Sticky Blood-Hughes Syndrome Support
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I understand that APS can cause tiredness but has anyone found anything that helps?

My husband has had iron tests and put on iron tablets as surgery risky with being on warfarin but still the extreme tiredness is now really effecting his quality of life and I do t know where to go next. We are due back at docs In a couple of weeks and wanted to go back with, can we try something new as currently nothing is working! He can sleep around the clock most days and I try to motivate him with things but everything is too much effort.

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Gosh I know that feeling, hopefully once the iron medication gets into his system he will feel a little better.

What surgery is he expecting, Mary would also ask about his thyroid, I have depression too which doesn't help

I keep telling myself to go to bed in the afternoon for a nap instead of falling asleep on the couch

Good luck

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Sorry you also feeling this tired. The iron levels are up now but will mention thyroid on our next visit in a couple of weeks.

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I too take Warfarin and Iron, slept last night 11- 8am came downstairs for the dogs, laid on the sofa and slept till 11am that's pretty much my normal routine and I'll still manage to fall asleep watching tv. Tbh I thought it was the Morphine making me sleep so much because I didn't sleep this much before taking it but I did feel much more tired.

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Thank you but I'm confused about the morphine do you take this seperatly for pain?

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I take quite a high dose of Morphine twice daily for pain from my disintegrating knees. Morphine is known for causing drowsiness.

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Is he on hydroxychloroquine

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No can that be something that makes worse or i improve tiredness?

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It seems to be prescribed to many of us and assuming we tolerate it (can upset the stomach) it really helps with fatigue and pain. It has been a miracle drug for me

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I'm going to mention it on our next visit in 12 days thank you.

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Hi,

I read you previous post to know a little more about your situation.

As i understand you husband has been diagnosed with HS/APS and is on Warfarin.

One time they tested his antibodies and they were zero. That happens for some of us from time to time but we still have our illness and must NEVER stop anticoagulation (in his case Warfarin) even if the Doctors do not know this illness well enough to know that zeronegative antibodies appear from time to time for some of us. Do not let them stop his anticoagulation!

I do not know where you live but I should suggest you try to find a Specialist of autoimmun illnesses who has had patients like your husband before.

As I am not medical trained I will not comment on the iron.

I wonder what therapeutic level of INR he is on. I read that he had 3 strokes earlier so I guess he should be on the higher level of anticoagulation. I need an INR of at least 3.5 otherwise I feel bad and get the neurological symptoms back. I feel best at an INR of 4.0 and selftest to keep it steady at that number.

Best wishes to you and your husband!

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Thank you for your interest which is rare due to as you say ignorance of the condition. It was on our visit to see our local specialist that the marginal reading for APS was given and he was dismissed! His iron was found to be low on resent investigations for the extreme tiredness but that has been rectified with meds so that should not be the reason. Its a case of not knowing where to turn next or suggest to our GP as they said depression but that medication. Made no difference so taken off unnecessary med for that. He will fall to sleep anywhere and even during putting something on to cook which is making him less Independent. So just wondered if we had missed anything with APS symptoms which medics are saying not shown on last test but don't want to stop warfarin to do another for obvious reasons. I will see if any different with INR reading but they also refused self testing at docs due to cost of tabs. Again thank you for reading and caring.

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The Specialist of autoimmun illnesses knows that other autoimmun illnesses go hand in hand with APS and such a Doctor (usually a Rheumatologist or Hematologist) knows to give him the correct bloodtests when he or she hears his symptoms.

Thyroidea, Sjögrens, APS and also SLE are connected to APS.

I do suggest you help him to look for this Specialist. Where do you live? If you live in England there is some Specialists at "Pinned post" at the right hand.

I talk here from own experience on this site ( 6 years) that patients can go for years feeling so very bad and go on having PEs and strokes etc, until they find a Specialist who knows how to treat them. There are very very few of them.

He can be glad to have you to help him. Read also "Sticky Blood Explained" by Kay Thackray.

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I have recorded a couple of Haemotologist's from the list to mention to our doctor on our next visit on 13/2. We Did try to see one of the others at city rd hospital but only got into the clinic and never saw her and was not impressed with who we had from her team. Previous posts might explain so we shan't be trying that one again as I knew more about APS than the side kick and I know very little. Thank you for giving us some hope again.

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If you look back over my posts and replys you can find a recap of my experience in more detail. But basically, I was constantly tired, unable to concentrate enough to even read a short story, sleeping 12 hours a night plus 2 naps a day —and then i went gluten free, and everything changed. Fast. AND, subsequent blood tests showed that I was no longer anemic (had been since age 4) and most — not all — of blood values associated with inflammation and autoimmunity had dropped from “scary” to what one hematologist called “boring.” (Sometimes its good to be “boring.”)

And thats when I dug into functional medicine to find out why a simple change in diet resulted in such drastic metabolic changes. I think those functional med doctors are on to something.

You might try gluten free for a month or 2 and see if that helps. Other major food allergens which inflame autoimmunity and can breach the blood/gut AND blood/brain barriers include soy, and dairy. But some of us have sensitivities to more obscure foods. After going on a detox/elimination diet suggested by Cleveland Clinic last year I find that I am allergic to . . . cashews. Yes, cashews. And I used to eat them all the time. Who’d have thought?

I have no idea what functional medicine resources are availabel in the UK — and they are scarce enough in the States. But you might google about and see if you can find a FM practitioner or nutritionist. If you change your diet by eliminating or adding, be sure and have your APS doc on board so you can alter APS meds as needed. But — another “what the....?” event: I upped my high vitamin K leafy greens from 1 a day to 4-6. My warfarin dose was rasied to accomodate, but my asymptomatic INR range has fallen from 3.5 down to 1.7. I assume this iis due to less inflammation and functional and happy gut bacteria. My blood values have become even more boring. YEAH!

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Hello Gina, Who are you working w/ @ Cleveland Clinic for APS? I'm thinking about the Functional medicine program there.

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Dr. Kharbat.

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Sorry to hear about this, firstly if Iron, B12, and D are low the tiredness will be extreme, also if the Thyroid function is low, this will not help. Unfortunately usually the doctors and clinics only do the TSH, when I test I do them privately and do a lot, since treating my Thyroid my tiredness is less extreme. Many also take Plaquenil for fatigue. It did not suit me due to my mix of disease, however it suits my daughter very well. MaryF

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I've been taking a NOAC since Nov 2014. First Xarelto and then switched to Eliquis 2.5mg twice a day since. This was following an episode of DVT in my leg and multiple clots in my lungs. During that period I started experiencing episodes of extreme fatigue along with a sense of cognitive fog. Visits to the doctor didn't come up with any answers.

Last spring I started taking 100MG of COQ 10 once per day and the problem went away. Two friends of mine were experiencing extreme fatigue as well and tried this and found relief. I should add that all three of us are male in our mid to late 60's. One of my friends is also taking Eliquis for life and the other doesn't have a known clotting issue.

If he tries this let me offer one bit of advice. Take the dose in the morning rather than the evening. Both of my friends initially took it at night and complained of wakefulness which went away when they took it in the morning.

I know that COQ 10 is often recommended for those that take statins, however, I don't take a statin and never have.

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Thank you for taking the time to reply I will do a bit of research and mention to doc on Tuesday. Some doctor friends are suggesting severe depression and I'm not sure so give anything ago to rule things out.

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Hi jcgc,

I have read a little and found that you may have had a clot in the eye. You may have some symptoms of neurological symptoms of our illness and perhaps should be on Warfarin and not the oral drugs. They are not approved as far as I know here in Sweden for neurological issues and also perhaps heart-issues as they need a high INR around 4.0.

I am on Warfarin, have had a lot of neurological symptoms incl micro-tromboses (emboli) and I am 73 years old, selftest with an INR of 4.0 and are triplepositive incl Lupus anticoagulant with very high titres. I had a lot of symptoms from my right eye and severe balance-issues and ear-issues. The "fog" you mention is also a neurological symptom of APS.

Warfarin was my lifesaver and the symptoms disappeared when I was finally well and stable anticoagulated.

I know we need a Specialist of autoimmun illnesses who has had patients like us with very tricky symptoms but who is the man or woman who is able to finally treat us. Very difficult to find as there are so rare of them.

I had PEs but they were not seen on a Scan as too tiny but do harm anyway. Today I have Pulmonary Hypertension and 2 leaking heartvalves. Some of us have micro-emboli and that can make it difficult to find and diagnose.

I hope you do not have high bloodpressure. In that case try to get it down. That is a form of symptom of APS as I now know. I feel quite ok today with selftesting on Warfarin and Specialists looking after me!

I felt that I had to write this to you. We do not bleed from APS but clot a lot.

Take care

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Yes. Exercise such as Pilates. Magnesium selenium and zinc 30 for a start. And to know it will pass. Good to have an exercise regime u can stick to Good luck. Z

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