Really Worried !

After seeing professor D'Cruz yesterday I am left feeling really scared. He said my APS levels are low and thinks long term fragmin use could result in a brain bleed ! He wants me to see Beverly Hunt at St Thomas to review and change my treatment but im not sure how long I will have to wait. He has given me another two months supply of Fragmin but I am now totally paranoid about taking it after he said about the risks. In a way I would rather suffer the horrible MS type symptoms and risk of a TIA than worry about the danger of having a brain bleed. I have been taking it now for nearly three yrs without problems but he told me a story about one of his patients who had a brain bleed after four yrs after previously doing fine on Fragmin. He carried on to say she had to have major brain surgery and nearly died ! I haven't taking my Fragmin now for two days now because im left feeling so scared.

22 Replies

  • Hi, carry on with your medication from where your consultant left you, but he and Professor Hunt will put their heads together regarding your care, and just because something is changed does not mean it is set in stone. Please make sure you have somebody you trust to be your advocate and support you through anything that is stressful and upsetting like this. If he has left you on this until this review, then follow his instructions... MaryF

  • Thank you Mary I know your right im just very nervous after the Fragmin scare. He has left me feeling that im holding a loaded gun to myself everyday ! He is a lovely man and an amazing Dr but I could of done without the brutal scary stories ! I know he is just making sure I know the potential risks but im a bit of a worrier and have very few family and friends for support.

  • I think the medical profession are in a very difficult position with anticoagulants at times, which is why there is such a dilemma with sero negativity, at least common sense prevailed each time I was pregnant! Try to relax as much as possible, and test results come and go anyway. If you are changed off medication, for peace of mind plus useful information, keep a daily diary of your symptoms, start now.... MaryF

  • Hi there.

    I have been on Fragmin for over four years and never had any problems. On Warfarin I had TIAs and clotting, return of migraines and MS type symptoms. I had a review, this week, at the RNHRD in Bath and they are happy for me to be on Frgamin for life.

    I agree with Mary about you carrying on with your Fragmin.


  • Thank you Dave and Mary for your support,very much appreciate your advice I feel so much better now x

  • Hugs.

    Dave x

  • It's a distressing subject. Hard to say, it's case by case. How many patients had a minor or major bleed from the main artery whilst on fragmin. Perhaps doctors are ever more nervous to prescribe for fear of litigation. Or the second or the third (repeat) ? My in law who was on warfarin bled to death from his backside (rectal bleed) after his cardiac op done at the reputed hospital. He was 80 yrs old, with a history of vascular disease poss. APS. He literary bled from all his organs towards the end which deeply traumatized his wife. But he may well have had vascular fragility. When patients suffer from connective tissue diseases and other risk factors such as atherosclerosis, high lipids, hypertension, undiagnosed aneurysm etc then it does occur to me if Fragmin would be really safe against these odds. It's best to say, patients would need to be better risk assessed. But if you only have aspirin, you wouldn't need to worry. As for seronegative cases, it will always be the first scapegoat. It only mean, your body does not make too much antibodies. Seronegative does not mean, you have a mild disease.

  • Hi there

    I am 71 and I am on a high level of Warfarin. I guess you are not over 70. I have followed Mary and Dave here for several years and if I were you I would listen to them. I also agree with them that you shall continue with your Fragmin till you see prof Hunt.

    Do not worry! It is easy to say but difficult to follow I understand. Make notes as Mary said. I make notes every day.

    I wish you Good Night from Stockholm!


  • Thank you everyone I feel blessed to belong to a forum of lovely caring people despite having your own health issues you have given me great advice and comfort. Hugs to you all x

  • I have been on Clexane for more than 5 years with few problems. I was put on it by MK who told me one of his patient had taken it for 30 years. He also said it was safer than Warfarin.

    Snag is it is expensive so may be some pressure to get patients off it. Mine is prescribed through GP so coming out of their budget & not Guys. May be worth checking out who is funding your repeats.

    I think Prof. Hunt is excellent and I am sure you can get this sorted so try not to worry xx

  • Hi Sue thank you,My G.P was asked to provide me with my fragmin nearly three yrs ago by Prof Khamashta but said he is unable to do so because he is not licensed . Prof Khamashta said he doesn't need a license and is merely avoiding using his budget to cover my medication. Prof Khamashta had to fight to keep me on fragmin because higher management were raising a fuss about cost ! Dr D'Cruz is great but I could sense that pressure from him to stop my medication. He said my blood test numbers are low and not always positive so he feels I shouldn't be on such high doses of blood thinners. Despite having three miscarriages,two TIAs and all the MS type symptoms he seems to think im at a low risk. Wasn't it Prof Hughes who said numbers don't matter and it's all about symptoms and results with medication ! I think prof D' Cruz and his team are being forced to cut NHS costs by discharging patients and cutting their medication xx

  • " He said my blood test numbers are low and not always positive so he feels I shouldn't be on such high doses of blood thinners. Wasn't it Prof Hughes who said numbers don't matter and it's all about symptoms and results with medication ! I think prof D' Cruz and his team are being forced to cut NHS costs by discharging patients and cutting their medication xx "

    Well, if that's the case, then wouldn't it be better just to say as it is? I dislike this medical lies and excuses ("well, we have had this patient who had a cerebral ought to be cautious as to how much fragmin you are on") I know some medical consultants are exclusively into labs. To be honest, not sure if individual doctors care about patients symptoms as far as I am concerned. I know some / many patients have been helped by certain doctors in the past and, and often recommended on this forum. But if you have no high antibodies, in some of their eyes, you haven't got APS. Some people don't make much and some people do make a lot of antibodies. Is there any research as to the correlation of severity of symptoms and antibody titres? This is needed. However, I have seen studies autoimmune patients with high antibodies or no or sporadic antibodies are not any different and both benefit from the treatments. just your genetic factor in determining this e.g. high or low titres (I believe). I would be surprised if someone like Dr D'Cruz did not know. That explains to me why my fragmin has not been prescribed by GP since August. It's the "costs" and I am suffering (likely visit to ER).

  • Jessie - Have you considered changing GP? Again I would bring to their attention the fact that they are not prescribing the Fragmin on a cost basis. Given that your GP is responsible for your daily care, how does he/she then reconcile the fact that they still have to manage you if you turn up at their surgery with bleed symptoms or whatever from a medication supplied by a Consultant at a Hospital because they themselves have refused to prescribe it! It is therefore hypocritical of them to use the "Im not licensed" escape because what they are really saying is that they don't want it on their budget! Its true that if they sign the script they are legally responsible and some may therefore argue they don't know enough about the condition you have but you could argue do they do that for every patient they have with Diabetes or heart disease and who has AF or other issues and are on expensive meds? Don't let them get away with it or find a more sympathetic GP you can work with.

  • Lets get all this into perspective! First of all its concerning that a Consultant should be telling a patient scare stories about what happened to another of his patients on a certain treatment and if that had an effect on you, then you should complain to PALS of that Hospital, especially IF it is because it is being used as a way of reducing costs, which somehow I doubt, personally.

    Secondly, if you or anyone needs a certain medication which should be prescribed by your GP, then you need to complain in the strongest terms to your practise manager and tell them you will take it up with the CCG. They cannot refuse to prescribe you medication that you have been taking simply on a cost basis if it is in your best medical interest and there is no alternative, or taking a cheaper option would risk your life. It sounds like you have been referred so that Prof Hunt can see if you are a candidate for one of the new oral anticoagulants. At the end of the day it is your body and your decision and you must decide with the information that you will be given by Prof Hunt what medication you want to be on. If you are settled and have had no change in symptoms, the question I would be asking everyone is, why do you want to change my meds if it is not on cost reasons??!! Telling scare stories is not professional and we ALL could be run over by a bus tomorrow!!

    I have low antibody results, in fact they don't even bother to do my blood tests when I see Prof DCruz now. I have been on Fragmin for 5 years with no issues, in fact when I played with the dose I had a return of symptoms. I except that taking something like Fragmin has risks but not taking it has a bigger risk. Having a condition like APS means risks and balances and we have to be grown up and informed about how we run our lives. It also means we have to work with Doctors, listen to them, take their advice sometimes, or stand up to them if we have a gut feeling that what they are suggesting is not right for us. It means trial and error and being prepared to compromise. Yes its scary sometimes but life is like that.

    Do as Mary says, stay on your meds until your appointment with Prof Hunt, if the appointment does not come through by the time your meds start to run out ask for more and chase the appointment. Things will sort themselves out and they will not do anything to harm you! Above all do not listen to any of the above stories about bleeding, old people bleed for many different reasons not just because they are on fragmin!

    Good Luck.

  • Well said!

  • Yes! MaryF

  • Exactly!

  • Sorry about my above rant but it is all very confusing as I said. Saying I suffer with obstretic APS because of my past miscarriages and birth problems doesn't add up if after 22yrs I am now positive to APS and have all the symptoms. I have all the blood test reports, scan results and neurological assesments from kings college plus a copy of all the APS blood tests dr khamashta performed all showing obvious APS ! Yes Prof D'Cruz has diagnosed me with APS but seems to be playing it down saying im at most danger when pregnant because all my blood results in everyday life are low im not at a very high risk. I have seen two consultant neurologists who both comfirmed I have neurological problems especially on my left hand side. Even if Prof D'Cruz in his opinion thinks my brain scan is normal most TIAs don't always in fact hardly ever show up on scans anyway. Without heparin I can hardly function and become very ill so i am worrying myself sick that trying a new medication may not work for me and put me at risk. Im so sorry if you all think i have been rather harsh about Prof D'Cruz but nothing really adds up ! Yes i think he is a lovely man but i could tell he was under pressure from those above x

  • jessie - As I said above I think he is referring you to Prof hunt so that he can get her opinion on one of the new anticoagulants. She may decide after speaking with you, looking at your history and doing her own tests and of course taking on board your opinions which are very important that you are best kept on the meds you are on. In which case they will carry on prescribing you or you will get one of the alternatives. Even the new anticoagulants are as expensive as Fragmin so cost is not going to matter too much. Sometimes when a Doctor has a scare with a patient then he or she wants to be doubly careful with other patients, I therefore think you may want to look at this from the perspective that he is getting a second opinion on you which is not a bad thing. Wait and see what she says first before getting yourself upset. Im sure between you and her you will decide on the best thing for you and you should not leave her room until you are happy with whatever is decided. She is a very approachable lady so Im sure you will be fine.

  • Thank you apsnotfab, You have really helped me to calm down and made me rethink the situation. Im afraid my husband is very unsupportive and I don't have many friends so I get myself all stressed out with no one to talk to. I can't thank you enough for your support and valuable advice x

  • No problem, thats what we are here for. x

  • Agreed. MaryF

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