Sticky Blood-Hughes Syndrome Support
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Blood clot

Well I m still in the process of getting a specialist as I lie in my hospital bed. It seems very likely I have a blood clot in my leg. My fatigue has become life altering and I feel like I m drowning in uncertainties. I know there is not much anyone can say to help me here cause I don't have that specialist but I will say that this condition is hurting my family.

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Im so very sorry this is affecting you so badly. have you had no luck in finding a specialist yet? What part of Canada are you in?

I know its difficult but please try not to worry took much, Im sure they are treating your clot as they should and the rest will be sorted when thats under control. Try and take each day as it comes and in the meantime we will try and see if we can find a name for you.

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Actually I reached out to the lupus group in Ontario cnda and they have been amzing! Very supportive and they told me some interesting things. One of them is

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Its always better to get local information if possible so Im glad they have been helpful. Im waiting with baited breath to hear about your interesting things!!

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Is that LA is a symptom of Lupus. The nurse just came in and said there is no clot so now they don't know why my leg and foot are so swollen. This makes me so mad cause I just want to know!! They gave me a blood thinner last night and it seems to have helped a bit but don't know what to do now.

I m so dam tired! The doc has me on a pills they give to people who suffer from narcolepsy to hop keep me ask during the

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Keep me awake.anyway I was told that the reason for calling it LA is its link to Lupus. Basically we r one step from having full Lupus. I thought we talked about it here and was told it is not Lupus

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They also said that no matter what if I m tired I must sleep because my body is saying I have to have it. So opposite from the sleep doctor who says don't sleep during the day.

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The lupus anticoagulation test (LA) is confusing for doctors and patients. It is NOT a test for lupus (systemic lupus erythematosus/SLE), but a complicated clotting test.

Approximately 25% of patients with SLE ALSO have APS/Hughes Syndrome. I am one. It was because Dr Graham RV Hughes was/is a lupus specialist, that he "discovered" APS.

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The way they said it to me, which is apparently from the two leading specialists in Canada (?) Is that LA is a symptom of lupus. It does not have anything to do with the test. U r right from what I understand ,and I don't understand much, that we have been tested for something very specific but it does not mean it is not a symptom. At least that is what they said. I will say however that when intoldnthemmi was a part of this group they were very impressed and saidnyou would have info that they don't even have

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*when I told them I

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Hi Salmonious,

I have LA( Lupus Anticoagulant) and it is one of the tree antibodies they always test for APS. It is not a symptom but a sort of proof that you have got APS.

As Ross says 25 % of patients with SLE(Lupus) also has Hughes syndrome/Antiphospholipidsyndrome.

You need anticoagulation and a Specialist which we as I understand it, is going to help you find in Canada.

As APsnotFab says I am sure they are going to treat you for your clot and I am sure they know what LA is. Otherwise you could tell them.

Good that your are taken care of in a hospital. I wish you good recovery and please let us hear how it goes for you!

Best wishes from Kerstin in Stockholm

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This must be very confusing for you because it seems that for these doctors, APS/Hughes Syndrome is not a separate medical condition, but merely something that a minority of patients with lupus have!

According to a US Study (2016) 30-40% patients with SLE test positive for aPL:

ncbi.nlm.nih.gov/pmc/articl...

Obviously, treating patients who have SLE and APS, will be different from treating just SLE. However, to understand the clinical meaning, is complicated as the paper implies.

IF you are interested, I have a paper written by Dr Hughes, (1997), where he lists 14 symptoms of SLE, to help non-lupus doctors in diagnosing SLE:

Is it Lupus? - The St. Thomas' Hospital "Alternative Criteria"

lupus-support.org/topic/253...

This paper is written to help any lay person,including doctors, who rarely diagnose SLE, unless they are actively looking for it!

You will need to create an account on the LuPUS Message Board/LUpus Patients Understanding & Support (LUPUS), which is necessary to stop the spammers and bots. Any difficulties, let me know.

With good wishes,

Ros

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I will absolutely make a copy of this and forward to the lupus support group. They had actually asked for copies of anything u gave me so they can pass it around. Your knowledge actually all the Adkins knowledge is truly impressive. Thank you so very much.

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Always a pleasure if I can help you.

May I ask which lupus support group to which you refer?

My organisation here on HU is LUpus Patients Understanding & Support (LUPUS)

With good wishes,

Ros

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Ontario Lupus Association

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I am wondering if u would mind doing me a favour? The Lupus group I have joined wants me to send them the information u gave me earlier but I cannot do it. There is something wrong with the yahoo mail. It will not allow me to copy and send. I am hoping that if I give u their e mail address would u mind sending them the same info you gave me? Thanks

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The address is lupus.Ontario.online@gmail.com the contacts name is Cathy Ferren

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Done. I hope they know your name: Salmonious!

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Hi. I took those narcolepsy drugs for a while but did not feel they helped much (nuvigil, provigil, and Ritalin).

Nancy in West Virginia

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The one I m taking is called Modafinil. I looked it up

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And it seems to have a lot of uses such as greater focus but it is not the same as Ritalin. Even though they have similarities Modafinil is more potent for long term use, has less side effects and addiction risks. U can get just as much focus but with less than half of the side effects. " stacked with a hoard of other similar and related Noortropics

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Sorry but my tablet is giving me a hard time - Nootropics (a mentalnproductivity

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Mental productivity drugs. And brain enhancing Smart drugs in order to improve brain power, energy levels, and overall cognition.

I like this drug becausevit really does help me stay awake and not make me feel like I have taken anything like speed. Mind u I don't take it everyday which is wrong cause I definitely need it.

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Thank you so much! There is the possibility I will get to see a doctor just an hour and a half from here (in London, ON Canada) or there is one in Toronto which is 4+ hours from here. So it looks like I m now much closer to a solution. I truly appreciate all of the support u have given me. Thank you just doesn't seem to fit.

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I am so sorry to read of your struggles. Chronic fatigue issues are real, but the symptoms can not be measured externally. So, it can be so hard to relate to friends, family and health professionals because “you don’t look sick.” My! How I learned to hate that phrase! But you/we are not alone. There is even a web site: youdontlooksick.com. Check it out and read the “spoon theory.” Its not a cure, but again, it may help you feel the support that all of us other “you dont’ look sicks” are sending to you.

Gina in West Virginai

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My son suffered from severe chronic asthma and had to live in a children's hospital for four months. We faced the same problem with other parents looking at us with disdain cause their child might be wearing a body cast and ours looked normal. The hospital called them "invisible" because u cannot see their illness.

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My hematologist says that people with LAC ( yet another name for APS/ Hughes- )

Can have the veins swell / inflame from irritation from the antibodies - along the vascular walls. They can swell shut - this can lead to a clot or not. But the vein can re open quickly. This can cause the swelling and discomfort while it was closed, or partially closed.

Perhaps this is what happened. It’s a spasm of veins that’s not at all uncommon with APS and can be very hard to distinguish in untrasounds. ( between clots / spasms=swelling closed)

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What great information, thank you!

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What fantastic replies, what a great bunch of comments. I think like the rest of APS and SLE Systemic Lupus sufferers. the cures are for you to find. Ask as many questions as you feel are important, start to build a picture and start to find what works for you. Speak openly your family. Show your family some of your replies. so they know others suffer the same.

Eat well - stay positive - stay active physically and mentally even if its just a little a day. Remember. there is ever chance symptoms will settle and you will get remission, secret is to stay in remission !!!!!!!! For ever. !!!! if possible & good luck you can do it

Linda Sunshine Coast Australia

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The one thing I took home from my visit to the London Bridge Hospital was the Prof there telling me that even on my worst days, I wouldn't look 'sick' and my husband was with me to hear this!! On bad days (thankfully few and far between lately) I can just say I'm not well and go and lie down. My walk buddy also calls me the healthiest looking sick person she knows :) Right now the heat is getting me down a bit-gonna be 42 today and 45 tomorrow and high 30's the rest of the week.

The other thing that helps me is walking-always in a better mood when I come home and feel a bit energized to do a few things around the place.

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Hi Salmonious,

The drug "Modafinil" you get now is a drug used to help with narkolepsi.

It is a "Narcotic drug" here in Sweden and is said to cause addiction and only used for people with narkolepsi. Rather new what I understand here.

I should never use it and especially not before I have met a Specialist who knows how to treat APS and LA.

Kerstin

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Thank you for y our in put, I really appreciate it. I did some research because someone told me it is the same as taking Ritalin. According to the medical journals this drug has far less side effects, addiction rates are low, but I don't recall it saying it is actually a narcotic. So far it is helping me but I will check it out t with the doctor. Thanks

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I am worried about you that you have not yet found a Specialist of autoimmun illnesses who has had patients like you with HS/APS before and knows how to treat you! Canada is your country.

I wonder how old you are and if you family could help you find this Specialist you do need to at least thin your blood?

I think I remember you have been operated before and that can be a trigger for APS. Some sort of trauma can be a trigger but many other reasons also - we do not know. Are you on any anticoagulation-drug now at the hospital? I guess you are.

Kerstin

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What do you mean it can trigger? When I had that failed surgery and I had a large clot block my bowel as well as a clot in my lungs

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Is that what you mean?

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This is a tricky illness that is why we need a very good Specialist who understands APS. We can have the antibodies positive in our body but without any symptoms.

It is said a "trigger" is need to start the process. You know I am not a Doctor I only can tell you about what I have experienced myself and what I have read and learned on this site for 6 or 7 years.

What the trigger is can be individual and by chance. When we operate or are in an accident with blood involved I personally think it is then the process starts.

Are you on any anticoagulation now? Hope you find that Specialist soon.

Kerstin

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I am on nothing and I still don't know if I should be concerned because my one leg is all swollen again. My foot is also quite swollen but the hospital sent me home the other day saying all I needs was compression stockings and that was it. There was no clot so that was it. They said it is an old age thing!?

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Are you able to at least take a small dose aspirin? Again we cannot provide medical advice this is just my thought. Do you have any reasons why you aren’t allowed to take aspirin? Any contraindications? I also am worried. Hugs, Cindy

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The incident that started this whole thing for me was a disastrous bariatric surgery therefore I cannot have aspirin or antiinflammatories. They gave me several blood transfusions and it was just after that they said my blood changed.

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A transfusion cannot cause APS as it has been explained Ad nauseum to you on your previous posts. ( and I do believe you are not implying that now. I think you have had a learning curve as we have all had to under go in the beginning.)

Kersten is telling you a trauma/ perhaps you can join the dots now/ the bariatric surgury was the “ second hit” for you.

Dr Hughes theorizes there is likely a perfect storm brewing. A genetic tendency lying just beneath the surface. That’s the ,” first hit.” You May never even know about it until the “ second hit” comes along. For you- it seems the bariatric surgury itself. I suspect the transfusion was coincidental, unless you had a severe reaction to it- the the “ hit” woukd have been your bodies immune reaction- not that you got someone else’s APS faulty auto immune antibodies “in your system.

Makes sense?

If I’m harping on something you already have perfectly well figured out, my apologies. I’m just remembering your previous posts from much earlier.

Hoping you are better!!!!

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Wow! U make perfect sense to me and is very logical. I thank you very much.

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You hang in there. APS is still not well completely understood.

For example- my D diners are not raised when I have obvious DVT’s. ( by scans.) one theory is Some sub set of APS patiens don’t break down clots correctly. This means d dimer measurements are not accurate. ( perhaps for me Personal. So individual.)

There are likely many sub sets of APS. This is why tests are tricky. ( and can be limited.)

It’s back to that old adage... “ keep some what of an open mind, but not so open your brains fall out!”

The scientific method is critically important for measured thinking. Replication of data. But it can sometimes restrict our safety when it also means to do the opposite. I know we harp on this. It’s a really difficult situation for physician and patient alike, when ultimately everyone wants what’s in the best interest.

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I don’t belive it’s an ,” old age thing.” I still think if they cannot detect a clot it could be the swelling/ inflammation of the vein... which can lead to a clot so be careful.

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My clots have never showed up ,,,,,,, now I am trippel positive with high titres. We can just guess from trying to understand this illness and from own experiences also.

Kelly is describing it good above I think. Also prof Hughes words.

Hope you hurry on to see a Specialist as this is a very tricky illness as said before.

Kerstin

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I want to add that I have been triplepositive with very high titres for a lot of years but as I have micro emboli and microclots they do not show up on a Scan or whatever it is and the Doctors had difficulties to understand.

They understand now but that is a bit late as the symptoms may get damage to your organs. It is my own fault also as I was not at that time eager to be on any anticoagulation drug like "ratpoison" (Warfarin or Coumadin) for APS even if some of the Doctors suggested that.

When I was properly anticoagulated with Warfarin I could feel the difference and that is what I now want to tell everybody about. We need to thin our blood!! This may mean a struggle and a great fight which we must accept if we want our life back.

Our blood must be stable and at a rather high level around 4.0, at least for some of us.

Kerstin in Stockholm

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🐀☠️❤️👍🏻

Remember the APS mantra:

“ We don’t bleed, We clot!”

For us, it’s not 🐀 poison.

I think we are very lucky in many ways that there are relatively few side effects ! For most TRUE APS patients, you really can’t tell you are on warfarin, other than the dietary regiments, but they are easy to adjust to once you learn the rules. Honestly, it promotes healthy eating habits. Steady daily greens! We all need this.

( obviously you know this! I’m saying it for the benefit of others. Warfarin can be so daunting an idea at first- good to hear the good things about it for a nice change!)

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