Sticky Blood-Hughes Syndrome Support
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a letter from the haemostasis today.

hi all. i got my letter from the haemostasis but its in docters language. just some of the things he said . i have a 2.4cm nodule in the right adrenal gland. a screen for lpus anticoagulant was positive with slight caveat that the interpretation of these results is harder in people on warfarin. its possible that she has underlying antiphospholipid anitbody. weather immunosuppressive would benifit stacey in view of ongoing symploms. should she develope problems labile inr then she would be suitable for rivaroxaban as per guidance. whot do you think as im unsure. whots the diffrence between lupus and hughes? thank you.stacey.x

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Hi Chapman,

Perhaps I am not the person to answer your question but at least I have Lupus anticoagulant but it is not the same thing as Lupus.

If you read the book I mentioned to you, you can read a lot of these things. If I were you I would ask your doctor. He or she must answer your questions.

Best wishes from Kerstin

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thank you. i would ask my docter but thay have no idea about this. im sorry but whot was the book u mentionedat the moment i dont kw if im coming or going. stacey

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Hi Kerstin,

May i ask if it took a long time for your diagnosis ? I have had two boarder line Lupus results

but still cant get a firm diagnosis of what is going on.

I have other illnesses but it is now very obvious something secondary is going on.

It all seems to be taking so long with endless waiting to see consultants for further testing,

I keep taking photos of myself when my body is under attack to show my Gp just out of desperation for help.......Jill x P.s Hope your keeping stable lupus is not nice.

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hi it took about 3 months, very slow where in live. i hope u get answers soon. take care. stacey.

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Hi Stacey,

I'm not to up on the adrenal gland and its links, although I have seen others who have adrenal issues on here, hopefully they'll le be along to help soon, however I will have a nosy see what I can find for you!!

The lupus anticoagulant is one of the 3 tests for antiphospholipid syndrome, I'm positive LA,

Confusingly LA isn't related to actual lupus. The lupus anticoagulant test can be affected by warfarin.

As they seem pretty sure you have APS/Hughes, at least you're on the right track,getting a diagnosis is a difficult journey for a lot of us.

Rivoroxoban is one of the new anticoagulants, not used much as yet in APS patients, although I'm pretty sure it's in clinical trials. I know it's been used in other countries around the world,

Have you had a look at the Hughes foundation website, it has lots of info on symptoms diagnosis, treatments. Etc. hughes-syndrome.org

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

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hi jessie. thank u. i hope thay sort me out soon too! i will have a look at the web site soon but its hard taking it all in and keeping it in. stacey

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Hi There, taking the things as you have mentioned them. Adrenals are usually dealt with by an Endocrinologist. Therefore you need to ask for a referral to one to sort out whats going on there. The fact that you have got a nodule could be something and nothing as we all have harmless nodules here and there but you need to at least find out what yours is all about and if it is influencing anything in your Adrenals.

Lupus Anticoagulant is one of the tests done to look for Antiphospholipid Syndrome and means that you were positive for the antibodies, it does not mean that you have Lupus. The name of the test is confusing I know. Warfarin can interfere with this test but usually they take that into consideration.

It would be interesting to know what the result of the test was with the reference range. Does the letter give that? Can you ask for it and then post here.

Immunosuppressive drugs are given if they think that you need to have your antibodies dampened down, this can really help with symptoms.

Rivaroxaban would not be offered in this country for Hughes Syndrome (APS) at the moment as trials are still on going and it could be a few years before its safe to offer it.

Stacey you now need to go and talk with your Doctor about this letter so that you have a good understanding about all its contents and what the next steps in your treatment plan is for you.

Please let us know how you get on. x

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hi thanks for info. i will speak to the docter but thay dont kw whot aps is. im finding it hard to cope with everything , personal and mental. at the moment. im very frustrated as i dont understand stuff. stacey:'(

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Im in the US and i was prescribed rivaroxaban, but due to insurance/cost i havent even started it. Just as a cautionary note, research it yourself under xarelto. Ive heard people say it changed their lives. But there are warnings of severe bleeding and you have to monitor kidneys as well

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lovemyheart: No one in the United States need ever not receive medication due to cost. Please contact: helprx.info. You get the highest percentages there (85% off on almost all drugs). Usually, even with drug insurance I end up "in the hole" for 2 months of my drugs a year. My Fentanyl patches are about $300=400 for 10, 3 day patches. Believe me it adds up. Also, freemedicineprogram.org , no questions asked except what you need.

SimpleSavingsCard.com - also,Prescription Assistance - Over 1400 Medications Available.

Annual Income under $42k to qualify.

myrxadvocate.com an actual person to help you navigate through the land of pharmaceuticals. Perhaps they don't carry the exact drug your doctor prescribed but do carry a drug that does the same thing so they will call your doctor and ask if this drug they can give you free will be ok in your particular case.

Remember, no one in the United States ever need be denied a hospital due to cost. There is never a reason any American need go without necessary medications due to cost. Fortunately, this country has the Vanderbilt's Teaching Hospitals in Tennessee and St. Jude's (Danny Thomas) for any child without funds. There are more philanthropists in America than any other country I believe. So go get your rivaroxaban and tell your GP about these resources so no other patient of his thinks they are denied medication due to cost. He should have made it his business to know how to help his patients get the drug. Any drug. He could have asked his drug represenative for samples. There are many ways MD's can help, but you need to let them know there is a problem. Can't fix a problem unless you know it's there.

Good luck.

Feel free to pass the word to anyone you meet who denies themselves necessary drugs due to cost. It is so unnecessary in this country.

Smiles, hugs and I hope this helps.

CanaryDiamond10

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Canary Diamond10,

Great info here, I'm excited to see what kind of help I can get. I currently have a $3000 deductible which presciptions are part of so I pay 100% until the deductible is met and after I still pay 20% of everything. It's not like it used to be when all I paid was a $5 copay for doctor visits and scripts! "Obama care" is yet to help me and my family... Anyhow, thank you for posting these resources:-)

Best,

Dagen

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Hi Chapman and Jillmo,

See the absolute perfect answers above. As my language is Swedish I have a bit difficult to express myself.

Although I know quite a lot about APS. I have had the Igg, Igm, Beta2Glycoprotein 1 and Lupus Anticoagulant since 2002. High titres. Always positive.I have been on Warfarin since 2011 and that was a total change. neurologically. I am 69 in June and I think I have had this illness for 20 years.

Thank you all you nice persons.

Kerstin

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Hi Kirsten,

It made me smile to read your email :) you have expressed your self very well !

Did you struggle to get a diagnoses Kersten ? I am finding it a battle to get the relavant testing even though i have had sticky blood in the past.

I went to the doctors this afternoon to try and explain my many symptoms, all i was given was cream for my skin, lubricating drops for my eyes and a saliva spray for my very dry mouth.

He ignored my sticky blood, the numbness in my feet and ankles, the red blotches on my legs.....i could go on and on with different symptoms.

It is not easy to get answers in this country,that Gp did nothing but depress me.

If only he knew what a struggle it was for me to get to the surgery he might have had a different attitude.

I am 62 this year a gemini like youself mines the 3rd of June.

Hope your keeping stable with regard to your illness, i have felt for the last three years that i might have lupus but tests results show boarder line.

Take care of yourself

Jillymo x

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Hi Jillmo,

Yes, it took quite a time. It was a long journey.

Best wishes

Kerstin

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