Hiya all, was diagnosed with APS and placed on lifelong warfarin 6 year ago - I had to go into hospital for a lumbar puncture as my epilepsy was being investigated, while in there I had to have heparin injections and a vitamin K injection to reverse the warfarin so I could have the procedure carried out - after a 4 day stay in hospital I was released home and the nurses visited to continue with the heparin injections, due to the vitamin k injection the heparin had to be given for over 2 weeks after that - my stomach was that bruised they had to start injecting my arms - anyway this was January and I still have 3 bruises (no pain) and they're rather large - I've been to see my gp and she said it's simply discoloration of the skin there's nothing she can do about it and it'll fade in time (although it hasn't yet) I'm rather unhappy with the gp as I feel like I've been fobbed off - I also went with a "freckle" and was told by the gp she could get a doctor to look at it but might refuse to remove it as I'm on warfarin - to say I'm slightly concerned is an understatement and just wondering if anyone has any words of advice for me - I'm going to move gp surgery but don't know whether to file a formal complaint or how to approach my concerns with a new gp so I don't sound like a handful of trouble
Thank you all in advance
Much love
Bev x
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bevjane74
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Hi Bev, I have been injecting clexane for nearly 12 years now and my abdomen is permeantly blue, almost black around injection site. I had a 2 year break while I tried another anricoagation, it took almost 18 mths to have a normal pink tummy!
I can also say if I injected in my leg, the bruise was huge and lasted twice as long, months, as I do a lot of swimming I tried not to inject here. Never managed to self inject in my arm.
So I think your GP is correct and it will fade in time. Maybe worth taking a picture and measurements for your records if needed later though?
Regarding the 'feckle' if you think its nasty or needs further investigation then write to your GP requesting this be referred to a skin specialist?
I have just had a non maligment tumour taken off my face (Side of my nose) without the skin specialist worrying about my bloods.
If needed you can always bridge again.
I also 2 years ago changed my GP, requesting another GP in the same surgery, I just stated that the GP and I had differences in my future health plan. I worried that I would be treated as a problematic patient but my new GP is absolutely wonderful and works with me. I needn't of worried.
As an aside, just wondered if it was a basal cell carcinoma? Have a family history of them and recently read that they have a link to autoimmune conditions. Best wishes
Thanks for your response- the gp surgery has been awkward for a long time giving me the wrong diagnosis for 2 years and the warfarin escapade and bruises could have all been avoided if I had of had the injections before I went in to hospital as I was assured I'd be in and out the same day - while in hospital the ward made a mistake and doubled my meds so I was at a risk that could have been avoided if the gp had done things appropriately at the start - it just feels like I'm being brushed aside every time i go there cos I have complex illnesses and its worrying me slightly
Hiya bevJane, just to say the injections always leave a bruise. Sometimes you can be lucky and just have a prick size bruise and other times wow, the bruise can be huge. They last for an age. Weeks or months. I had internal bleeding a couple of years ago and still to this day my tummy has a lovely purple hue to it. So don’t worry about the bruising. Take care and sort out your gp. x
Thank you so much - I just wish I had a gp with a little understanding hopefully my new gp is that I know it's normal for us to know more about our illnesses than they do but it's just getting to point of ridiculous now 🤣
My gp is pretty honest with me and says I know more than he does! He is great in that he refers me to any consultant that I mention and consequently I travel to London for haematologist, rheumatologist and neurologist.
With my gp (the one I'm leaving) if a consultant has said we think you need to see a specialist the gp totally ignores them - I have fibro too and I was told by a pain specialist to start on amitriptyline- due to me having epilepsy that would be the best to try- my gp has refused to give me them saying they would effect my seizures - I had a tooth extraction caught an infection rang the dental hospital they told the gp to give me anti biotics and which ones they even refused that too I just think what's the point in seeing them I'm wasting my own time constantly x
OMG! That’s disgusting behaviour from the gp. Obviously thinking budget rather than patient. Can you move surgery completely? It’s brilliant having this forum to vent frustrations and ask questions. You know you are not alone.
That's why I landed here but yeah I'm moving surgeries and really thinking of filing a formal complaint - told me I had one illness turns out to be something completely different and the gp is trying to say it's the same thing just a different name - the difference being if it's not the same thing and I'm not treated properly I can end up in a coma - I'm so glad I've found somewhere to vent cos this has got my head in a bit of scramble
Lol you are certainly not alone with the scrambled head!! It’s the world of APS. Before I was diagnosed I had open heart surgery, a replacement valve which they said was damaged through having rheumatic fever. Err I never had rheumatic fever!!!! Probably caused by APS. After the operation they couldn’t wake me up and I was in a coma for over 4 weeks. The consultants, Anaesthesist, etc had a big meeting with one of my brothers and told him they had no idea what was wrong but to prepare the family that I was brain dead and would never wake up!! My husband has ms and is more or less bed bound (up for only 2 hours a day) and they were shielding a lot from him. It was only after I started having Tia’s that APS was investigated and when I told haematologist in London about the coma she said ‘another piece of the jigsaw fits’ so it was probably catastrophic APS. Hey ho, 🥴
We all seem to go through so much I feel as if I'm just collecting illnesses right now and I don't want to Haha- just wish the list would stop growing x
You may have a long wait 😱. I had gone 2and a half years with no tia only to start having them again 6 in the last few months, leaving my balance shot. Luckily I haven’t fallen, I’m like a weeble, I wobble but don’t fall down.!! They are now investigating to see if it could be epilepsy!! Groan!!
I wonder if you today have a Specialist of autoimmun illnesses?
When you had the serious CAP-issue and were in hospital such a long time and so very bad and finally got a diagnose of APS did they give you any anticoagulation-drug?
You talk of TIAs (6 in the last few months).
Are you on bloodthinner today as you should not have those TIAs if you are properly and stable anticoagulated?
Hiya. I was on warfarin before heart op at 2.5. After op I was increased to 3-3.5. Once I had first tia aspirin was included. After the first few, gp started me on clopidogrel instead of aspirin and that’s when I went over 2 years without a tia. Inr now 3.5-4.5. I have been very stressed since the beginning of the year, and wasn’t too surprised when I had a tia. So to answer your queries, I am fully on warfarin and clopidogrel. If inr now drops to 3.5 I inject tinziparin too. I go to Guys haematologist 3 monthly and rheumatologist at St George’s London , APS specialist. I have just had brain scan (waiting for results) and then to see neurologist to see if anything else is going on. Gp Wanders if it could be epilepsy related or some type of migraine without the pain?? Although gp admits he doesn’t know much about APS, he is more than happy to send me to London to the people who do know. (I live in Warwickshire in the midlands). I also care for my husband who is bed bound with MS. Hope you are keeping well.
It sounds like you have got APS-Specialists around you.
INR 3.5 - 4.5 is a rather high INR (over 4.0) and to keep that stable I wonder if you selftest often or cheque your INR as you are able to take Tinzaparin if you drops under an INR of 3.5? That shows that the Dr in charge of your anticoagulation thinks it is important to keep a steady INR. If I am too low in INR (under an INR of 3.5) I inject with Fragmin.
I do not remember if you are Lupus Anticoagulant positive as in those cases it can be difficult to keep the INR steady.
You talk of TIAs. What neurological symptoms do you have? When I had TIAs or microemboli, I had AURAs, migraine, dizziness, doublevison, lost my vision on one eye, had sudden ballanceproblems for some minutes and had to hold on to a tree not to fall to the left (always rotation to the left), sudden falls and not able to protect my face as the arms did not function etc, as to the neurological symptoms.
When I keep my INR in place I do not have that anymore. I live in Sweden and selftest every second day and do parallelltesting when I need, as the vein-tests and fingerprick-tests can differ a lot in INR as to the Lupus Anticoagulant positivity.
As I also have pulmonell hypertension and leaking heartvalves it is important to keep the INR around 4.0 I have been told by my Cardiologist. We have too thick and sticky blood and that must be thinned stable and properly. There are several methods to get the blood thinned but for that we need a Specialist who is willing to keep you as his patient as he works with people like you at a daily basis and knows APS well.
I do have a coaguchek at home and test every couple of days but because of difference in readings I go to surgery twice a week for venous test. I am lupus anticoagulant positive and it’s a right pain trying to keep inr stable. It drops/raises so quickly. When I have a tia, it starts in my face. I feel as if I’ve been to the dentist and had a load of injections. I go numb and my eye and mouth both droop, afterwards I am so exhausted and after each one now I seem to be slightly worse and don’t recover as well. When I saw the rheumatologist (dr Kaul from the list) he said I am significantly weaker on my left side. But the gp now says he’s bothered that I’m having tia’s and yet I haven’t had a full stroke. Although the previous brain scan does show that I have had a stroke! After the last tia my balance has completely gone and I now have to walk with a walker. Like you said often I have to grab something or get to a wall or hold onto a piece of furniture to stop me falling completely. I’m sure people are looking at me as if I’m so drunk! I’m waiting for results of mri scan to see if anything shows up, but I bet nothing does which seems to be the way with APS.
I am so sorry that you have such big difficulties with your INR! I am rather sure that the problems are linked with your anticoagulation.
It must be some way to make it easier for you as you are able to test at home also with a CoaguChekmachine rather often.
I wish I could help you as you also have a lot of work with your husband having difficult MS. If you had another situation with no TIAs or microemboli, as you obviously have, your life would be much easier.
We are, as to the INR and same symptoms at least, almost in the same situation; triplepositive and being able to test at home several times a week and also go to lab for veindraws. Not everyone has that possibility I know.
I do like this; test at home in the morning and if I want to parallelltest that day I have to go to the hospital lab within around 3 hours after i took the fingerprick-test in the morning. My INR is always higher in the vein than in the finger.
As i have been doing parallelltesting in the lab I know how big difference it should be between the two bloodtests that day. Then we can be lucky if we always have almost the same difference between the two bloodtests. It can never be exactly the same but it may be ok if it differs a bit. If we then compare the two we can know what INR that should be. It is always the vein-value that counts!!
Important to write everything down every day!! I write down my Warfarin-dose. I dose myself which is very good as most nurses in a anticoagulationclinic do not understand how we with Lupus Anticoagulant function. I take 2 tablets (à 2,5 mg) every day and if I change my dose I do it with 1/4 of a tablet or not more than 1/2 of a tablet. We are different persons with different dose of Warfarin as to a lot of things incl our weight. So how much Warfarin we take is very individual and only the INR is important.
Anyway the most important thing is that we do not change too big dose as then you you are too low in INR and must try to get it up.
I do not know if you eat vegetables as they are full of vit K that will lower our INR.
The most important thing with Warfarin when having APS is CONSTANTY in what you eat and drink and what drugs you take etc. The greens are important that if you take those (which we need and feel good of) you must try to eat the SAME AMOUNT every day. If I eat a little less of the greens my INR will drop rather fast (in about 15 hours) . For me it is more difficult to get the INR up with Warfarin as it takes about 2-3 days to change the INR with Warfarin.
Please try to write everything down, like a journal of every week, as our memory is so bad . I do hope you could have the possibility to dose yourself when you learn how to live your life with Lupus Anticoagulant. I should say that with the help of a Hematologist, who completely understands your situation, you could be able to dose yourself and folloow your INR yourself to keep it in place.
I do not parallelltest very often as I know the difference between the two bloodtests (vein, finger) as I also are able to selftest very often at home to follow my INR. It takes some time to learn this but most important is to write it down and look back on it afterwards to see what you did and how you reacted.
I wish you well and I understand completely your difficult situation (not complete as that is impossible of course).
😅 I’m glad you changed that as my finger is nearly always higher than vein. I keep a record of my inr in a book. I do prick in black pen and venous in red pen. I go for a while being able to predict what the vein sample will be and get quite confident in predicting, so then all of a sudden it will be completely a different result! Sometimes the same as prick or higher or lower and I’m back to confusion. We eat much the same each week. I don’t overdo the vegetables and not the greens. I have the same fruits of a morning etc. Most of the time I ignore my symptoms and just carry on regardless. I have written before how I get the tia symptoms and so just go to bed. It’s because of the hassle of organising care for hubby if I’m in hospital as he can’t be left alone. It’s just easier. But I am realising how much I seem to be deteriorating the past 6 months. Last year (or was it the year before last) I had horrible pains in both my sides and after 6 days I succumbed to hospital only to find I’d been bleeding out internally and on the 6th night I went black from under my chest to the middle of my thighs!! 7 hours of blood transfusions later, and I still have to be careful and the bruising is still faintly visible on my stomach. It’s all good fun eh. Oh but it is so good to be able to speak to people who know what we are going through.
You are doing a great job with yourself and your husband. I wonder if the Rheumatologist at St Georg´s in London is a Specialist who you can call when you need help and advice and if he understands your difficult situation also, or is it the Hematologist who you see 4 times a year that is the Doctor in charge of your anticoagulation that is most knowledable of your symtoms and anticoagulation-drugs.
You said your GP was very helpful and that is very good, but he must not take the responsibility to send you to Doctors if they are not up-to-date with research and do not work with patients like you daily.
I hope you have got one good APS-Specialist who understands your difficult situation, otherwise you should put up your own new question here on our site and I am sure others who live in Enland (I live in Sweden) will help you and give you a good name in England who you know you can trust and who is up-to-date with autoimmun illnesses and willing to take you as a patient.
Also I am sure you know that the greens contain different amounts of K-vitamin.
How far is it between the vein and the fingerprick-value mostly?
The other day my INR had went up with 1.4 in two days so I took 8 big brusselsprouts and the next day my INR was in range again. Could not understand why it was suddenly that high....!
It should be (as I already said above) that the fingerprick test is always higher than the vein-test!
It should also be if i eat a little MORE of greens the INR will drop faster than to lower the Warfarin dose. It takes 2-3 days to change the Warfarin-dose.
I feel ashamed, but it is very hot in Stockholm today. Is that en excuse?
Hi, have you tried having a meeting with the practice manager, taking a reliable friend, neighbour, colleague or work mate with you. It may well take time to all fade back, I know after each pregnancy it took ages for large areas of bruising due to Fragmin, to calm down, it did in the end, but it took it's time. Regarding freckle/mole or whatever, I know when I needed something checked out, I was sent to an NHS photographer, who then emailed the dermatologist, who then asked me to come in for an appointment, I should politely push on that one. MaryF
I done that a while ago and felt again like I was fobbed off but I might request a meeting and still change my gp surgery because I don't feel as though I'm being listened to or being given the right care or information but that's a good idea about the mole so may suggest that to the new gp 😊
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