Does anyone on here have a normal day when they actually don't have any symptoms ? I know it's early days 2 months on Warafrin but it's really getting me down . I just want to be able to go out like used to but I'm either to dizzy , weakness , nausea , or exhausted 😥 This has been going on since February 2015 😡
Feeling normal : Does anyone on here... - Hughes Syndrome A...
Feeling normal
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amy1808
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Hi, I wonder what your Specialist said at your last appoinment on May 9th?
I can tell you that I can feel almost normal (a little ringing in the ears from my Tinnitus, but I am 72 and what can you expect with some heart- and bloodpressure-drugs I use) I feel fine as long as my INR behaves and keeps over an INR of 3.5 that is.
Exercise and food is important and the most important a Specialist who works well with you and who you can talk to and who knows what to look for re symptoms.
I think you need a higher and also stable INR, but that is me. For me anticoagualation is number 1 priority. Perhaps you have other illnesses besides APS that have to be taken into consideration, I only know of APS.
Best wishes and tell us how it goes for you please! We learn from eachother.
Kerstin
Hi , he spent a longvtime with me on Monday , sending me for a MRA to see if I have a narrowing artery somewhere on my left side as it is my left side that goes weak . He was quite concerned and sending me to see a neurologist as well , he won't put my Warafrin up as it was 3.5 , I did tell him I did feel better at 3.8 but he wouldn't budge . I bought myself a anti coagulant self test , so far it's gone down to 2.9 and highest 3.5 . I eat very healthy and excersise when I'm not too tired . Any tips on diet and getting my NRI up . X
Glad to hear that your consultant is being so detailed with you in terms of care. MaryF
As Swedish is my language I wonder if I have misunderstood that you have bought yourself a machine to selftest?
You must always follow the advice from the Doctor because he has the responsibility for you. If you suddenly selftest you must first tell your doctor and also doublecheque in the vein at a lab first to know that the difference is always the same. When I use my machine at home the number is always much higher that at the lab in the vein at the hospital.
Please tell me if you selftest?
Kerstin
I do but I go to clinic every week and I don't mess around with my tablets x
For me the value on my machine is totally different to the value that is important and that is the value in the vein at the lab in the hopsital and those two tests must be taken the same day within a couple of hours to be reliable.
Are you Lupus Anticoagulant then there can be a bigger differens between the REAL INR-value in the vein and your machine-value. My machine-value is 0,6 - 1.0 higher that the real INR at the lab in the vein.
I am not saying you mess around with your tablets but it is important that you get the right result and then you must doublecheque like I said. At least we do that in Sweden.
The only way to get the INR up is to eat less green vegs or take more Warfarin. But that is something you should discuss with you Specialist of APS.
Kerstin
They never take. Vein blood at the clinic only finger prick , felt awful again last night , had to pull over whilst driving as my head went all funny . Did my NRI when I got in and it was 2.7 , lowest it's ever been . I don't eat leafy green any more and I eat so healthy . It's so disheartening as I feel like I'm going backwards now x
Hi Amy
Yes, I feel normal most days since I have been on Fragmin instead of Warfarin.
Davex
Sorry to hear you're not feeling great.
I was diagnosed in February and now feel almost normal most of the time. I get a tingly tongue, livedo on my palms and if I overdo it I get painful hips from avascular necrosis I'm told!
However my symptoms are very minor and seem to be lessening as the months pass.
Hope you feel better soon x
MaryFAdministrator
Hi, it is possible go get significantly better, I know I always say this, but have you had everything else checked, ie Vitamin D, B12 and Iron, plus Thyroid, as if any of this is not right you will not feel as well as you could do. MaryF
Hi Mary ,I don't have a thyroid gland got cancer in it 1996 so they removed the whole thing ,I'm pretty tired , so iron could be a possibility . I do take vitamins , bit k free of course . Seem to be piling weight on as well 😕X
It may well be that your thyroid medication is not working, unfortunately the NHS and often even privately they rely on the TSH test which is notoriously in my opinion useless. I take natural desiccated thyroid which I am monitored on, and I also do these tests regularly via a finger prick service: thyroiduk.org.uk/tuk/testin...
Levo thyroxine is chemical T4 and it relies on the body to convert to T3, hence why it is good to have a reverse T3 test, which most labs refuse to do, which is why I do my privately.
A genetic test called a D102 tells which people can't convert T4 into T3 Do join Thyroid UK for the best advice in the UK. If you are on iron, now or in the future, you need to leave four hours either side of your thyroid medication other wise your body will not uptake it, and actually if your iron is low in the first place, the thyroid gland struggles to take up the medication. B12 can be dragged down with low iron, and low D will increase the feeling of lethargy.
TUK have a forum on here, many of their members are on here and vice versa. MaryF
Do you know why eliquis isn't used more? Seems that eliquis is the new drug to replace warfarin and it does not require the INR chking. But seems warfarin is still the go to. Is it because it's just known? Just curious.
I would be very happy to have a day when I just felt as good as before warfarin (actually strictly speaking the first week on it was ok - but that was at INR 1.3), from there you know if you have one day you can have more, but I have waited 6 months for it and still waiting. It may be my body is still getting used to it, or this is the new normal. Whatever, there is no way back off warfarin and no alternative for me, at least that is what I have been told.
However, I do have bad and worse days, and have had some improvements, which gives me hope.
I had around 2-3 months of terrible fatigue, weakness, nausea and abdominal pain / gut problems. These largely resolved when I moved the warfarin dose to earlier in the day, based on advice I found elsewhere on the net. You can only move the dose time a little each day - was going to move to morning but at the moment I am kind of stuck at mid-afternoon, but it has made a big difference. The clinics tell you to take it evening but that is _just_ so they can adjust the dose same day, it might not be when it is best for you to take it. 12hrs or so delay in adjusting a dose with 20-40hr half life is really neither here nor there. It hasn't resolved all my problems that started with warfarin, and it might no make any difference for you - we are all different - but might be worth a try.
May I ask if your Specialist put you on Warfarin on symptoms or on APS-antibodies?
You are the first person I have heard that feel worse after starting Warfarin! What therapeutic level do you have? Mine is an INR of 3.2 - 3.8 and I selftest every second day.
Best wishes from Kerstin in Stockholm
I had a TIA and scans showed other previous infarcts. Two neurologists said scans typical of APS-induced events. Tested positive for LA on several tests over 10-month period. I had no other APS symptoms, before warfarin. I'm on 2-3 INR currently, and not allowed to self test. From the test results I have (about every 2 weeks) I feel consistently worse at higher INR, so not convinced what I have is APS symptoms at all.
We have always talked about here that the Neurologists do not know what APS is about - too thick blood! I hope you did the Lupus Anticoagulant-tests before Warfarin because after starting Warfarin the tests are not reliable.
I also have LA and that can make the blood-tests for INR difficult for some individuals with APS.
Hope you have an APS-Doctor to see now. That is exstremely important! If Warfarin in not ok you should have some other anticoagulation drug like Fragminshots perhaps. Some people with Lupus and Sjögrens also take Plaquenil so the right Doctor should be able to help you feel better! With the right Doctor you could explain the situation and get the right treatment. You may have other autoimmun illnesses also which is common and therefor a Rheumatologist should be perfect. So very few Doctors around the world know about APS.
Stay with us here and read as much as you can on the hughes-syndrome.org/signs & symtoms (hope I did it right).
There is a book by Kay Thackray I always speak of: "Sticky Blood Explained". She has APS and writes about the symptoms and how it is to live with this illness. Prof Graham Hughes has also written several good books and you can find them on the charity website here.
Kerstin in Stockholm
I've been diagnosed almost 2 years, been on warfarin 20 months and hydroxychloroquine a year.
I'm a million times better than I was on the lead up to diagnosis. Some things have improved and some things still remain.
On the upside my migraines have gone from chronic to perhaps every 6-8 weeks and not as severe. My joint pain, brain fog, numbness and tingling, forgetfulness is also so so much better.
My downside are headaches, I still get them in clusters but not severe. Periods of fatigue but again not as extreme as before.
I defiantly follow a pattern of flares but then have been diagnosed with a lupus like syndrome so that explains a lots of it and I always get a return of some symptoms on the lead up to my period.
I guess it's one of those things that is unique to everyone. I'll keep everything crossed that things begin to improve for you x
I'm also worse on the lead up to my period , just had to pull over tonight driving home , my head went , lips went blue and couldn't even think what a round abou was called , scary stuff . Had to be rescued 🙈I feel fine now but just done a self test and my NRI is down to 2.7 , no wonder I felt crap . I just can't seem to keep it up in the 3.5 bracket 😡 Hard work is this Warafrin x
Normal what's that ... The aches and pains s are getting worse and the exhaustion is now affecting g my life . I have an appt with gp this week . I need referring to someone or more tests doing . All bloods are on normal range at the moment so will see what he decides . Could feel quite down with it all
Estrogens tend to amplify autoimmune inflammatory responses. I know this very well as before menopause I was always worse on the days before my period. You might keep a calandar chart that includes your cycle info, srymptoms and INR. ( as well as any thyroid testing info.) It is possible that such data could point to additional endocrine imbalances.
Omg! I too find my flare ups correspond to being the worst right before my pd. Funny most women dread the pd, I look forward to it because that is when I feel my best. Have you been able to find any research on this connection?
i used to see an Alternative med doc and he pointed this connection out to me. he did put me on a topical bio identical progesterone once-- and that stuff was magic! i felt wonderful while on it. but that same doc changed my script to a oral formulation whuch included estrogens and --nah. didnt help and made me feel worse. This alternative med doc refused to pay any mind to my observations comparing the subjective efficacy of the 2hormone compounds he had prescribed, so I left practice, which then shut down a few months later.
Hi honey! I'm sorry ur not feeling well! I was DX'd with APS in October after loosing my left leg to the disease! Had been treated 13 years for another Y sludgy blood disease called Polycythemia Vera, by Hemotologist and he didn't detect my disease in all those years, till I lost my leg! He wants my INR between 2&3 and I've yet to STABELIZE! I recently told him my issues and he said he'd think about keepin my INR higher, but last time my INR was 2.17 and he was too busy to talk to me and said that was good and msg was to stay with what I'm doin! I live on Long Island, New York and the only APS specialist here is now doing research! I've been to a Rheumatologist in NYC whom was highly recommended for APS SPECIALIST!!! He disagreed with many of Dr. Hughes's findings! Hope I'm allowed to say that without being edited! I've gotten Sjogrens and RA! Not surprised cuz I had Juvinile Rheumatoid Arthritis as a child! Please be patient, once you are ANTICOAGULATED you feel great, because my INR went up to 3.7 twice and I never felt better! Also read Sticky Blood, By Kay Thackray! It's very informative and written about 10 years ago by someone who has it! It's helped me to understand many things and has helped me deal with my family! Please try Gluten Free Diet! Even tho I don't have celiac disease, they reccomend GF Diet! I was I it and did feel better! I went off due to unusual circumstances! I couldn't afford the high priced food needed, but will go back soon cuz it works! There will be a light at the end of tunnel for you! Please stay on this forum and Think Positive! Most of us have had to fight for our healthcare ourselves because a lot of doctors just don't know enuf! I test all my docs wen they tell me they know of APS! They have failed miserably here on Long Island! I wish u the best and please read Sticky Blood, By Kay Thackray!!! Ask Kirsten as she is an expert on this and The Admins are extremely helpful and very knowledgeable! I have a big mout and what on my lung is on my younger! Lol... I'm a fighter, I'm just tired of docs for now and need a well deserved break from their negativity and lack of knowledge of APS! Godspeed!!!
I have come to accept I have a new normal. I've been having symptoms for about 10 years. It got really bad about two years ago and I had to leave my job as a physicis engineer for a space company. In the last two years I've seen a lot of specialists and eventually ended up in Dr Schofield's (leading APS research DR) office where I was dx'd with APS and dysautonomia (when the autonomic nervous system doesn't work).
My new normal involves random symptoms of being dizzy with difficulty walking, nauseous, fatigued, muscle aches and pains, tingling in hands and feet, vision issues, heart palpitations, severe cognitive issues and migraines. It turns out the dysautonomia (which is a result of having autoimmune disease, in my case APS) has been very difficult to learn to live with.
I am currently on Eliquis, aspirin, miodrine and a lot of vitamins - vit d, b2, magnesium, pro-botics, fiber supplement, and biotin. Vitamins have really made a huge difference! The eliquis made a huge difference (no INR checking). I also follow a mostly vegetarian , anti-inflamitory diet. I also do yoga several times a week and a cardio workout. These all keep my head above water and symptoms manageable.
With my cognitive issues being so bad and vision problems I may never be able to do my job again. This has been a harsh reality to face. But I am in my 40's so a second career is not unheard of. This is my new normal.
Your symptoms sound familiar, maybe you should have the skin biopsy done to rule out small fiber/sensory nerve damage and/or tilt table test (dysautonomia). Here is an article Dr Schofield wrote w/Dr Hugh's on the connection of APS and dysautonomia. Also a link to learn about dysautonomia.
Finding a new normal can be very difficult. It is important you find the right doctors, the right med/vit combo and even get a good counselor to talk too. This is tough stuff esp if you have more than one disease to manage. Best of luck!
ncbi.nlm.nih.gov/pubmed/245...
dysautonomiainternational.o...
Hi.
May I ask you please, as I have read a little of what you have written, if you have been on Warfarin and had no help from it with the neurological symptoms like dizziness and vision-problems? Dysautonomia could perhaps be the same thing as neurological symptoms?
You are now on an oral drug for APS and I wonder if you still have these problems and if they became worse? Are you primary APS or do you have other autoimmun illnesses. Do you have all three antibodies positive?
Have you read "Sticky Blood Explained"?
It should be fantastic when we can take a pill to prevent us from the negative effects of clots, DVTs, microembolies etc etc. But are we there yet? Warfarin when it is used as it should be, is a fantastic drug to prevent all the different symptoms from different organs and i have read myself when Prof Hughes says how surprised he is that Warfarin works so well on so many symptoms. I have noticed how effective it has been on myself.
Just curious . .......would like to hear your opinion.
Best wishes from Kerstin in Stockholm
Hi. I was interested in your reply as, in addition to Lupus and APS, I was been diagnosed with a form of dysautonomia just last year. Specifically I have neurally mediated hypotension when my bp just plummets for a few seconds. I have referred to the dysautonomiainternational website you mention but I wonder if there are any 'top tips' you might have for helping yourself. At present I am drinking more water, using compression stockings, have raised my bed head, am trying to exercise regularly (within my limits), amongst other things. But it would be great to hear if there is anything else you have found that is really helpful. Best wishes
I have found the best thing for me with all these different dx's have been the following:
1. at least gallon of water a day (3Liters)
2. Increase salt to dr recommendation (I'm between 3 -10 grams). I drink salt water a few times a day -yek, but it helps)
3. slow out of bed in the morning /drink 16oz of water before standing/take Eliquis, asprin and Miodrine before out of bed
4. maintain vit regiment - it has really helped!
4a. Vit D - even in the Mile High city, I don't get enough vit D!
4b. magnesium and B2 for migraines
4c. pro-botic - lots of studies that show the relationship of a healthy gut and a happy head and immune system
4d. fish oil (omega 3 and 6) and flax seed oil (ck w/dr first as this will thin the blood as well)
4c. multi vit
4d. Biotin for the hair loss and brittle hair
4e. Fiber supplement
5. exercise at least 10-15 min a day and/or get at least 3000 steps. Follow the Levine program (cardio program that works for some dysatunomia patients)
6. YOGA! keeps my head clear and my blood moving and my aches to a less achy spot.
I also have found eating less meat, but not no-meat, diet helps. I stay away from artificial sweetners and gateraide only because those are loaded with what I would call crap ingredients. And frankly I've got enough problems without adding artificial into my body.
I also wear compression socks all winter. The Miodrine meds work okay - not totally, but may be worth looking into. Drinking enough water is really key for a lot of reasons. And exercising and strengthening while I feel well totally helps feel a little better when I don't feel well.
The Dysautonomia International site is great. I am hoping their conference will be equally as informative. Maybe these sites will help: potsuk.org/
mc.vanderbilt.edu/root/vumc...
I have finally found a good APS, Neuro Cardio and GP team. That was key as well. There are so many things I do daily to manage the team of symptoms...I don't shower before 8am cause the heat kills me.
Does this help?
Thanks so much! It's really good of you to reply, and in such detail. I hadn't heard of the 'Mile High City' and looking it up see that you are in Denver. The pictures on Wikipedia look great - lucky you! I'm in the west of Scotland, just fab on a sunny day, but dreich, as we say, quite a bit of the time!
Drinking more has certainly helped me. I have to take my hat off to you on the salt water front; you're a brave woman! I haven't heard of the Levine programme, so thank you - I'll look it up. And thanks also for the link to Vanderbilt. I refer to the POTSUK site quite a bit but hadn't come across the Vanderbilt one. But it also helps to hear from people like you. Here in Scotland, and probably across the UK, there is very little awareness of dysautonomia. Most GPs, and indeed docs, simply look blank - the term 'neurally mediated hypotension' doesn't mean anything to them. As for dysautonomia being comorbid with various chronic conditions, that's really a new one for them! And there is no comprehension of the disabling effect of POTS, NMH, etc. I imagine there are many people with these conditions in the UK who are simply unaware of them and that they have them.
Here in the US the awareness is limited as well. I got so lucky with both my neurologist and APS specialist. I guess it's up to us to spread the awareness. Dysautonomia results from so many diseases and effects so many people more research really needs to be done/supported to find better management.
Hello Lure2 -
Let me know if I miss something or don't answer clearly. I have never been on Warfarin. Eliquis and aspirin seem to work well for me. I tested positive for two of the antibodies. I am APS primary. I have high thyroid antibodies, but normal TSH tests, so we are watching that...I have read Sticky Blood and highly recommend it, even with all the info on Internet, it is great book.
The dysautonomia is a failure of autonomic nervous system. It is responsible for regulating blood pressure and heart rate. My blood pressure is very low and does not increase when I stand or bend over. In addition the heart only 1/2fills with blood (since it's not being pumped fully) before sending out the blood. Therefore not enough blood is pumped to the head. Thus results in racing heart rate and dizziness. Sometimes though, the heart will race for no reason at all which us very uncomfortable. Working with cardiologist to find the right med to manage the currently. This form of dysautonomia is called POTS.
I also have two other types of dysautonomia. The way it's been explained to me is that as an autoimmune attack causes damage to the nerves. My skin biopsy showed sensory and small fiber nerve damage. So even if I manage the APS w/thinners, the nerves will continue to get damaged via the autoimmune process. I have a neurologist and cardiologist t for my dysautonomia.
But yes, dysautonomia is a neurological disorder. Dysautonomia International is hosting their annual meeting in DC this year.
Oh and to answer your question about vision...your autonomic nervous system controls the dilation of the pupils amongst other things. I have a reduced field-of-view and what's called convergence insufficiency. I am extremely sensitive to light. I get double vision and blurred vision. I also get severe nausea from eye fatigue very easily. So working on computer is a problem.
I am curious about warfarin....could it help with some of the dysautonomia? Worth exploring, for sure. The eliquis really helped with the cognitive issues and severe migraines. So I'm hesitant to mess with a good thing. hummm......
Did I address the discussion topic or just ramble? -Jeana, Colorado
I am new to this site and curious. If you are in the US, how did you get them to prescribe the Eliquis? I am also in the US and my Dr won't prescribed because he sits there is no proof it is safe for APS. Do you know something I am unaware of? If so please share because I hate the leafy green restrictions. Thank you
Sorry, I really can't address that. I was not the driver to be prescribed Eliquis, my Dr was. I have shared two links to her research above - she is very knowledgeable about APS.
"MaryF" admin, has a list of APS Dr's. You might want to find a Dr from there if you question your current Dr's recommendations for your specific symptoms. Dr schofield is at UCHealth in Colorado if that helps. I know there is at least a 6month wait list from last I heard.
I wish you the best of luck.
Thank you for that very interesting answer. I thought you had tried Warfarin because you wrote of the huge difference with Elquis and no INR checking.
I found Sticky Blood Explained very detailed as to explaining Kays different eye-symptoms which were exactly the same as those I experienced before I was on Warfarin. As I started Warfarin and took 3 tablets I could read again and no doublevison etc. A miracle it was! Slowly as I started to selftest the memory-issues and vertigo disappeared.
I had very high bloodpressure in attacks before Warfarin. I had Carpaltunnelsyndrom and a Neurologist wanted to operate but I did not want to operate and after Warfarin the carpaltunnelsyndrom disappeared. I have today Pulmonary Hypertension and leaking heartvalves. I feel ok as I selftest with a rather high INR between 3.2 - 3.8.
I had several Neurologist to begin with but they did not understand APS. Now I have a Rheumatologist, Hematologist and a Cardiologist.
I am operated for Hyperparathyroidea.
Good Luck and thank you for your answer!
Kerstin
I'm on one of the new drugs now but apart from being tired alot. Feel fine but always was ok on warfarin too. I think working makes me tired. But if I didn't have work would be restless. I always walked. Every day 4/5 miles. Fresh air made me tired but always felt good. Borrow a dog get lots of air. Wish you good health x
Hi Amy, I have to say that my symptoms haven't improved since starting Warfarin just over a year ago, apart from confusion and forgetfulness. I've since also been diagnosed with lupus and have been having seizures weekly, so fatigue is a constant. The hardest lesson is learning to pace yourself. If you have something to do later in the day rest beforehand. If my head is playing up then I won't drive at all - better safe than sorry! Hope you can get your INR stable, the fogginess will lift, at least 😊
Just chipping in to say I feel "normal" most days. Some days I am fuzzy/tired. But hang in there, things will improve.
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