Leukemia +

[LesJames]

Does anyone have this illness as well as Hughes? If so does it affect your INR? and which came first?

TIA

[Lure2]

Hi,

I have read that you have been diagnosed by Prof Hughes! After that did you get an APS-Specialist?

I wonder if you today have a Doctor who understands your situation. We have to be properly anticoagulated and I wonder if you are that. You also have Temporal Arteritis, Fibromyalgia and you think you have Lupus but your Rheumatologist does not think so.

They want to take you off Warfarin to test your blood. I wonder if that means that you are not anticoagulated during that time? Hope they know that we can never stop anticoagulation as that could be dangerous for us with APS. If I go under an INR of 3.0 I have to take a Fragmin-shot. I am absolutely not a doctor but when I read what you have written I get worried.

I do hope you have an APS-Specialist who i willing to sort out your different symptoms and diagnoses for you.

Best wishes from Kerstin in Stockholm

[LesJames in reply to Lure2]

Thank you Kirstin, No I do not have an APS specialist. My INR has just started to be erratic lately and my levels have been 7.6. In order to get it to drop they want me to stop taking warfarin for a day or two depending on the level. I always insist that I must not stop it completely because it goes to 1 extremely quickly. I like the idea of having heparin as well for events like this. I am currently on 7.5 per day which is the lowest I have ever had to take my normal dose is 12 - 15. My medical centre called late Friday night asking me to arrange for another FBC as the last one showed irregularities. Finding someone who understands Hughes is difficult enough but nigh on impossible in South Wales.

[Lure2 in reply to LesJames]

As I told you I am not a doctor but I am very interested in this illness as I have myself and I have been on this site for several years and learnt from other members about different problems.

What we have found (included prof Hughes) is that we need all the time a doctor who knows what to look for re symptoms but who is also responsible, not only for our INR and anticoagulation, but who can refer to other Specialists who send the answers back to him/her. That way you can have the best treatment.

I do not know what FBC is.

If you change your different drugs, also different days, it can be very difficult to control your Warfarin. Have they talked with you about Fragminshots instead of Warfarin? If you selftest like me, write every change down and also the numbers. It is not so important how much warfarin you take but the INR is exstremely important.

It is really a fight to get the competent doctor and the right treatment, but we need that.

Kerstin

[LesJames in reply to Lure2]

Thanks for your message. FBC is Full blood count. I do record all the data. I also have learnt that certain foods cause my INR to change, Broccoli and stilton soup, Bananas and other very green veg because they are full of Vit K. I'll ask about the frogmen shots. I think I will also lend my doctor the Book by Professor Hughes, without trying to become a web doctor know it all (LoL). But if we do not inform ourselves then who will.

[Lure2]

I always eat 10 brusselsprouts if my INR is too high (I test my warfarin every second day at home) and in 15 hours I have lowered my INR back to normal. I eat broccoli and spenach-leaves every day because we need K-vitamin even with APS on Warfarin. If the INR is very low I eat no K-vit vegs that day. I take 5 mg of warfarin and change my dose very seldom and if I must I usually change 1/4 of a tablet up or down. If my INR goes under 3.0 I take a Fragmin-shot. This way I should always stay anticoagulated which is very important for us with APS. I know we are individuals even with the same illness so we may react different because of a lot of things. It is a trial and error like with the drugs sometimes.

Are you going to lend the book written by prof Hughes to your Rheumatologist? I instead suggest you ask your GP for a referal to one of the Specialists on the list. hughes-syndrome.org

We only have one life.

[Ozchick in reply to Lure2]

I like your brussel sprouts management. I love them but my husband hates them (I think he was forced to eat too many as a child.) I was making them for myself and asked him if he wanted any and said they were lovely tossed in butter and garlic. He told me he prefers them tossed in the bin!!

[MaryF Administrator]

I hope you can perhaps travel to the nearest Hughes Syndrome/APS specialist, as it would certainly help not only you but other medical professionals involved in your medical care. MaryF