Letter from Guys hospital

[LouLamb]

I received my letter about my appt I attended on the 18th June.

Just wondered if someone could explain to me what the whole aspirin thing is about. Also what my bloods mean?

[PMRpro]

Sorry Lou - I can't read it from the picture. Can you type it out or make it a more detailed image? Just the bit you mean?

[LouLamb in reply to PMRpro]

I’ve attached a different image. Does that make it any easier to read? If not I will type it out later.

[NeuronerdDoaty]

Your fluid in your joints is fine. It looks like you’re not in an active flare up although your blood work is positive for SLE. Aspirin is good for a few reasons although it’s controversial. It helps with joint pain, it’s an anticoagulant so you won’t have problems with lumpy veins, however don’t take it on an empty stomach. For SLE it can cause problems down the road but I’d do what the doc says because I don’t know your entire history. The DRVVT is one part of a two part lab to see how likely you are to have thrombosis. Use the Aspirin.

[PMRpro]

Right - the aspirin is to prevent clots forming "thrombo" means thrombosis and prophylaxis means prevention. Aspirin helps stop the platelets (little blood cells that help blood clot) sticking together).

But I don't know enough about those blood results to tell you what they are - sorry.

[baba]

"Lupus anticoagulant" and "anticardiolipin" antibodies are "antiphospholipid antibodies" associated with "sticky blood"/Hughes Syndrome/APS/antiphospholipid syndrome (three names for the same condition).

This condition is often found in patients with Lupus and causes blood to clot. The aspirin is to prevent clotting as PMRpro has said.

You should ask the Nurse Specialist and the Consultant when you see them to give you a proper explanation.

For more information see the following websites or post your questions on the "sticky blood" forum here on HealthUnlocked.

ghic.world/

healthunlocked.com/hughes-s...

[Jmiller623]

ESR and CRP are inflammatory markers. You have mild to moderate inflammation. Lupus anticoagulant and Anticardiolipin repeatedly positive are the makings for a future diagnosis of antiphospholipid syndrome. APS increases risk for blood clots. Although world renowned specialists will say aspirin will not prevent blood clots, I call BS. Never had a blood clot. I started aspirin and noticed a definite difference in symptoms. My hematologist also recommends aspirin in addition to HCQ for my lupus and not yet troublesome APS antibodies.

Hope this helps clarify things. Depending on your symptoms, you may have lupus but you have to fit so many criteria to get a diagnosis.

[LouLamb in reply to Jmiller623]

I already have a lupus diagnosis. Have done for 5 years. This is new no one has ever mentioned aps to me.

[Roarah]

You are being given the aspirin to prevent stroke or heart infarcts. Unless you have had three miscarriages or certain pregnancy complications you do not have APS as you have yet to have a clot but with lupus, an elevated sed rate (which can show vasculitis), and a high CRP( over 3 is high risk for cardiovascular disease) and the high antiphospholip antibodies you are at an elevated risk for arterial clots. HCQ will be helpful in lowering your apl antibodies hopefully.

To lower the CRP exercise, lowering stress and a heart wise diet work better than any meds. With your profile heart health is of utmost importance, more important than the low dose aspirin, in preventing a serious clot. You may want to ask for an echocardiogram, lipid panel and have your carotid artery checked. If not already on a statin, they are showing great results in lowering systemic inflammation even in patients with good cholesterol profiles.

Take care xo

[LouLamb in reply to Roarah]

Oh wow !

I will defiantly be talking to the nurse in August about all this. Just to get some stuff clarified and explained more I think. A lot to process if all this is what could happen.

[Roarah in reply to LouLamb]

Am hopeful you will be fine but if you are not exercising daily or eating pretty well now is the time to start making lifestyle changes. I can attest to how well a extra little daily action, meditation, and fiber can work. In December, a few months after my strokes, my ANA was positive, Apls over 150, positive ro, la and smith antibodies, cholesterol 170, CRP 5.6 and ESR 13, last three were ok but high enough to be risks for further strokes.

Last week my blood draw revealed a negative ANA, all negative antibodies including the Antiphospholips, Cholesterol 125, ESR 2 and CRP down to 3(still trying to lower that by 2 😆). My hemo and rheumie were about to put me on HCQ in March. I asked if I could try to lower my results naturally for a few months but promised to take warfarin, plavix and statins during this time. My doctors just told me they do not feel I need HCQ at this time. Keeping me on the antiplatlet, warfarin and statin for life though due to history of stroke.

Oh I forgot to mention you should ask about vitamin d levels. If low ask about supplementing.

Xo

[Treetop33 in reply to Roarah]

I received a diagnosis of APS by testing positive for one of the antibodies, one miscarriage, pre-eclampsea and no history of clots (though my family do). Thankfully my antibodies have now disappeared. I can't tolerate asprin so was put on clopidogrel. I take one every other day.

[maggielee in reply to Treetop33]

Tt what is clopidogrel ? Vs aspirin- same family of meds? Also, intolerances to aspirin? As I have lots of acid reflux, but was having a discussion yesterday about aspirin & usefulness for pain relief.....achy legs etc ml

[Treetop33 in reply to maggielee]

Asprin brought back my acid reflux so I had to change. Otherwise I would have much preferred to have that.

[Jmiller623]

Oooooooh. Lupus plus antiphospholipid....I’m in the boat with you. Unless you’ve had a documented blood clot or miscarriage, APS cannot be diagnosed. Aspirin I believe does help prevent clots in those who have AP antibodies but the data says otherwise. I’ve always been told do what you can tolerate. Some people are bleeders so taking aspirin may not be wise. I can feel my blood is sticky. Feels like thick simple syrup without aspirin. Trust your body but a little aspirin can’t hurt if your otherwise healthy and mobile. Good for cardiovascular disease and GI cancer prevention as well.

[Oshgosh]

I don’t know much about this,but. I think the aspirin will be to make your blood less sticky ? Reducing risk of clots.

I’m sure there are loads of people on here who know more than me.am hoping the sun to shine later.

[Georgie-girl]

Lupus anticoagulant and anticardiolipin antibodies are tests done for APS. Antiphospholipid syndrome. Otherwise known as Hughes syndrome or sticky blood. It is relatively common with Lupus I believe. It's basically that your blood is a little too thick and sticky so it doesn't flow as freely as it should and causes all sorts of issues. Many people were told they had MS before finding it was actually APS that they had. The treatment is mainly a simple baby aspirin to thin the blood and make it less sticky. Occasionally it warrants a stronger blood thinner/ anticoagulant but more often than not it's just an aspirin. These blood tests can sometimes be positive due to an infection but as you were positive on both occasions it looks like you may have it mildly which is why the aspirin is recommended. I had weakly positive results for about a year then it just returned to normal and has been so ever since so dont worry. X

[Ebaymama]

Please do take care of yourself!! I had a blood clot 25 years ago that went from the inside of my left leg up to the crest of my aorta. I had fallen off a podium and hit my pelvis on a pointed metal corner ( try to do that twice!!). I was found to have a genetic blood clot disorder. It had just been discovered a short few years before but not rare. Have been on anti-coagulation therapy for 25 years. The body is a mystery but glorious thing!

I am not trying to scare you but rather agree that a low dose aspirin is a very good idea:). Wishing you healthier days ahead!!