Sticky Blood-Hughes Syndrome Support
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Anti inflammatory?

I've been diagnosed with having significant osteoarthritis in my lower back and sciatic joint. My chiropractor said anti inflammatory drugs can help but he knows ibuprofen and such are off limits. He suggested omega 3/6 (which I now know are off limits too) and glucosamine/chondriton/msm. Any other suggestions? I don't see my heamatologist until sept 15. I'm currently breastfeeding so the strongest thing I can take is Tylenol 3 w/codene.

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Hi,

I should speak with my Specialist about this. Do you think you could wait with the pain till September 15 when you see your Hematologist or is the pain too severe? Is a chiropractor really the right Doctor to see? I doubt that.

Is your Hematologist specialized in our autoimmun illnesses also? He or she knows you are on Warfarin also. Have you got a higher level today than an INR of 2.0 - 3.0? You have had a stroke and should have the higher level of INR, over at least 3.5 like most of us here. As a matter of fact a higher level of anticoagulation can sometimes help joint-issues and pain also.

Hope you can enjoy the days with your little baby.

Best wishes from Kerstin in Stockholm

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I now read that your job is to train horses so you say you can not have a high INR because of the risque of bleedding. It could be dangerous of course but you must know that our blood is very thick. The Doctors (only Specialists) do not understand this fact.

I think I remember that you had arterial symptoms and needed a higher INR than 3.0.

The anticoagulation drug is the most important drug for us and that it works 100 % (if that could be possible).

Kerstin

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I've been trying to fight through the pain but it's just getting too much, my appointment on the 15th was the quickest I could get. My team is great and familiar with APS. Sorry, I missed some info, my md recommended the glucosamine, Chiroptactor the chondriton and MSN. My chiropractor is great, not a crack you method, saved me from surgery and got me off narcotics for neuralgia. I'm not sure where ideal is with me yet, too high inr and I bruise and hematoma like crazy, too low... not good. I've had 4 cat scans in the past year for possible intercranial bleeds.

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What is your therapeutic level for INR?

You really need a good Doctor who knows what different blood-samples to take for autoimmun illnesses.

Like HollyHeski says you might have Sjögrens also as Thyroidea, Sjögrens and HS/APS are "THE BIG THREE" as prof Graham Hughes says. He is the person who knows this illness. They are like "cousins" and are often mixed together or forgotten by Doctors who do not know autoimmun illnesses.

When you get off drugs it will make the INR go either up or down. Important to make notes and if you selftest you should do it often.

Kerstin

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I wiould like to add: I understand that you only can think of your pain but the ANTICOAGULATION is important so if you are under an INR of perhaps 3.0 you should take LMWHeparin(Fragmin) in a shot to compensate for the low INR. You must not have a stroke.

Ask your Consultant asap to get you that if you are too low.

Exstremely important!

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Hi, is your diagnosed for pain by a specialist? Is it possible it could be another immune disease, like sjrogens?

You need to see your APS specialist asap, as you shouldnt be in so much pain & should be enjoying your baby!

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Him, I've never thought about that. I know I have some symptoms of lupus but tested negative.

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There isn't a single blood test for SLE. Blood tests can and do change. Additionally, there is sero-negative SLE. About 25% of patients with lupus also have Hughes Syndrome. Please see your specialist or at least, call him/her on the phone.

With good wishes,

Ros

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I struggled with hip arthritis for years. The pain was not confined to the hip joint, but would radiate around to the small of my back. It was bad. Physical therapy allowed me to postpone the hip replacement surgery for 10 years until I was 57.

I did notice that my pain fluctuated with my INR levels – a higher INR meant less pain. no doctor ever agreed with me, but my theory then and now is that since the immune system is programmed to concentrate on areas of inflammation and since my hip was inflamed -- thats where my APLS was causing problems. Hence, the higher the INR the lower the pain.

Good luck. and you might get physical therapy a try.

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