, I am in Texas. I’m situated in the central region known as “The Texas Hill County.” Our town is about an hour’s drive north West of San Antonio.

Yes, Charlotte, it’s keeping the K value and amount consistent that’s going to be key for you.

I’m going to tell you something very important next:

You will learn how to use vitamin k as a tool to help adjust your inr- up or down.

Warfarin takes 48-72 hours to reach maximum effect in your system. Vegetable germ Vitamin k takes about 12-15 hours. ( I’m not sure how long it’s effects last... I’d like to see a peak/ trough graph axis -) I think that would be the best way to look at that data-

If inr is too high- increase vitamin k

If inr is too low, decrease vitamin k

You might find a particular book very helpful: Eat on Warfarin by Cath Atkins.

She also has a blog.

She is a Scottish woman who also has APS. She had a stroke on holiday.... and APS was discovered to be the source .

I have very “unruly and rolling” veins as well. You will likely find that when your inr is high enough you veins might cooperate and not roll. ( 4.0-4.5 if you’ve have a stroke?

“blood clot on my brain?” CVT?

If you have arterial involvement the recommended guidelines are a higher inr than

The 2-3 which you have stated.

If you are in London, I recommend hematologist with guys and St Thomas, and ask for Prof Beverly Hunt. She is an APS specialty hematologist.

The other equally fantastic APS specialist is Prof. Hannah Cohen with UCLH. I believe she is only seeing APS patients now, ( she is my specialty hematologist in London. )

They are both excellent.

Hi KellyinTexas,

I love it over there my family is mostly in Houston but I go to summer camp in Austin so have many friends from all over.

Wow! That is so useful thank you!

No I haven’t had a stroke and it was a CVT. It was on a vein so I don’t think I have arterial involvement. Prof. Hannah Cohen is my Haematologist! Glad to know she’s got a great reputation.

Thank you so much for all your help, I’m going to have a look into the book you have mentioned!

Best,

Charlotte

KellyInTexas
KellyInTexasAdministrator in reply to charlotte_g

Charlotte,

The hill country is a Mecca for summer camps. Hunt Texas , where I live, is the epi center. We have Camp Waldemar for girls, Camp Vista for Boys, Sierra Vista for Girls, ( known as the Vista Camps) , Camp Stuart, and Camp Mystic. Those are the main ones.

MO ranch is also very fun- and is a great escape for families or retreats. ( if your family wanted out of the city. It’s about 2.25 hours out of Austin.)

You have a fantastic hematologist. I did not know who you were using.

Make sure to ask her about your greens. Dr Hughes used to host “patients day” once a year in London. Cath was one of the presenters, so I do know he trusted her work regarding greens/ vitamin k in the diet to augment the inr up or down as needed. Otherwise I would not recommend.

Please also ask Prof Cohen to expand and tailor for you specifically.

Kelly

Hi Kelly,

Oh awesome, I’ve attended camp longhorn for 9 years. Thank you for the recommendations, hopefully we will be out there soon.

Thank you for the advice for Prof Cohen, next time I have an appointment with her I’ll ask her about my greens.

All the best,

Charlotte

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