Sticky Blood-Hughes Syndrome Support
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Well my trial will soon be over and feel no different ... can anyone tell me why !!!

gd morning lovelies been on fragmin 10000 for 5 weeks now and still got banging migraines, bouts of dizzy spells and generally feel YUK ... small blisters type things on my tongue sore gums , over heating body at times, very dry eyes, and front of legs the list goes on , so fed up with myself ,cld just give up , going to see my consultant on frid... liver levels have doubled since last blood test at renal unit last thursday , but the gd news no leakage in the kidneys so if we can keep them contained @ stage 3 then i will be one happy lady .... have a merry xmas one and all ... xxx

8 Replies

Hi there, sorry if I have asked you all this before, are you gluten free? have you had recent tests of Vitamin D, B12 and iron, plus have you tested your Thyroid beyond the unreliable TSH test, which misses many people, and does not reveal the entire picture. I do all theses tests below, and more, which I pay for myself!

Also we are all different sometimes it takes longer with others on Fragmin, and also if any of the levels above are out, you will still have issues. MaryF


Thankyou for your kind reply Mary to be totally honest hun , i dont know what exactly ive been tested for , have had so many its all to much to take in , friday will only be my 3rd meeting with my consultant Dr Hoda El-Mahrouki, i just know that things aint been great ,i have multiply clots on the brain and kidney problems , now liver levels aint so gd , but the thinking is the fragmin is the possible cause , wishing friday was here , i have so many question i want to ask ... x


Personally I do not believe it is the Fragmin as both Dave and APsnotFab have not heard anything bad about Fragmin. Is said to be as good as Warfarin as it is an anticoagulating drug. It should help avoiding more clots.

Ask for copies of all the blood-work you have done and ask if they have taken bloods for Sjögrens. If you had an APS-Specialist it would be much easier and I guess you see her now on Friday. Ask also about the liver and kidney.

Please let us hear how it goes for you and Good Luck on Friday!



Please ask for the above tests in addition to what has been done, ie the B12 D, and Iron, and think of doing the Thyroid tests other than the TSH yourself privately.. MaryF


Thankyou ladies ... lure i have been to the renal unit kidneys are doing ok at the moment no protein in urine so thats a gd sign , yes the fragmin will stop any further clots i agree , but she thinks it has raised my liver levels , just feeling total crap at the moment , sorry for moaning lol


I find it useful to take with me to the doctor a list of questions and also a list of issues. It's easy to get distracted, and after listening quite intensely as the doctor explains something and then the doctor leaves the room and suddenly remember "Oh! I meant to ask him about that!"


sounds like me have found that the medication lorazepam 1mg take 2 when you get up and one in the evening work really well at stopping the headaches and controlling the dizziness

for the first time in over four yours i feel pretty close to normal


Hi packerfan,

So glad to hear this!

I guess you have not met an APS-Specialist in the US who gave you that drug. Are you still on Fragmin and Plaquenil for APS and Lupus?

Best wishes also to your wife from Kerstin in Stockholm