Sticky Blood-Hughes Syndrome Support

Wracked w pain all over at least once a month

I have APS n arthritis that was very manageable until this winter when hip and back pain started occasionally. I started having episodes ?flares where I feel like my body is under attack and I feel pain all over. It almost feels like flu symptoms. I'm on plaquenil n warfarin. I was diagnosed 3 yrs ago after a stroke. I have a rheumatologist in NYC.where I live. She's a lupus specialist but Im thinking of going to see another specialist here because I think my APS has reached another level. Has anyone else gotten these types of "flares" with APS?

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Hi you flares could be for a number of reasons, but certainly you must check the levels of your vitamin D, B12 and Iron, plus also a thyroid panel, as any of these being out of kilter would worsen flares, and perhaps have a medicine review also. MaryF

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Thank you so much Mary. I see my rheumatologist in late March, but someone on this site recommended Dr. Doruk Erkan at the Hospital for Special Surgery and if he takes my insurance, I'm going to him for a 2nd opinion. I'll ask for B12 and iron test. Have a good day.

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and vitamin D, if that is low you will feel far worse. MaryF

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He is supposed to be excellent. My sister went to him. He does a lot of research. Hope you get some help. I'm a fellow New Yorker with APS.

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Where do you live and are you going to HSS too? I'm in upper Manhattan and have been going to Columbia Presbyterian Hospital and see Dr. Anca Askanase as a rheumatologist. She's the Director of the Lupus Program there and very good but still want to go to HSS for a 2nd opinion and for more info.

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I live in Babylon on the south shore of Long Island. My sister went HSS. not me. I only tested positive on blood tests no clots. Taking aspirin for now. My sister is much more complicated.

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In July my daughter moved fr Kings Park LI to Apex NC near Raleigh. I hope your APS remains the way it is and I hope your sister is ok.

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Thanks stay well

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Mary How much B12 should I be taking in your opinion. I take 500 mcg a day and I know since I started it definitely helps any anxiety. At last test my vitamin D level was 31.7. In your opinion, how much vitamin D should I take. My multivitamin has about 600 iu per day.

My internist and rheumatologist don't give information re vitamins. I'm so grateful for this site. It got me through my first year of APS with so much info that I wasn't getting from MD's. All they know is that APS is rare!

By the way, my daughter just moved to North Carolina near Raleigh. Are there any rheumatologists recommended there that you know of? Maybe I should make that a separate post.

Thank you so much again.

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My Mom had to have B12 shots as there was concern from her doctor as to her diseased guts ability to digest oral B 12.

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I take b12 but I don't think I take enough. I take 500 mcgs. It's definitely helped with anxiety for sure. I have to find out how much I should be taking. Maybe more will help. I think as we age, B12 is harder to absorb.

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I can only speak from personal experience....I have not had a stroke but TIA's and I was on plaquenil and warfarin but fatigue and flu like symptoms started worsening. My Rheumotoligst increased my dosage from 400mg of plaquenil to 600 mg and that has made all the difference. On this dosage I get my eyes checked every 6 months.

One other find for me that may seem small but it's been so helpful is I drink a 32oz bottle of alkaline water each morning before I start my day. I continue drinking water throughout the day. Dehydration is a problem with Lupus and possibly other autoimmune diseases. I can feel super fatigued and sick and more often than not if I drink a large glass of water, I feel better. Hope this helps.

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It helps a lot. I may need to increase my plaquenil so when I see rheumotolgist in March I'll make sure I'm really ready w my symptoms and maybe making a list will help. Sometimes the visit goes so fast I forget to tell her things. Thank you so much.

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Hi Lorretta Sorry you are feeling so bad. Prof Hughes friend and contact in NY is Prof Michael Lochshin at the Hospital of Special Surgery. Perhaps give him a go. Your Vit D is much too low and I think you need to be on a loading dose of something like 20,000iu taken 3 x a day for 3 months and then go back to your normal supplementation. Hopefully Prof Lochshin can arrange that. Id also get your thyroid tested and Ferritin as if thats low thyroid won't work either. Also B12 as its amazing what that will do if its low!

Hope thats given you some positive things to work with.

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Thank you so much. Another rung to climb and learning more. I didn't realize Vit D was that important with APS. Thyroid has to be tested and don't know anything about Ferritin but will bring all this info to next md appt. I see my regular rheumatologist on March 22nd then will make an appt with Dr. Lochshin at HSS and bring all my blood test results. Thank you so much again you've definitely given me some positive things to work with.

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Vit D deficiency can be a risk factor for clotting in Hughes Syndrome. Have a read of this link:

ard.bmj.com/content/70/1/14...

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Thank--great link. Will question my doctor re vitamin D levels.

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I have these symptoms but also have lupus and Jorgensen. I'm told they are under control at the moment but my inr is so up and down and not high enough that I'm assuming my symptoms are due to APS. I hope u feel better soon. X

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What is Jorgensen?

Kerstin in Stockholm

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I hope we can both find an answer. I have to learn not to overdo everything and rest when I'm in pain and continue to exercise and think positively and eat healthy. Take care

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It's so difficult and debilitating but we have to keep trying 💋

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