Hey

Hi I thought I'd just introduce myself as I'm new to this.

I'm Rosie (as you can probably see by my user name ๐Ÿ™‚)

I'm 27, symptoms started when I was 8. With arthritis. Then ITP symptoms started at 13. Correctly diagnosed with APS after a stroke at 19.

I have been struggling to medicate as my heamotologist discovered I am some what resistant to warfarin, so have been injecting myself daily for the last 7 years with heparin (clexane)

I have notice some new symptoms recently and as none of my family suffer and I don't know anybody who does, I thought it would be helpful and reassuring to meet people who do.

๐Ÿ™‚

46 Replies

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  • Hi and Welcome to our friendly site!

    I will start to ask you if you are diagnosed with all the three antibodies positive and also if you hava got a Doctor who i specialized in autoimmun illnesses? It is common that Rheumatologists or Hematologists (they are most likely to know our illness) not always know this illness. It is very important for us to get a Specialist!

    You say you were "resistant" to Warfarin. How was that for you?

    What are your main symptoms?

    Hope you will stay with us here as we have a lot of knowledagble and kind members here willing to help you.

    Best wishes from Kerstin in Stockholm

  • Thank you lure2.

    Yes I have all 3 antibodies- however my platelets have been gradually stabilising over the last 3 years ๐Ÿคž๐Ÿป

    My platelets went down as low as 1 which was tricky with having clots in such runny blood.

    It made treatment of both very risky.

    I also have sickle cell trait.

    I have a Haemotologist who was excellent and supported me through a successful pregnancy. And was always a phone call away with any queries. Sadly he retired earlier in the year, which I found terrifying.

    My new heamotologist is okay, he doesn't know my well enough yet so I have to talk him through a lot when I see him as he isn't familiar enough with my case to remember it.

    With regards to warfarin. I have attempted it 3 times now and my body just doesn't respond to it very well at all. I got up to 16 mg daily and my INR was getting lower.

    I was having to inject 80mg of heparin along side the 16 mg of warfarin and after 6 months of persistence. I decided it best to stop and have a break before attempting something else.

    My most recent additional symptoms are balance issues, dizziness, sight disturbance and my brain fog has increased!

    I've always had painful joins due to the RA.

    Brain fog

    Numbness

    Pins and needles

    Spacey-ness

    Memory issues ect

    How about you?

    What's your diagnosis?

    Regards

    Rosie

  • Hi and welcome, 19 was very young, I emphasise with what you have been through.

    I am intollerant to warfarin too, I was on a daily combination of clexane, aspirin, hydroxychloroquine and clopidogrel, I had the trust from my heamatologist to up my dose of clexane, depending on how I feel.

    You may need to talk to your specialist to tweek your medication.

    Again welcome xx

  • Hi Holly,

    Yeah It was young. Have you experienced the same?

    I am also on aspirin and hydroxychloroquine . How do you find them ?

    I have 80mg of clexane daily.

    Occupied with aspirin depending on overall feeling. What's your dosage?

    I take ferrous sulphate too due to anaemia. Do you suffer with this too?

    Can I ask your age?

    Regards,

    Rosie

  • Hi, most about me is on my profile - my 1st stroke was aged 35. 20 yrs ago, wasnt diagnosed until 12 years ago.

    Clexane dose was 60, with 75 aspirin and 75 clopi. I had 80 & 100 clexanes just in case, didnt use them very often, just when I had a virus or needed to tweek bloods a bit. Had no prob with combination at all.

  • Hi there and welcome, you will find lots of similar backgrounds to your own on here, solidarity and support. My children started early with symptoms, as did I, mine in teenage years, their's prior to that. Feel free to ask us questions, we all learn off each other by reading the various posts. MaryF

  • Hi Mary,

    Thank you for the reply.

    Did your children have the same symptoms as you?

    What were the first symptoms you noticed?

    It's a shame what we have in common is so troubling to us all but nice to talk to people who understand.

    It's been quite lonely the last 10 years.

    Rx

  • Welcome, don't be lonely! You have us. Where are you located? I have had strokes, heart surgery... it's all in my bio. To read my bio: click on my name, "profile" will pop up. I try to encourage everyone periodically to update their bios. I am due to update mine! I'm very glad you found us๐Ÿ‘

  • Hi and welcome to our friendly forum.

    Dave

  • Hi Dave ๐Ÿ™‚

  • Hello Rosie, Im so glad you have decided to join us - Welcome!

    You certainly had a young start to this condition but its good that you at least know whats causing your symptoms. As Kerstin has asked, do you know what antibody/s you were positive too? The reason we ask is that many who are positive to LA (lupus anticoagulant - nothing to do with lupus) find it difficult to keep their INR in range.

    Im slightly confused, are you injecting every day with clexane along with your warfarin or are you just injecting with LMWH? If you could let us know specifically what type of symptoms you are getting we can better understand and advise. Plaquenil is often prescribed along side any anticoagulants and many have to mix the anticoagulants to find the right balance for them.

    It sounds like your Hemo has knowledge of Hughes, but is he what we would call a specialist in this condition. By that I mean someone whose main practise is seeing patients with the condition or conditions that include Hughes so that he sees on a daily basis all the differences in presentation and has knowledge in treating them successfully.

    Just so you know, I inject with fragmin and my specialist has told my GP to add in clopidogrel if I continue to get migraines.

  • Oh I see, I'm not sure of all the antibodies but I do have the lupus antibody, yes.

    I was injecting 80mg of heparin daily alongside 16mg of warfarin- with the hope of stopping the injections when I became therapeutic.

    I have no stopped the warfarin completely.

    My heamotologist does specialise in APS. He has suggested trying apixaban, see if that has more of an impact. But I understand you cannot test it.

    Have you heard of that medication?

    I have never heard of plaquenil. What's that?

    How often do you have to inject?

    Rx

  • Im injecting Fragmin as a primary treatment, so no other anticoagulation besides that. It worries me that you say your specialist does specialise in APS and yet he is suggesting an DOAC not recommended for that disease. As I have said in my other response to you on the other post, please look at the Pinned posts section to the right of this page and download and print off the RAPS trial and give him a copy.

    Apixaban has not yet been trialled although I do know of a few people on here that are on it. As the Forum representing the GHIC Charity we cannot recommend that and would say to be cautious. Make sure that you do your home work and have discussed all the options with your Dr as he will be treating you with it off label. The gold standard treatment after an arterial clot, especially in the brain is warfarin. Some people may have to have an INR as high as 3 - 4.5 in order to get proper symptom relief. Many Doctors will run a mile and be resistant to pushing up INR that high. Use the analogy of not treating a diabetic with enough insulin!

    If you push the warfarin as high as you can and you still have symptoms then adding in an anti platelet like you are with the heparin is usually the next step, so clopidogrel is quite often used. If you are injecting with heparin anyway Im assuming its a supplementary dose, but have you tried using a full treatment dose an ditching warfarin altogether? Many including myself have had to do that. It seems unnecessary to me to put yourself through all the hardships of warfarin if you are injecting daily too. Id consider just injecting but you may get resistance on that due to cost but then again the DOAC's are also expensive, so horses for courses!!

    Plaquenil a quinine drug is normally given to people with this condition, it also has a weak anticoagulation affect. It helps with fatigue and any aches and pains you may be having.

    Id also suggest you getting your thyroid properly tested as many of us including myself have the trio of autoimmune diseases that run with Hughes, Thyroid and Sjogrens. Include in those tests Vit D, B12 and Ferritin as if any of those are low it can make you feel unwell with cross over symptoms.

    Finally, LA, one of the three antibodies that we tend to have has shown to be the most difficult one to control and has the tendency to upset control of warfarin INR. Like me, for that reason you may be one of those better suited to Heparin only.

  • Ive just caught up with your replies above and the extra information you have given. hydroxychloroquine is Plaquenil and we always suggest you ask for the specific generic now that Plaquenil the brand has been stopped. Again if you look at the Pinned Posts section you can get the info on that.

    I didn't realise you were also taking Aspirin, that perhaps another reason to suggest Clopidogrel as its a better anti platelet that aspirin to use.

    Also you mention you have anaemia. Another reason to get your B12 checked as many of us find that this can be in the low part of the "normal" range. You need to be around 500 at least or ask for injections or supplementation. Also your Ferritin. If thats low it stops things like your thyroid from working optimally.

    From your symptom list as I said in another reply, you need to get a proper thyroid panel done as its very possible that you also have autoimmune thyroid disease and Sjogrens which commonly run with Hughes. You need more than just a TSH which is unreliable. Many of us have to get this done privately as GPs won't do the tests we need. If you need further information on that please let us know.

    I feel like Ive bombarded you with lots of info so Ill give you time to digest it all!!

  • Thank you so much for the information.

    I have a lot I want to talk to my specialist about now. I will definitely be requesting these tests.

    I will digest and update you accordingly ๐Ÿ™‚

  • Hi APsnotFAB,

    I thought I'd let you know that I injected into the top of my glutes this morning and although it was sore and quite awkward. I will not rule it out as an option.. so thank you ๐Ÿ™‚

  • Hi Rosie,

    I had ITP at age 18 months old. ( I was born in 1969, now 48, so back then Hughes syndromes was not discovered. )

    My iit was very severe. I was not expected to live. My pedi heme told my parents I needed a splenectomy, but would not survive the surgery. I was on high dose steroids and critically ill.

    At 6 weeks I turned a corner...

    My heme here thinks I was in mild CAPS , and they just did not think to check for clots. He thinks the steroids kicked in and turned the CAPS around.

    At any rate, I live in Texas, but was sent to London to be seen at the London Lupus center. I, too, was struggling with a terrible memory. ( no stroke- thankfully. I do have seizures from micro clots and a probable TIA before diagnosis. ) I got lost driving also!

    Professor Hughes told me the trouble was my INR was not set high enough. Texas had set it at 2.5-3.0

    It needed to be " at least 3.5

    I was not on enough warfarin.

    I would always need more, and INR would fall.

    I was on 12.5 mg at that time. I would fall to 1.9 INR on that mg dose.

    Now I'm on about 17mg daily ( some nights 16, some 18, but most often 17 to maintain an INR of about 3.7- 4.0. That seems to keep me feeling well. Even 4..2 is fine.

    Professor Hughes was absolutely correct.

    Under 3.0 and balance problems, poor memory, migraines, and DVTS return.

    As APSnotFab wisely suspects, and I agree from personal consultation, you very well may be under coagulated.

    I haven't heard you say, or perhaps I've missed it, at what number is your current INR set?

  • Hi Kelly, sorry to hear you have had such a tough time.

    I was also on 16 mg of warfarin and as they were increasingly my dose, my INR was getting lower. When it dropped back to 1.6 on 16mg (after 6 months of persistence- and injecting 80mg of clexane with the warfarin dosage.)

    I decided to stop warfarin again.

    I am now anti coagulating with 80mg daily heparin and aspirin.

    It's interesting you mentioned the splenectomy as my paediatric heamotologist also wanted to remove my spleen and this is why he has misdiagnosed me with just ITP and LUPUS . My mother refused.

    ITP also almost killed me too. I had a 14 hour nose bleed when my platelets dropped to 1.

    Having seizures must be scary. So you feel then coming?

    I was very interested in what @APsnotFAB mentioned about the different texts I need to request.

    Do you know all the positive antibodies you suffer with?

    Rx

  • Yes, I think we must be similar but I believe you are more severe, with a full stroke at 19. Very scary.

    My platelet count was at 3.

    My seizures are not grand mal- the are partial complex/ temporal lobe. They stay confined to the same 1/2 of the brain they begin in- don't jump the mid line into the other 1/2 of brain- that's what causes a grand mal. I can just feel dreamy and "spaced out", detached from reality.

    Since being diagnosed with these seizures in a few years ago and commencing anti epileptic medication, I've had no trouble. Me EEG's look great, and we run them for 72 hours. ( before Meds I would have over 1000 a day, even if they would start, then " abort."

    I'm positive for aCL and B2GP1 antibodies. They are relatively low positive; not in eyebrow raising range by any means to account for the rather aggressive case I have. I do go in and out of sero negative and sero positive status, ( well, I'm fairly newly diagnosed- 9 months only) so I've cycled once pos/ negative/ now positive again/ but I'm wondering if now also LA but can't be checked because of the warfarin.

    I also Bridge with enixaparin. In the USA doctors tend to use it more readily than the dalteparin, but it really is an equivocal LMWH.

  • How did you cope with your diagnosis?

    That's interesting. I regularly get spacey , kind of outer body experiences. That feel like I'm not in reality. I wonder...

    I don't know all the names of my antibodies but so many people on here do so feel like I should. All I know is the conditions I have and I know I am positive for the lupus antibody.

    Did I ask how old you are?

    Do would you say the DOAC group of anticoags are good?

    I'm tempted to try.

    After injecting for over 7 years, it actually starts to become impossible with the level of scar tissue. It's not a small dose either so it stretches the skin too also causing bruising

    Rx

  • I'm 48 .5 now.

    Listen very carefully to SPsnotFab. I feel she really will guide you wisely and she is is your home country and knows your health care system well. She also knows the dangers of stroke.

    She is ( only in my limited knowledge) slightly unusual in that warfarin didn't suit her either. My understanding is that it usually does but with the Luous anticoag the instability is a dangerous thing with the INR.

    Did you not post earlier that when you cut yourself you Clot instantly? Your children think you have super hero powers? Maybe that was someone else? If that was indeed you- then you are NOT properly anticoagulated.

    That's you first and scariest clue. I suspect you must have migraines and balance problems. Miscarriages? Livedo? Vision problems?

    I have not coped well through the yesrs. I'm pleased to have finally a diagnosis, but it's criminal really that so much damage had to happen in the mean time when every clue was there- and ," the dots were not joined" as you say in England.

    ( we say, "no one connected the dots.")

  • Hi Kelly,

    I agree! She definitely knows her stuff. It's refreshing to have so many suggestions.

    That is scary if someone has mentioned that.

    That is not me. I do not have super power. I actually bruise like a peach and when I bleed. I really bleed.

    However, I suffer with clots even when my platelets count was super low that's why my treatments were so tricky with two condition that contradict each other.

    Sorry to hear you've had such a hard time!

    Rx

  • Hi Rosie - Have you mentioned where you live - I didn't see it if you have --But welcome to our very knowledgeable group and we are somewhat friendly {{{ just joking } but WELCOME .. Jim and Casey here in N.H. USA :-)

  • Hi Jim and Casey,

    Thank you very much ๐Ÿ™‚

    I live in Hampshire UK

    Rx

  • SEE I am in the NEW Hampshire LOL :-)

    Just across the puddle

  • Hi Rosie,

    I'm glad that you have found this forum and will hopefully get some good advice and support. I'm seeing a haemotologist for the first time as they've found clots in my liver- I was told that I'd probably be put on anticoagulants. I've got a CT scan today to see if any other organs have clots and then an ultrasound at the end of the month. All the best everyone xx

  • Hi groovy,

    Sorry to hear they have discovered a clot.

    Good luck and let me know now you get on.

    Rx

  • Hi there Rosiek90 and welcome. See you are on hydroxychlorine chlorine same as me for APS and RA.is it helping you with the pain.It has me since my consultant put me on it this year.He had thought he'd first put me on it. Thought my memory was bad.his seems worse ...lol.

  • Hi Fra22-57,

    Haha well I'm glad you're on it now.

    I would say it seems okay but when I have a flare up, nothing really seems to help.

    I have now started have pelvic done pain the last year with is a new area affected by my RA.

    Where do you suffer most?

    Rx

  • I'd say my hands.my wrists swell and anything try and do my hands so painful,sometimes can't use one hand

  • The rain is ridiculous during flare ups!

  • Are you in the UK? I'm in Leicestershire

  • Hi Jane,

    I am indeed in the UK ๐Ÿ™‚

    I'm in Portsmouth, Hampshire.

    Rx

  • Hi Rosie - where do you see your consultant as there is a good one in Southampton?

  • I'm in Portsmouth. I did have an excellent consultant but he unfortunately retired earlier in the year.

  • It's so hard when we find a Dr. that is good and then they leave or retire and we start the search again.The problem is if we go thru to many useless Dr's on the road to try to find a good one then you can be labeled as {hard to get along with - or hard to deal with } and this can and has happened to me over here anyways. So it can be a HUGE PAIN when this happens

  • I totally agree! My first heamotologist was useless.

    He had no emotions or care to everything I was dealing with and being diagnosed with.

    He told me I'd never have children and it would always end in miscarriage.

    So you can see he had no interest in seeing a light at the end of the tunnel so to speak.

    I have a 6 year old daughter by the way.

    Rx

  • Nice my friend -- i deal with a total of 25 Dr's- most specials and some are these that run certain tests, i always am sent back to them some i see as needed - some yearly - six months - and so on down to twice a week and 4 different hospitals. I have been told i am extremely rare patient . on my list of 26 dia. problems ends with " Extremely Complex Medical Patient Please see attached " That always gets new Dr's attention fast - then the explaining begins HA

  • I totally relate! If I had a pound for every time I heard "oh you're interesting aren't you" - I would be rolling on it!

    Rx

  • Rosie,

    Welcome! I read through your threads and saw in your initial post that no one in your family has APS. Do any of your family members have other autoimmune diseases? After I was diagnosed and speaking with my docs, pieces of the puzzle came together. My paternal grandmother's family was riddled with them. Her sister had Lupus, my father & first cousin have Multiple Sclerosis, my sister has Crohn's Disease, my other cousin and my aunt have something too but I can't remember what their autoimmune diseases are called. I believe if APS had been a diagnosis back in the day, my grandmother would have been diagnosed. She miscarried in between each of her 4 pregnancies, had a stroke, etc. Just food for thought.

    Lisa

  • I can honestly say the other issue family members have had is too much fluid around the brand.

    Come to think of it recently I have felt curious about my nan because she has blood pressure problems and has arthritis. She also suffered with "episodes " the last several years and then a stroke in Jan this year.

    I asked her to have a blood test done just to check.

    Rx

  • Hi Rosie welcome, ๐Ÿ˜€Diagnosed at 33 (I'm now 42 sent home with no treatment or follow up.....GP had to print off info from google, concerned the more I learn about APS and how I can manage my symptoms alonexx

  • It's scary missmolly and I feel can be quite lonely.

    How are you coping now?

    Rx

  • Getting on with it but older I get the symptoms get worse, self medicate with 75mg aspirin how's life for you xx

  • That's lucky that you only take aspirin. They have prescribed you omeprozole to take before the aspirin haven't they?

    I have ups and downs. Struggling with injecting again as I am so scared and bruised.

    I am doing research on apixaban to potentially start taking that. Though it isn't licensed for APS..

    I'm starting hydrotherapy soon too for arthritis.

    When we're you diagnosed?

    Rx

  • Hi R x

    I only take aspirin on the advice of a helpful nurse on the phone a few years ago. Really been left in the dark since 2008 when I tested positive. My GP had to print out condition from google so keep my ever increasing symptoms to myself xx

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