How to transfer from one Consultant at St. Thos, to another within the Lupus unit.

[Zamalek]

Initially diagnosed with Hughes Syndrome at London Bridge 5 years ago, and started on Warfarin 3-4 range following a blood clot

in my right eye. Because of financial reasons I was then transferred to St.Thos. where I now see a Dr.

who reduced the INR range to 2-3. I have an appointment in October, when I hope my MRI scan which in

fact was done in 2012, but as yet has not been reported on, will be reviewed.

Two weeks ago , I developed significant weakness in my legs and the legs swelled up, this was accompanied

earlier by feeling generally unwell, as if I had the flu. However I felt seriously ill for 24 hours, whether this was

blood pressure I do not know. I have developed a buzzing in my right leg and foot, and also a weakness in

my right wrist which has been with me for a couple of years, The vibe I got on my last Appt. at St.Thos.

was that I would not be going back there for much longer. However I feel that some of these symptoms

are new to me, and have I developed Lupus? I also take Plaquenil, which after about 4 months improved me

tremendously, however that improvement has vanished and the Cognitive Impairment is very bad and I

feel concerned about my ability to function with daily paperwork etc. My husband died 10months ago , so I

have had an enormous amount of stress. Is stress likely to have impacted on these conditions, and if I am

discharged by the current Consultant, can I transfer to another one with the shrinking unit. I would appreciate

some advice from fellow sufferers.

[MaryF Administrator]

Hi there, it sounds as if the reduction range in your INR has not suited you, You may need to go back to London Bridge to get reassessed. Many patients are being discharged currently from St Thomas' you will see another post on here with people petitioning the changes. I suggest you write a strong letter to St Thomas, enclosing the original instructions from London Bridge regarding your anticoagulation and outlining what is happening now. Best of luck. Mary F x

[Zamalek in reply to MaryF]

Thank you for your advice, I will have to see what Oct.8th brings. Do you know if any Hughes

patients will continue to be treated at St.Thomas Hospital. I also realize that the guidelines for

treatment of APS regarding warfarin is to recommend an inr between 2-3, as between 3-4 brings

no fewer clots.

[Lure2]

Hi Zamalek,

I can not help you with the doctor problems as I live in Sweden. But I have APS and I am on warfarin since 2 years.

I know stress makes this illness worse and as I could read you have enormous stress right now. I am so sorry for the loss of your husband and I can only imagine how you fell about everything else around you and your illness.

I totaly agree with Mary that it is important to keep an INR high enough.

I wish you the best of luck in the October meeting.

Kerstin

[Zamalek in reply to Lure2]

Thank you for your kind remarks and advice. I will question the INR range on my next appointment

on 8th October, and see what the outcome is. Are you keeping a stable INR, do you self -test, and

do your symptoms fluctuate week by week? Best wishes. Zamalek

[Lure2 in reply to Zamalek]

Hi Zamalek,

I selftest since one year because it is difficult to keep in range with APS and expecially as I have all the antibodies and Lupus Anticoagulant. Yes even if I selftest it is important to be constant in what you eat specially with K-vitamin!! I now know how I work but if I change medicin I sometimes have to change the intake om warfarin-tablets. Otherwise I practically never change the tablets but only change my K-vitamin intake.

Dr Hughes talkes about the doctors beeing afraid that the INR will go too high but the risk for us is rather the risk to have a new clot-incidence it it is too low. I am on 2,5 - 3,5 but I keep the higher level and sometimes it goes higher without no bleeding. I have had high blood pressure (I have pulmonary embolism) but my blood pressure was ok when I started warfarin.

You are welcome to come back to me in Stockholm

Take good care

Kerstin

[Lure2 in reply to Zamalek]

Hi Zamalek agin,

It is not Prof Hughes that is afraid that the INR goes too high but the other drs that are not real "APS-doctors". That is important to say.

After I started warfarin all my neurological symtoms diasappeared but not quite balance and memory. What is done is done!

I have read 6 English books about APS. The two first exstremely good.

"Sticky blood explained" by Kay Thackray and "More sticky blood" also by Kay Thackray.

Kerstin