Advice please on Aps medication

I am not tolerating warfarin very well due to its sodium content.

I have just spoken to the haematology nurse to explain how poorly I was on Friday night with the increased dose of warfarin 5mg my INR was1.3. The nurse has told me there is nothing else they can offer me other than the warfarin and went on to real off names of anticoagulants they are unable to get hold of.

I have waited 5 weeks to see a Dr because I was in need of a double appointment to discuss a number of issues. After a long wait I am pleased to say my appointment is this Wednesday, I shall most certainly be asking to be seen by a haematology consultant and not just as I am now by the nurses.

I shall travel to Oxford if the need be to be seen by somebody who understands the condition. I am on antibiotics so as advised by somebody on here I to asked to be put on LMH whilst being anticoagulated but this was refused.

Any advice would be welcomed or the name of a really good specialist in Oxford would be a great help.

Thank you

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43 Replies

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  • Jilly, You MUST call back the anticoagulation department and insist that you are either put through to the haematologist (there is always one on duty) or they give you some LMWH.

    You must tell them you have a clotting disease, they have taken you off of ALL anticoagulants and put you on warfarin which is upsetting you and the dose isn't high enough to have any affect on your disease anyway! Tell them that you are now on antibiotics which will have the additional affect of lowering your INR still further!!!

    That means they are putting you at risk. They have a DUTY OF CARE to make sure they treat you acceptably and not put you at risk. If they refuse to put you through to the Hemo tell them that you are holding them responsible for any adverse events that happen to you and you will be making a complaint to PALS.

    If none of that works, go to A&E!!!

  • I rang back to haematolgy and spoke to the same nurse as I did this morning. I asked as they are a haematolgy clinic why they were unable to arrange for me to be seen by a consultant in the field of anticoagulation.

    It has to be done by my Gp. I got the same answer when I asked for LMWH. I then asked what am I supposed to do whilst I am being referred to a specialist because I am at risk of clotting, same reply speak to your Gp on Wednesday when you see him.

    I have just come off a treiage call with my Gp he is furious I have not been seen by a specialised consultant. He referred me on the 19th of July.

    The Dr has told me to make a complaint this I am in the process of doing. They have totally ignored my Gps request for me to be seen by a specialist and have but me in the hands of inexperienced nurses.

    I am tamping with anger..........calm down Jilly or you will blow a fuse.

  • i am pleased you have your GP on side, this is very very serious, and you can always show your GP our list of recommended consultants which is under pinned posts over on the right hand side of our forum. Lynn (APsnotFab), is right regarding being assertive, I have to be like this for myself and all my children, otherwise we get nowhere with our medical care. If needs be take along somebody you trust to back you up, at the appointment. MaryF

  • Sorry Mary for my late reply I have only just spotted your reply. I thought you were away enjoying yourself. I now how hard you have fought for yourself and offspring but be shouldn't have to battle like this now.

    I have had a look at consultants but for the moment I am sitting tight to see If I get referred to a consultant as my Dr recommended at my local hospital. As for a new rheumy I was not impressed with the local one so shall be searching to replace him.

  • You need to be referred to somebody off our list otherwise it will be back to square one again, that list is there not only to help you, but your GP also, best of luck. MaryF

  • Good Morning Mary,

    I wouldn't say the Dr was on my side although he did sound nice on the phone.......that was as good as it got.

    My INR result yesterday was 1.6. I asked the Gp about introducing some LMWH but he replied, they would only give if I were pregnant. At 66yrs that's highly unlikely.

  • Hence WHY you must have a Hughes Syndrome/APS specialist guiding you and your GP. MaryF

  • I wish it was as easy that easy. I thought I were being referred to a specialist but an error has occurred and I have been placed in a haematology clinic. It seems I am paying the price for the hospitals error.

    Looks like I am back to the drawing board.

  • You need to attend your surgery with your most trusted friend, colleague, relative etc, and be very firm, explain you don't wish to make a formal complaint, unless you really have to, and are hoping you can be referred to one of our recommended specialists, no doubt you will have the list to hand! Or you will have to pay and go privately to The London Lupus Centre. A lot of us have been in your position and come through the other side. MaryF

  • I have raised a complaint with Pals.

    I havn't a printer so unable to print your list. I'm unable to locate the list on site. I have looked at specialists on the pinned section but all that came up was others messages. I googled specialists but getting referred to one does not help my present situation you can wait months to be seen.

  • Bless you.

  • Hi again Jill,

    Could you take a bus or train or drive to that Hematologist or Coagulation clinic and tell them what APsnotFab said 3 days ago?

    They have taken you off all anticoagulation and the Warfarin does not suit you and is quite too low and you can not selftest either. Could not the GP help you and call the clinic? He might understand that you really need help at once.

    You need LMW Heparin(Fragmin) now!

    Kerstin

  • Kerstin I have already told them.

    I have raised a complaint with pals. Haematology are telling me my levels are rising nicely. When I told them I am in need of LMWH I was told my previous medication of aspirin and clopidogrel will still be in my system..........It was stopped two weeks ago.

    My Gp told me yesterday LMWH would only be offered if I were pregnant.

  • Hi Jillmo,

    Please listen to APsnotFab and INSIST on LMW Heparin (Fragmin) when your Warfarin is too low!

    Kerstin

  • Oh Lure, I have been insisting all morning it's falling on deaf ear. I am now making a complaint. I always listen to the admins they offer reliable advice. Bless you all.

  • Yes, please do. They do not understand our blood-disorder at all. Go to A & E as the complaint will take too long.

    Kerstin

  • A & E is a nightmare you can sit waiting for hours. My last visit was a 12 hour wait.

    Do not worry Lure I am in control of the situation ( I hope )

    and have no intention of putting myself at risk.

  • Good for you!

    Kerstin

  • But you are at risk!

  • Jilly, I think you should include in your complaint since when can a nurse make a decision about prescribing medication such as LMWH, a life saving drug in our case, without consultation with a Doctor/Specialist? To deliberately block you from at least a telephone consultation is very negligent to say the least. This nurse is not qualified to make these types of decisions and should be brought to account.

  • Well said!

  • Many thanks InSpain

    Your absolutely correct. I shall be ring pals this morning they were supposed to ring me back with a case number and have not done so as yet I will add your comments to my complaint.

    Bless you

  • You little beauty I shall most certainly be using your words in my complaint. Very well written. Thank you X

  • I would also state in your letter that if you have any clotting issues or complications this will be on them.

  • Specialist nurses can prescribe medications they are nurse prescribers and often know more about the drugs and are fully trained to do so

  • I agree, however, they cannot block you from speaking or seeing a doctor/specialist of your choice. If a patient is questioning their knowledge, as in this case, doesn't receive satisfactory results the nurse specialist has a duty to go to their team manager for advice. The team manager is usually a doctor/specialist. They need to be brought to account. They need to realise that, as in Jilly's case, their decision is wrong and very dangerous too. Leaving somebody without anticoagulation IS negligence when they depend on it not to clot.

  • Gilly you have good advice from others - my question- can your GP prescribe you some LMW Heparin (Fragmin) while your INR is so low, esp. as he sounds like hes on your side?

    Good luck with your battle xx

  • But it does sound as if they can't/ won't prescribe other anticoagulents (like rivaroxaban). Warfarin is the gold standard, but others can work.

    If your warfarin isn't working well enough, then bridging with LMWH would be the usual response - I doubt the nurse doesn't know, she seems to be blocked by red tape.

    Good luck

  • I am being told all the anti coags contain sodium of which I am reacting to so I am now rather limited to what can be prescribed.

    I have had miles of red tape.

    Its not just red tap in the way it's COSTS.

  • Reply to CormorantWatcher

    The only bridge my anti- coagulation team know of is London Bridge.

    They havn't a damned clue.......perhaps if they visit London Bridge they can pop in and learn a thing or two from our very own and very dear Professor Hughes. :-)

  • THIS IS TO ALL,

    I am amazed at the response and concern from you all I could sit here and cry it has touched me so much.

    All I can say is I truly feel amongst friends and I thank you all from the bottom of my heart.

    This really is a most wonderful site that has helped so many.

    Bless you all. Xx

  • Thank you - we have all been where you are at some point in our lives. Which is why it is so supporting to share our knowledge xxx

  • Yep. Health authorities and cost. Maybe sodium is a binding agent in the tablets? If so heparin is the alternative, but injecting long term has issues.

  • I just can't believe anyone is leaving you with such a low INR. Most of us take Clexane when we fall under 3. Most feel better over 4.

    For me when my inr is 4-4.5 I'm ok when it's between 3 & 3.9 I feel ill, hurt all over, suffer horrendous headaches/migraines but when it is below 3 I just can't get out of bed for the pain and headache.

    I do hope they sort you out quickly. I just can't understand why anticoagulant clinics find it so hard to understand APS.

    Maybe there should be a standard paper and help line for medical professionals (inc nurses) involved with APS patients.

    Good luck 💋

  • WendyWoo

    I can understand them being cautious but I do feel LMWH should be given whilst going through this process.

    I have had an ITA but no clots as they term them, surely it was a clot that caused the ITA !

    Just had nurse call to take my blood so it will be interesting to see how much my INR has risen.

  • I agree! U do need something!

    What causes a TIA then? I thought a clot too 💋

  • I would definitely print out this post and add it to your folder.

    Do u mind if I ask u what adverse symptoms u get when u r taking warfarin?

    My normal dose is between 18 & 20mg and I am not sure if it's great for me!

    It's hard to tell if symptoms are due to ; APS fibromyalgia lupus or sjogrens 😮

    Thank you x

  • Do u have ur inr tested at ur gp surgery?? And who doses u once u have had it tested? If it's the gp then they can put u on fragmin along with the warfarin according to ur inr result if it is them.

  • I have a nurse coming out to do my bloods at home. Yesterday my INR had gone up to 1.6 of which they seemed quite pleased about.

    I asked my Gp about LMWH but he said they only give it if your pregnant. :-(

  • Right ok???!

    I do inr clinics and we often have to put patients on fragmin with the warfarin if their inr is too low. But I suppose I can't talk for them but that does happen and it's the gp that doses the patient and prescribes the fragmin.

    Obviously it's up to ur team tho x

  • It is possible they don't want to do fragmin as maybe then they can't see which drug is having the affect on the inr, some gps will give it some won't . Some may prefer to just increase the warfarin and hope that that does the job

  • Its pure lack of knowledge of the condition in this case. The Haematology nurse has told me an ITA is not a blood clot that is why they are not prescribing LMWH.

    I have not been seen by a Dr or a consult. I am being medicated by the nurses.

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