I've just been diagnosed with Hughes (have had Sjogrens & hypothyroidism for years) after suddenly & with no warning developing blood clots in my left arm which blocked the artery and left my hand, cold, white, paralysed & in agony.
I was operated on 3 times in 24hrs - the first operation lasting
2 & 1/2hrs under local anaesthetic only, was very traumatic, the next two were under generals.
I have a 6 inch wound in the crook of my elbow which seems to be healing o.k but still painful and I'm now on Warfarin for life.
This was done almost 3 weeks ago and I was in hospital for 10 days.
I have no pulse in my left arm and have to wear a glove 24hrs a day or my hand gets cold, white & numb/painful.
This has knocked me for six, physically & emotionally.
I feel very unwell and weak, still need lots of 'looking after'. Just having a shower exhausts me and I'm very anxious and very tearful.
My GP has never come across this before, was amazed that I had no pulse, but just says to keep resting & suggested anti depressants.
Has anyone else experienced anything like this?
I feel like I should be recovering quicker and don't know why I still feel so ill & I'm frightened that there's something 'wrong' and my arm/hand will never recover.
I've never been through such a terrifying ordeal, nor had I heard of Hughes until now. Feel very lost & frightened.
Any advice would be very gratefully received.
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Janeh1960
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I don't know if this helps or not, but while in the hospital for acute pancreatitis all the IV sites kept blowing. The DR decided to place a pic line in my left arm. I went to their OR looking room for this and the guide wire is seen on a cat scan imageing thing while they are placing it in the artery. Approximately near my muscle area just above the crook of my elbow he couldn't put it any further up as he met with great resistance. He stopped at that point and decided to use it in that position. A few hours later, as I was heavily medicated for the pain, I woke up to feel excruciating pain in my arm and the area was wet. The lights were out so I couldn't see what was wet and from what. I rang the nurses and she came in, turned the bed light on and said, don't move, i'll be right back. She came back wih the charge nurse and disconnected me from the meds that were going in. I complained the pain was excruciating and she said she called the DR. and as soon as I was cleaned up I was going for an ultrasound on the arm. The ultrasound showed 2 clots, 1 they said was coming and the other was going, one was where he had placed the pic line and the other was on a different side and above. When he met with that resistance when placing the pic line, he should have realised something was blocking it, but he didn't and proceeded to use that site. By it being a blood clot the meds they wwre infusing couldn't go in so only filled the arm just under the skin which is why it was so swollen and painful. The way I look at it, is the pic line blunder probably saved my life, it stopped the clot from moving further, although at the sam time it could have pushed it elsewhere. My blood pressure and pulse are very weak in that arm after some 8-9 years, when it happened. And I have numbness in some fingers and side of the arm to the elbow. I cannot tolerate either cold or hot items. But that excruciating pain is gone, but I remember it well, and remember it took a long time to go away. I did not have surgery they used some kind of clot buster medication on me which I remember was an IV bag covered in black plastic. I wish you well, just know we are all here for you
I had a subclavian artery stenosis and ended up with a Dx of Raynauds in my right hand. (still have it-no one seems to know why) If the temp drops below 20deg C my hand aches. As a result of this I had a finger amputated (no blood flow) due to gangrene (hideously painful!) despite infusions and drugs to try to restore blood flow. Pulse was often absent but intermittent. Rheumy sent me to a vascular surgeon (got in a few days later) who found a pulse that day and he rang the rheumy and told him he probably didn't know how to take a pulse!! Rheumy was a bit offended at that! I had a balloon angioplasty and there were thoughts to bypass artery with a graft as my artery for some reason went behind my oesophagus and a stent would have abraded through and give me all sorts of other problems. Was told that veins would grow and bypass and it would get better which it eventually has to the point where I can live with it but it's taken nearly 2 years. I found (on the net-of course!) a little heated pad powered by a phone power bank, which keeps warm for around 2 hours. There were gloves that came with it but as I only needed one hand I stitched the the pads together to slip over the hand and cover it with a mitten. I have tried various bits and pieces but this works best for me.
Unfortunately, if you have Hughes you can get clots anywhere not just extremities. I've had one in my spleen and one in bowel as well as the standard PE's and DVT's.
It's not great news but the proper anti coagulation helps enormously and mostly you learn to live with it.
Not sure where you live in the UK but the Admin on here can point you to a
doctor that understands this condition.
Are both pulses absent-ie the radial and ulnar pulse? I also now have differing BP readings on arms and try to avoid having it taken on my right side as it's sure to make my hand feel as though a it was whacked with a sledge hammer!
Most obvious is pain in the area. For spleen -it felt like someone had run a poker through me from front to back, hurt to breathe-I thought I had another PE perhaps low in lung but CT confirmed spleen and same with bowel. I have had bowel obstructions in the past and some times I get crampy pains that will go away after and hour but this one defeated all my pain meds and went to ED to have confirmed. Big worry was that the clot would rupture and cause lots of problems with contents spilling into abdo.
I have to say that much of the time I feel pretty good and have learned to cope with all this-going for a walk or out to shops when I'm well but take it easy and lie down when I'm not.
It's good to go back and read through some of the other posts on here and find you aren't crazy, got dementia or having a heart attack!
Hi there, please use this forum for lots of support, are you also a member of Thyroid UK? They are also on this platform and terribly helpful for Thyroid issues. Your GP will probably wish to know about this list of recommended specialists: hughes-syndrome.org/self-he...
I always say to people as well as making sure your Thyroid levels are ok, get your doctor also to test your B12 D and iron as it is important to keep an eye on those also. Wishing you a speedy recovery, it is better to be diagnosed than not to be. The trio of disease often mentioned by Professor Hughes himself is, Hughes Syndrome, Sjogrens Disease and a Thyroid problem! MaryF
Thank you, I am a member of Thyroiduk, it's been invaluable. I take T4 & T3 which has been a life changer and was doing fairly well with that & the Sjogrens till this happened.
I'm trying to educate myself about Hughes fast, I need to get some kind of control of my life back through knowledge, I've learned over the years not to trust every medical professional I come across!
I just want to send you hugs and to say what a terrible ordeal this must have been for you. Sending you my sympathy and hope that you have lots of support from your family and friends.
Thank you Sue, I am finding this very difficult to deal with, both physically & emotionally - I'm not very good at being incapacitated, I'm a teacher & a self confessed control freak 😊
I am blessed with a wonderful family who are taking brilliant care of me.
I am also sending you my sympathy and I also hope you have an APS-Specialist which is very important and that you keep your warfarin in the right level and also steday. I have an INR of 3.2 - 3.8 and selftest every second day. If the INR goes under 3.0 I take a Fragminshot.
Please stay with us as knowledge is power with this illness.
What is a fragminshot ? My specialist has been trying for 12 days to raise my INR from 1.25 w lovenox injections and coumadin he now has at 7 mg. Bloodwork again tomorrow
Hi, I live in Sweden and take Warfarin (about the same as Coumadin in your country I think). This question was written 5 years ago and then I had a lower therapeutic level for my Warfarin.
Today I have an INR of 3.5 - 4.0.
My Hematologist has given me a Fragminshot to take when my INR is under an INR of 3.5. Important for us with sticky blood to keep the blood at a steady level all the time.
I also selftest at home. Very good in these Corona-times.
Wow! You live in Sweden!! How cool! That's on my list of places to visit as is England and many more!! I hope I can get my INR up from 1.25 then doc will stop horrid injections. My body resists certain meds sometimes. Ugh!! I just took early retirement at age 55...was hoping to start traveling in 2022 after covid but if I cant get healthy ...maybe not.
Do not say that. You have to learn about this illness and get a Specialist who works with people like us every day. Usually a Rheumatolgist or a Hematologist.
You have answered a very old question and if I were you I would put a new fresh question and then you would get many answers.
Tell us your symptoms also and if your had all three APS-antibodies positive when diagnosed. This is a good place to know APS better indeed.
I have a specialist hematologist. He did two blood tests 3 months apart to determine APS. My only symptom is I developed blood clots in my right arm a year ago. Using Eliquis and xaralto my NP tried for a year to get rid of the blood clots. They got better but didn't go away.
Thank you, I'm in the UK, Norfolk I'm under the Vascular team mainly at the moment (although Haematologists & Rheumatologists were involved while I was in hospital) as they dealt with the emergency of dealing with my 'blocked' arm.
I see a Rheumatologist re Sjogrens but I need to find a good Hughes specialist.
I'm waiting to be sent a follow up appointment, not sure who that will be with.
I'll be asking my GP to arrange for me to see one of the Hughes specialists on the list on here as well as the Vascular surgeon.
There were some blood tests still outstanding, but I was told that due to the nature of the spontaneously forming clots in my arm, they reappeared as soon as they removed them, no previous or obvious problems with my heart, blood pressure etc and me being strongly autoimmune, as are most of my family, it was 99.99% Hughes and they were treating it as such.
It came from nowhere but with hindsight I had had a few odd symptoms, particularly more & more frequent visual disturbances, 'metallic zigzags' (I thought they were 'migraine auras, though I didn't get any headaches & don't suffer from migraines) had just had a nasty chest infection, working far too hard & lots of stress.
I take Plaquenil for Sjogrens.
They set my INR at 2.5, I will
be asking that it's increased to 3.
Do most APS specialists usually agree with this and also self testing or am I likely to have a fight on my hands?
I've often had to fight to get the treatment I need for my thyroid so I'm used to being assertive with Drs 😄
My GP is very supportive but admits she knows nothing about
APS, she's busy reading up on it.
Very reassuring to have all you knowledgable people here for advice & support.
Been such a scary sad time for me & my family, was such a shock.
I would say that an INR of 3 is too low. People with APS and neurological issues sometimes need a little higher INR than those with miscarriages only. I had to fight with my Hematologist to get 3.2 - 3.8. Feel best on an INR of 3.8. We do not bleed from APS but clot.
Hi, hope things start to get better but I think with this illness we all experience similar and some times experience different things. I replied as I had a clot in my left arm my clot damaged some of of the vessels to my Palmer arch and thumb and finger . My thumb and finger went blue and they could feel a week pulse in my wrist with the Doppler scan. Fortunately my body dispersed the clot quickly with the assistance of warfarin but it left some damage similar to yours. I have to keep my hands warm because of raynands. I have arthritis in my hands and my fingers and thumb hurt on both hands but especially in my left hand. I get numbness in my hands. I suffer with many other issues but very similar to you. I take a lot of medication for the prevention of more blood clots. I take warfarin and I have to stay within a 3-4 range. I also need to take nifedipine to keep the blood flowing. I'm on other medication for the neuro sides of things a lot of pain medication to. I wonder if you are on similar meds?
Hope you feel a bit more settled that you can talk to people who understand.
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