Sticky Blood-Hughes Syndrome Support
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Sed rate

Does anyone else have a high sed rate with their APS?

My last see rate was 105. My rheumatologist saidf APS can cause high inflammatory marker and stopped looking for anything else.

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I am not sure I understand your question. What positive antibodies did you have when diagnosed? Cardiolipin, Beta-2-Glycoprotein1, Lupus Anticoagulant? Do not know what "see rate 105" is.

We can have high titres of those antibodies. Did you mean "titres" perhaps? There are very few Doctors who know this illness.

As to me I am triplepositive and have persistently very high titres since 2002. For some members the titres go up and down a lot and it is possible to be zero-negative for some time (no positive antibodies) and later again positive. The APS does NOT go away even if the antibodies are low for some time when you have once been diagnosed twice with 12 weeks between the bloodtests.

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I don't think I mean antibodies. I have lupus anticoagulant in my blood. I'm talking about inflammatory markers (ESR & CRP) both are high on me, and my rheumatologist told me since I have APS, that's causing those inflammatory markers to be so high.

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I believe that’s right Missy. My RF ( rheumatoid Factor ) fluctuates. On a scale where 7 is the highest end of normal, and 3 x that number ( so , 21) is considered excessively high, I’m at 512 I think. But I do not have RF. It’s just an inflammatory marker. Always through the roof high.

Ive had one ANA positive.

I’m positive APS and it’s my prominent disease process, but I do have a lupus like illness with it, and sicca progressing to Sjogrins and a mildly lazy thyroid.

Many of us fit exactly this profile.

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Hi, I presume your consultant is just monortoring you? I hope you are on some kind of anticoagerant?

Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn't a stand-alone diagnostic tool, but it can help your doctor diagnose or monitor the progress of an inflammatory disease.

Is your consultant an APS specialist, this is very important to us?

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Thanks for explaining sed rate I hadn't a clue what it meant until you explained.......I wish people would not abbreviate.

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An important test with the ESR is CRP or C-Reactive Protein. Usually, a high ESR & low CRP indicates an autoimmune inflammation as would be seen in SLE, for example. A high CRP would indicate an infection - but not always. Only your doctor can determine its meaning from all of your blood tests.

With good wishes,

Ros

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My CRP is usually high, just not real high. My ESR has been sky high for last 2 years. My GP was ordering the test, but didn't seemed as concerned as my neurologist was. My old neurologist suspected I have some type of vasculitis or connective tissue disorder. That's why I ask you all about this. I know there is something else going on, but after my rheumatologist found the APS, he stopped looking for anything else. I have so many other conditions, it's hard to keep up with everything and what meds are working or not. My hematologist confirmed that APS can cause high ESR, but not how high.

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I think you need to be referred to a rheumatologist.

With good wishes,

Ros

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I agree with Ros. The rheumatologist will monitor you better. APS might only be the beginning. After mine diagnosed APS (emboli in lungs so I'm on warfarin) and Raynauds, he monitored bloodwork every 6 months --then Connective Tissue Disease and finally Lupus 5 years later. It's best to get a good relationship started with a rheumatologist. Inflammation (high sed rate) is not our friend and can do damage over the long term, and he/she will know what to look for and be able to answer many of your questions better than a GP.

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My rheumatologist stopped looking after he found the APS, told me he couldn't do anything else for me and that I needed to follow up with pain specialist. I originally went to rheumatologist for Polymyalgia Rheumatica diagnosis, prednisone helps the pain, he gave me the prednisone, but no additional diagnosis. However some or most of the pain I feel does sound like APS and that my INR is off. Prednisone gets me out of bed, otherwise I'm too sore to even roll over in bed. But now I have you all I can sound like I know some of what I'm talking about.

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In the United States, our doctors call it a ,”Sed rate.” At least everyone of them I have ever worked with has.

It has been a fun learning curve for me to figure out what “ ESR” and CRP is. Our doctors here say ,” C reactive Protein” for example! We just dont recognize it any other way- Go figure... I never put it together, CRP and ESR.

Also... I couldn’t figure out what glandular fever was... mono of course!

Some of the differences are pretty funny. Infected waters... I couldn’t figure that one out! We always say UTI.

And you say , “ thrush.” We say “ yeast infection... if we mean in the southern region of things!

Babies get thrush on their tongues and bums!

You guys get ,” chest infections “ with a ,” chesty cough.”

Well, we get upper respiratory infections ( may be viral or bacterial) with either a wet / croupy ( “the croup”)or dry , unproductive cough. Those wet or dry coughs can be either productive or non productive.

I learned this in England when my daughter’s friend came down with a “chesty cough” and we had to go to Boots! Learned a whole new vocabulary !

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I do see hematologist for APS & MGUS. He's not the dr doing the ESR. And since I've gotten a reply asking what sed rate is, I can guess that people with APS don't watch the sed rate one way or another. Which tells me that a lot of my current pain has to do with something other than APS.

Is APS an inflammatory condition?

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Missy, I know you are asking Holly this question. It’s really an excellent question concerning APS and it’s inflamnato status. Holly may be asleep , as it’s 5 hours ahead in England. ( although she can be a night owl.)

I might take the liberty to try to answer you the best I can - it’s the least I can do since I couldn’t resist teasing you😉❤️.

I’m really sorry you are dealing with pain.

Short answer- I don’t know.

Many here have joints swell and ache due to the “ lupus like aspects “ of disease process.

Professor Hugges says auto immune diseases often come in gangs. APS is seen as the ,” Big 3. APS, Lupus, Sjögrens.

( with that comes the lazy thyroid)

I know MaryF and APsnotFab tell members to really cheek the following:

Vitamin D -

Vitamin b

Thyroid - go beyond the basics. Check the t-3 to t-4 conversions. Gen an extended evaluation.

Check ferretin levels. Should be at bare minimum 60. Closer to 80+ To 100- here in the states they run it too low

If these basics are off you can also feel worse and have more aches and pains.

I will tell you I have vascular pain if I’m too clotty . If my INR is too low I spasm in the vessels and get phlebitis and then that leads to actual clotting.

Muscles may not be getting oxygen if INR is low-

So there are different kinds of pain.

Tell me- what is your hematologist running your INR at if you are on warfarin? Or, are you on another thinner? What is your clotting history,? Venous or arterial? How many clots if venous? This is an extremely important question- it tells the story of the safety of your Anticoagulant. Any other added antiplatelt with it?

Any reclotting while on your current therapy?

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You couldn't have answered any better - thank you.

Ill wait to hear what anticoagulation she is on and any clotting, re-clotting history?

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I'm on Xarelto, last time my hematologist checked my INR was almost a year ago. It may have been checked last time I went to ER which was in January. My vitamin D is low, but hematologist has me on iron supplements since I have iron deficiency anemia. My numbers are still low, but climbing. I've only had one non provoked clot, it was in left vein of leg (crease where my leg connects to belly). My clot is gone per venous Doppler imagining, and to my knowledge I don't have new one, even though I worry constantly because I'm having muscle spasms in my right leg and was having pain and problems moving this morning, which is how my other DVT symptoms started. I ended up in ER because my leg wouldn't function.

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And Sjogren's & Lupus was ruled out via blood test. I've had problems with Thyroid but PCP said not bad enough to treat. I had thought I did have Sjogren's bc of extremely dry skin, especially on face and my face breaks out in Mylar rash especially when exposed to direct sunlight but test came back negative. I have new PCP since old one fought me every step of the way.

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I’m going to let the admin answer you now- they have years on me. Especially with the thyroid. The rash is more lupus spectrum than some. Ros is very good with this. Mary F and APsnot fab especially are the thyroid gurus. You can look at my post from a few months ago on thyroid question. I posted my levels and she answered many questions.

Holly- she is a guru over viewer of all things. Balance of all things and all are great with articles.

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PCP should not be making those decisions about your thyroid- especially in light of an APS diagnosis. Your Rheumatologist should make that call.

What state are you in, Missy?

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I thought I would need endocrinologist for the thyroid but my old PCP refused referral, that's why she's my old PCP. New PCP checked everything and it was normal. All numbers w/I range. I know my mom said she had thyroid problems for years before she got diagnosis. I'm in Arizona.

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Have you finally got an APS specialist, there is someone else looking for a specialist in Arizona maybe you could help her: kstone81 is her name here I believe

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I haven't found a specialist yet, but I think my pain Dr has referred me to orthopedic Dr who specializes in APS, waiting on referral. I'll let her know if it turns out that way

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Good luck I hope it all works out for you

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I had my CRP back recently at 6! Which considering I was flaring at the time, was not too bad. MaryF

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Right. Abbreviations again. In the states we add an ,” A” in there only if it’s elevated. ( between the R and the P.) 😉

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I'm in the states Kellyn and I've never seen it with an "A" in there. I've only seen it as CRP.

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It was a “funny” as in CR_P

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Witty’s witty!

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It took me a few minutes, but I got it now. 😂 😂

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Come on, Missy. Do I really have to ,”spell everything out for you?” geez...

😂

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It went above my head, and I still don't get it. Lol

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I do get it now

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She meant crap, silly

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CR “A” P!!!

As in , oh crap! It’s elevated!!! Ha! And now on top of it, I’ve literally ,”spelled “ it out for you! Lol- two jokes for the price of one. You are welcome!

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LOL, Kelly!

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Hi, Yes mine with Aps ranges between 19 and 25, my sister who had lupus was 95 to over 100, my friend who has rheumatoid arthritis is always over 100. erythrocyte sedentary rate, i.e. ESR.

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My CRP is 1 every time.

All the same I am triple positive with exstremely high titres since 2002.

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What kind of test would I need to check my titres?

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Always when I take a bloodtest to know the titres from my 3 positive (always positive) antibodies I get the answers with the antibodies. I have > 160 (should be < 20) How much over 160 we never know. Might be different in different countries I do not know.

Those with APS that are triplepositive with very high titres are at a greater risque. Also those with two antibodies (aCL and anti-B2GP1) together. Still you can be diagnosed on only one antibody taken twice within 12 weeks time!

As I am not a Doctor only a patient and these things are difficult to understand even to the Specialists, I can not tell you anymore but those are the facts. Why I have low CRP I have not thought about as I have so good Specialists around me. One Specialist said once to himself: "perhaps anti-CRP could be possible", and I heard him. Sometimes it is good not to know too much also......!

The three antibodies to test for a diagnose are:

Anticardiolipin antibodies (aCL)

Lupus Anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Hope you will understand a bit more now but the most important thing is that you have a SPECIALIST OF AUTOIMMUN ILLNESSES who understands these things and especially the symptoms that may follow the disease. It is a blooddisorder as we have too thick blood that we must thin to avoid clots etc etc.

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So I have been checked for these antibodies, I'm positive for Lupus Anticoagulant taken twice within 12 weeks.

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Then you are positive!

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