Sticky Blood-Hughes Syndrome Support

warfarin & kidneys continued

Hi all, thanks for your replies the other day. I have seen my consultant and my ureter is too large and inflamed, I have to have an urgent biopsy and maybe a stent fitted,despite losing my notes,and being only able to upload one image on the computer he was able to make an opinion that it is another auto immune disorder,they are looking for amyloids,wegeners or bergers,and possible lupus,he will consult with london,but will be looking at immunosupressants, went to a&e on wednesday but unless its an infection they are limited,and not really interested as im under a consultant already,so for now just dealing with the pain and dizziness and tredness and try and get on with it. My INR is very unstable,too low at the moment instead of previously too high so i think some of my problems are because my warfarin is too low,but i cant stabilise my levels with this kidney problem at the moment. I may ask if i can switch to heparin until its under control x

5 Replies

Hi Emma

Good luck and certainly my heamaturia was stopped by switching from Warfarin to Fragmin.



I am sorry that you have so much to deal with at the moment. Hope it will be better as soon as possible. Yes try to find a drug so you do not have to think of INR just now. Try also to get some rest if it is possible.

Take good care! Wishes from Kerstin in Stockholm


thank you both xx


Well, it does sound as though your doctors are responding to your isues and are ready to set out on a diagnosis hunt. That is good news.

Good luck,



good luck,hope you feel better!


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