Sticky Blood-Hughes Syndrome Support

Do GP's deal with your prescription and treatment once you have a diagnosis?

Hi all, just having a think...funny the questions that go through your mind, and I'm jumping the gun as I havnt even seen Prof Khamashta yet...if you are diagnosed with APS, what happens usually with your treatment in terms of prescriptions and such?

In a hypothetical way, say if I'm diagnosed, I presume I can see Dr Khamashta at regular intervals for check ups at my own cost but in regards to getting/accessing warfarin/heparin etc how does it work? Does prof Khamashta communicate with your GP and discuss what is to be done and then your GP gives you the prescriptions on repeat and monitor you? Also do most people find that GPs accept the diagnosis and treat you respectfully as they would if id seen an NHS consultant? I think I mean do they respect private Dr's findings or do they see it as going out of their loop if that makes sense? Thanks everyone x

8 Replies

I can't speak for the UK but my GP handles my prescriptions and monitors my INR and he is very ready to accept what the specialists say


That's reassuring to know Tassie, I hope it's the same willingness to accept things in the uk. Thank you xx


If you have a private consultation your GP doesn't have to prescribe for you.

I was lucky when I saw Dr Khamashta privately he gave me a private prescription for Clexane which would have cost me over 200 pounds for 1 months supply. Fortunately my GP agreed to provide it for me.

MK will write to your doctor who would be very unwise to ignore the recommendations of a senior consultant.

Let us know how you get on xx


Im hoping that if I am actually diagnosed with APS then my ammunition will be the fact my rheumatologist has failed to diagnose it and this is why I had to go private, it is the truth. This is all ifs and buts at present and they may tell me I'm just mad as a March hare but I do feel the pieces of the puzzle fit well to APS. I do hope if this is the case my GP will willingly prescribe me otherwise I do not know how I will cope xx


What should happen is that Prof Khamashta will write to your GP and recommend to them what medications you should be taking and ask them to prescribe them. If your GP is helpful then they will accept what the Prof says and if you are to be put on warfarin will refer you to your local anticoag clinic who will deal with everything there for you. He may when he writes invite your GP to refer you to St Thomas in London to the APS Clinic there under him so that you could see him on the NHS. They may then deal with everything including your warfarin providing you are able to get to St T easily and perhaps have local checks of INR when you need to. It just depends on co-operation between everyone.


That sounds like a good way of doing things Apsnotfab, I can manage travelling a couple of times per year to London but I could not afford to pay for my prescriptions privately. I have read about some people being signed off from St Thomas' after a short while which they have been disappointed by, is this correct?

My GP is a lovely guy who does listen and is not quick to brush me off, he patiently listens to me and I am quite down to earth and honest in the way I speak with him. Recently after going to him and questioning the blood results he said he understands why I am worried as it is not a common Cold we are talking about and what has happened is serious, this gives me some reassurance that I can put my confidence in him, I think I'm just so used to feeling like a hypochondriac that I expect every barrier xx


Hello APsnotFab, just a query regarding your comments. As I understood

things, Professor Khamashta only now deals with pregnancy and APS

on the n.h.s. at St.Thomas. Another Consultant would deal with a patient

who is not pregnant, menopausal woman.


St T is a bit of a mystery to me and seems to make up things as it goes along. Ive heard all sorts of rumours about this and that happening and this Doctor only dealing with that etc. All I know is that I am not pregnant and have never been under PK and Im still seeing him! If you are referred to him then my understanding is that he can accept you onto his clinic.

I have been told that the discharges have stopped but the proof will be in the pudding! It will be interesting to see if that will continue to be the case.

JP83- if you have an understanding GP who is just in need of a bit of education and guidance, which it sounds like it is to me, then hopefully when you see PK, if he confirms things and writes to your GP he will follow his instructions. I would then if I were you become your own informed advocate so that you, together with your GP, under the guidance of PK can manage your condition together. Thats how many of us manage. You can ask PK about getting referred to him on the NHS and see what he says.


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