Advice please on anticoagulation medication.

At present I am on clopidogrel for my hughes diagnosed by Prof Hughes.

I have been feeling very unwell mentally and physically to the point of despair.

Out of desperation I introduced a 75mg aspirin together with my clopidogrel of which I confirmed with Professor Hughes first.......always seek medical advice before taking such action this is very important.

The two meds together cleared my dull fuzzy senile head, helped enormously with my balance and general functioning.

I'm in need of further anticoagulation but my rheumy in Bath tells me he does not wish to take responsibility for it of which has infuriated me.

I have a rather complex medical history that many consultants seem to find to challenging or they simply just do not understand.

I have now requested to be seen by another rheumy who is closer to me recommended by a friend.

I would prefer not to be put on warfarin if I can avoid it, my question is what other options are out there ? ? ?

Any advice please as I feel I really should not be having to use my own initiative where my anticoagulation is concerned.

Jill

13 Replies

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  • Hi, perhaps a trip back to London Bridge would be in order, you could get your GP to do all your tests locally first including D, B12 Iron and Thyroid. MaryF

  • Hi Mary,

    I am seen at guys by Dr D'Cruz but as your aware appointments are constantly being pushed back and its now a year since I saw him.

    It is difficult for me to get to London and My consultant in Bath is dragging his heals so I have asked for a referral closer to home. By doing so at the very least I will be able to be seen by a specialist nurse.

    It is further anticoagulation I am in need of but I am reluctant to be put on warfarin.

  • I suggest you write a very firm and urgent letter/email to the clinic at Guys marked for the relevant consultant, (use secretary's email address). MaryF

  • I am waiting for his sec or should I say stand in sec because his is on leave to ring me back today.

    Yes I think I will email them sometimes we need to take the bull by the horns.

  • I am under prof d'cruz and I take aspirin, clopidogrel and hydroxy and I'm still symptomatic but they refuse to go stronger like heparin or warfarin.

  • Hi, I am on clopi, aspirin and rivorixaban. Was on clexane, asprin & clopy for 8 years previous.

  • Hi Holly,

    Thank you so much for your reply of which is interesting.

    Maybe the combination your taking might be of benefit to me.

    I was so desperate the other day I took 2 aspirins with my clopidogrel. ( This is not recommended without supervision so please seek medical advice before taking such an action )

    It would be so nice to get a little bit of my life back and to be able to function.

    My brain scans are showing damage to the small blood vessels and brain shrinkage of which is no surprise if the blood is struggling to get through them.

    I cant even get an appointment with my Gp i have been fobbed off with a nurse who is not able change my medication.

    It is all so very frustrating. Jill

  • Hi,

    If you have had both arterial and venous clots you could also try LMW Heparin.

    Kerstin

  • Hello Kirstin how lovely to hear from you.

    I had an ITA some years ago so was treated with aspirin to start with but due to it affecting my stomach I was taken off of it and was left for several years without blood thinners.

    Hughes had been completely overlooked back then.

    I have wondered if a trial of heparin would be beneficial to me.

    Jill

  • Wouldnt take double aspirin esp with your 3history of stomach probs. I live in Devon and travel up to Guys. Im under Prof. Hunt for my hughes and Dr D'Cruz fòr my ss, although havnt seen Dr D'Cruz for over 10 years. Maybe you can get an appoitment with the heamatologists under Prof Hunt. They really do know there info on hughes so worth travelling. (I couldnt get on with warferin).

  • I am now prescribed lansoprazole to protect my stomach and this seems to have solved my stomach problem.

    I am amazed at how better I felt taking the extra med.

    London visits are difficult for me because of having to leave so early in the morning.

    To attend my last appointment I had to leave at 6-30.

    I am not that mobile in the mornings, I had to start getting ready the day before and my blood pressure was sky high when I got there. I had sat so long in the transport vehicle I was crippled trying to get out of the car with pain and stiffness. :-(

    I need a consultant nearer home where I can get to see a specialist nurse.

    It seems such a battle for us all to get properly medicated when in hind sight it is just common sense to me.

    Bloods thick and sticky its struggling to get through arteries and in need of thinning......sounds easy doesn't it. :-) Jill

  • I read on your good answer from HollyHeski that you also have very high bloodpressure. That is dangerous when we have Hughes Syndrome at least according to my experiences with PEs and Heart/lung-issues.

    Try to get a Specialist even if it is a long way to travel as he/she can give you advice you really need and the right bloodpressuredrugs and also take the right bloodtests as to other autoimmun illnesses going hand in hand with Hughes Syndrome.

    Perhaps you could also have LMW Heparin if you have difficulties to selftest. Advice to an other Doctor near to your home how to treat you. We can always call the Specialists but do not see them more than perhaps once or twice a year. Hope it is like that in your country also.

    Wish you well!!

    Kerstin

  • I am pleased to say my blood pressure is now under control.

    I have had many blood tests and indeed I do have many autoimmune diseases, lupus, hughes, sjogrens, thyroid, parathyroid the list is endless.

    I just wont a consultant nearer home who can monitor me correctly and a specialist nurse within my reach in case of a crisis.

    Going to London is fine and yes they have the expertise but the wait in between appointments is ridiculous.

    I had MRI scans on my spine and brain done in June And I am still waiting to go back to guys to discuss the results !

    The NHS service here in the Uk is not what it used to be, I am just another number on a very long list.

    Take care

    Jill

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