New to Hughes Syndrome

Hello. I am new to the site. I have been sick for couple year and kept getting worse. My symptoms was leg pain, confusion, memory problems, avasular nerchrosis, swollen liver, lose of fingernails, thrombosis plus ran fever for about 6 months. A rheumatologist fiquired out it was Hughes in June. I am on 7.5 warafin, 200 plaquenil 2x daily, 30 mg Cymbalta for nerve pain. Plaquenil seemed to break my fever, and starting warafin I got better. I could hardly get out of bed and was really not all there before the warafin. It seems the higher my INR the better I feel. I am able to work some now with the warafin. I still don't feel normal, my liver and spleen swell, still some memory and thinking issues and seem to have a lot of gas in my stomach like someone pumped air in there. I'm 43 male with 3 small kids so I need to try to get better than I am. Any recommendations would be greatly appreciate. Should I be seeing a different type of doctor, anything that has helped someone with my symptoms.

33 Replies

oldestnewest
  • R u seeing a specialist for APS? Where r u from? You have picked a great place to get lots of information! It's said people with APS shy have an interest between 3.5-4! The higher the one the better we feel! Memory and thinking issues seem to be prominent with us, even when one is higher! It's better when our blood is anticoaguleted, but for me still a problem! I'm sure u will get many more responses! Welcome to this most informative place! I'm sorry u have these issues!!! GODSPEED

  • I am seeing a rheumatologist. He said I am the only patient he has like me and it was pure luck he found it but I think he was just saying that because he was really trying to find out what wrong. He said this is usually diagnosed in Cleveland. I didn't know if I should be seeing different type of doctor too. I live in Louisiana so I don't know if there is a specialist in this area and what type of dr would specialize in Hughes. I do notice when my INR around 4 I can think better. I actually cut myself bad when is was around 4 and I really didn't bleed much. Is this normal. Thank you for help

  • Welcome.Sorry you have been so bad but sounds like you have improved a lot too since your diagnosis . Well done to the rheumatologist for that.Are you still having other tests

  • He really spent a lot of time trying to fiquire it out. They are not running anymore tests, Just testing my INR. I just seeing if I should be doing more to try to get better or is this as good as I am going to get. Thank you for your response.

  • Hope you continue to improve as you have so much already.Try and eat healthy but not too much vitamin K as it alters your warfarin

  • Hello and welcome, your Rheumatologist has given you a diagnosis which is a start as many struggle to get one. The INR on the higher side making you feel better is pretty typical It is also important to check out what is going on with your vitamin D and B12 also and in some cases your Thyroid. Where are you located? You may need more detailed help. MaryF

  • It's been a long time to get diagnosed. He was stumped so we started going over all my heath problems I had in the passed so told him about My hip bone died in 2010 and that is what made him take an ex ray and my other hip was starting to die so that's when he tested me for Hughes. I am vitamin d deficiency so I take 2000u a day but do forget so I need to stay on top of it. I don't know if they tested me for b12. I am in Baton Rouge Louisiana. Do you know where I would look for more help. Thank you

  • Other members on here from the USA will help you, as there is some good localised knowledge on here regarding useful consultants, however your Rheumatologist perhaps would be open to more medical detail for help. There are names that can be contacted on here: apsaction.com/research

    ps if he tests your B12 get him to look at your iron also.

    MaryF

  • Hi, I am on Warfarin and selftest since 4 years. I have APS and live in Sweden. We need an Expert on this illness! I am lucky to have one but there are very few of them.

    I am also on an INR around 4 and feel good there. CONSTANCY in what you eat of green vegs is important and take a lot of test as our INR changes a lot, We have so very thick blood that many of us do not bleed at an INR of 4. But we are all different. I do not bleed at an INR of 4.0 either but I can imagine others here may do.

    If I were you I would not let my INR go much over an INR of 4. Try to test twice a week. There is a possibility that we can have bleed.

    Best wishes from Kerstin in Stockholm

  • Thank you, it only got up to over 4 that once. It seems to stay between 2.7 and 3.5 so I am going to see if the dr will work with me getting higher because he doesn't want it over 3.5.

  • Get an Expert and if you are going on Warfarin try to selftest if you can not test in a vein twice a week.

    It is important that the INR is steady and over 3.5 and only an Expert who knows APS dare to allow you to go over an INR of 3.5 There is a risques they take also. My Hematologist does not want me to have a bleed.

    I am on a therapeutic range between an INR of 3.5 - 4.0. I have all the three antibodies there are for APS and in high rate and that can make it more important to keep it steady but also more difficult especially if we have Lupus Anticoagulant.

    Also you could put a new question on our site for a name of a Specialist in Louisiana!

    Kerstin

  • Be careful about your INR getting too high. I successfully got my doctor to agree to a range of 2.5 - 4 only to get a very serious abdominal bleeding episode which put me into the hospital a few years ago. Since then, I am back to 2.5 - 3.5 and I try to stay on the low side of the range.

    I have been doing well on only Warfarin for over 15 years. I am now 52.

    Recently I have nerve pain in my upper back radiating to my left arm.

    Do you know what caused your nerve pain?

    What meds do you take for the pain and do they help?

    Jeanette - CA, USA

  • I have the same nerve pain. My doctor put me on cymbalta 20 then 30mg which helped. I did fracture a vertebra years ago and they originally thought the pain was from it and put me on pain pills which seemed to make the pain be more severe. I told the doctor that I thought it was making it worse and I think he thought I was crazy. I just quit taking anything then when they discovered the Hughes my doctor said the pain med would make the nerve pain worse. So he started me on cymbalta and Bacoflin for leg pain but I don't take it anymore.

  • I recently started Gabbapentin for the neuropathy. Seems to be working pretty well.

  • I am going to try to find an expert. Nothing against my rheumatologist because I am very greatful for him finding it but he did say I was the only one in his practice with my conditions. I did feel a lot better around 4 but I think it would hard for him to move me up. I had wondered if I should try to see a hematologist so I glad you mentioned about hematologist. I going to go to my dr next week and talk to him about seeing a hematologist. He was going to send me to a clinic in Cleveland but I was doing better but I hoping I can get better than I am now so I can work more and function better. I am greatful finding this site and the information I am getting. When you don't know much about Hughes and trying find out what wrong with me for so long I see some hope. My dr did tell me some about it but I really don't remember what he said.

  • What you need to say to your Dr is that if you continue to have symptoms then it's a bit like treating a diabetic with insulin that does not get better! You are simply not getting enough of whatever it is that you are using to thin your blood. It may be that you might have to use a anti platelet with warfarin like aspirin or clopidrogrel as that makes the platelets less sticky or until you get to your therapeutic range or if your INR drops below 3 you inject with LMW heparin.

    You may well have to travel to get to your nearest Hughes/Antiphospholipid Specialist but with your issues it would be worth it. What antibodies were you positive for BTW?

  • Thank you, that is good advice and I will say that to him. I going to try to find a specialist close or go ahead and go to the clinic in Cleveland. My dr said they had better luck there but I going to see what other say on the site. I just looked at my records on the internet but I can't find what antibodies I am positive too. At first they said I had lupus and APS but now he says I don't have lupus just Hughes syndrome. When my blood got around 4 they cut back my warafin and my INR went to 1.6 which I got pretty bad off. I wonder if a hemotologist would done more detailed blood work.

  • The problems with your hips are well documented in the literature. Also your stomach issues can be a form of stomach migraine especially if you get it around a hour after eating when extra blood supply is needed for digestion. Going GF is always a good idea if you have any autoimmune disease as it helps lower inflammation. What your Dr says about you not having Lupus makes me wonder if one of your positive tests was for the antibody Lupus Anticoagulant. Many people get very confused with this badly named test but it does NOT mean you have Lupus if you have a positive result! Much of what you are explaining seems to point to an unstable INR. It's very important to keep it in range. The brain does not work well with too sludgy blood which explains your symptoms. One thing you could do is work with your currant Dr to do a LMW heparin trial. That would mean coming off (bridging onto) warfarin to heparin for say a month to 6 weeks to see how symptoms go. If you get complete relief or are much better, then you have your answer. Many of us have had to do that including myself as sometimes warfarin does not suit everyone.

  • I going to try the GF. Never heard of that but just been reading about on the net and it seems that could be the problem. Yes that want it said about the anticoagulant on the lupus test. I didn't test positive for lupus but 2 of the criteria was there. Thanks, I have learned at tonight

  • Thanks, I will have try the gluten free. My liver,stomach swelling and gas I got before I started the warfarin. The closer to 4 INR the better I feel. I was lucky because I haven't had any strokes or heart attacks which he said I was lucky I haven't. Have you had any avasular necrosis. I had hipbone die and had surgery, then my finger snapped pulling a pull starter and wouldn't heal, then my other hip was starting to die but haven't had anymore problems with it since the .warafin.

  • I have been looking up on that gluten and that might be what causes my swelling. I appreciate it because I never thought of that. I eat alot of Gluten plus a vitamin d deffency and it said can be caused by autoimmune and the sicker I got the more my stomach swell. It seems I don't heal like I used too so I wonder your ligament not healing has something to do with it. I know when my finger snapped they couldn't get the ligament t stay attached

  • I am experiencing this right now. Have had an open wound on my hip for 18 months now. Finally getting it seen to by a wound clinic. They have some excellent alternatives to what you can buy at a chemist's or drugstore.

  • When we talk of a "Specialist" of APS it is a Doctor (often a Rheumatologist or a Hematologist) who is specialized in these autoimmun illnesses like APS, SLE and Sjögrens. They are called "cousins" as they often go together.

    The Neurologists do not "get" what APS is about - too thick blood that has to be thinned at a steady level. To get a Specialist and to thin the blood to avoid TIAs, PEs, DVTs are the two most urgent matters for us.

    Read also "Sticky Blood Explained" by Kay Thackray. Shes has APS and writes about the different symptoms. Many members here have found it a very good book to read also for relatives to understand APS.

    The Admins have great knowledge! Good Luck!

    Kerstin

  • Just found the book at Barnes and noble

  • Hey, welcome to the group. How did your fingernails fall out? One of mines did the same thing and will not fully grow back. I think it was because of bad circulation. How did the Plaquenil help you? I still can't find a doctor who will give me Plaquenil. They keep on saying it is a nasty drug and that they only give it out to patients who have SLE Lupus. I hope you're feeling better. It's good to finally have a diagnosis and a treatment plan that seems to be working for you. Hang in there.

  • Sorry I replied but I think I didn't hit submit. The dr said it was from blood clots. My arms then hands would go numb. Then I could see black lines under my finger nail. They would turn brital and fail off then the nail bed would die. The warafin seems to be what help them start growing back but it takes a long time.

    I was sick running fever for six months and the plaqunil is what broke the fever and suppressed my immune system. My dr said it was one of safest drug you could take so I wonder if that true. I haven't had any side effects but it takes a long time to get the full benefit of immune suppressant.

  • You just need to check your eyes every year when you're on Plaquenil as it can cause vision problems. Hey, I didn't have long black lines in my nail beds, but I do get splinter hemorrhages. They appear on all of my nails from time to time. My nail came off and then it became warped and got some fungus in it now, so APS and some sort of fungus has messed up my fingernail. I might post a picture of it. I also get the numbness, swelling, and tingling in my arms when my INR is low. Thanks for the reply. I hope you're feeling better.

  • I had bad bad problems with Plaquenil please consider my post. I also had issues with Cymbalta-it gave me SERIOUS brain fog; I hate that drug worse than any drug on the market.

  • I'm glad u got all these responses! I know it's taken u a long time to get diagnosed, but I wasn't diagnosed till I lost my left leg and under a Hemotologist care for another rare blood disease for 13 yrs! So I asked him why didn't he know I had APS and why did I have to loose my leg to get dx 'd! The answer was insufficient to me! I did go gluten free for a while and it helps slot! I must go gf again after holidays! My first blood clot was in my lungs at age 24 and several afterwards! I was dxd at age 62 and told then I probably had APS my whole life! Mary is correct check b12 and thyroid and Sjogrens! I have Sjogrens and RA/Rheumatoid arthritis! My sister was tested after I was diagnosed and she too has APS! Her liver is inflamed too now and we r wondering why! I'm on placid an ant playlet drug and had to go on the shots of Lovenox/Enexoparin everyday as coomadin for almost a year was never stable enuf! Too many pills! I'm happy with the Low Molecular weight heparin! I still get bad memory problems! I come from Long Island, New York! I'm hoping there is a specialist for u in the Baton Rouge or New Orleans area for you! I've seriously thought of going to England because our docs here just don't get it!! I see a Hemotologist and Rheumatologist too! I'm also on cymbalta! For me it works! There are many sites that recommend specialty in APS ! My sis lived in Denham Springs, Louisiana for 7 years! Love it there! I will try to help u locate a specialist in Louisiana! GODSPEED

  • I am so sorry you had to go thru that long. You just think the dr should have fiquired it out. When I told my dr about hip bone dying that how he fiquired it out. He asked me if they tested when it died but they didn't and he said they should have caught it then because only a few things causes the hip bone to die. With the liver swelling I am going try the gf diet they told me on this site, it makes sense that could be causing my swelling, the dr don't know why it is swelling

  • I really want to thank everybody for responses and help. I keep going back and going over the responses. Still with some brain fog, I go keep going back and taking notes. I am trying the Guetin free, my stomach still swollen but seems a little better so hopefully it will keep getting better. I don't know how long it takes to get better. I ordered that book which supposed to come in tomorrow. I have learn so much from here and to say it best I didn't know how clueless I was until I got here. I still haven't found a specialist yet but excited about what I learned. Honestly I didn't think I would still be alive now six months ago but thank god for this site because I have a lot more hope that I can get better. Thanks again everybody and god bless you all.

  • Hi. Ask if you can be referred to Saint Thomas hospital hospital on Westminster Bridge London. This was the hospital where Professor Hughes discovered and named ANTIPHOSPOLIPID SYNDROME. It is sometimes called Hugh syndrome. I believe he still works privately there but there is also a brilliant team who were trained by him and who are now professors in their own right. I personally see Professor Beverley Hunt. She is a lovely lady and is always updating her research. Good luck and take care.

  • I didn't realise you didn't live in England. I am sorry. The hospital are I mentioned is in London, UK.

You may also like...