Kidney Problesm, possible new diagnosis

Hi all I hope your all well at the moment it is a while since i posted - I was hospitalised wit Kidney pain in May and when they did a scan they found inflammation that was too much for it to be an infection,and a thickened Ureter, I have constant blood in urine and wee out blood clots. They said it isnt typical presentation of cancer so im relieved. I have ben collapsing at home with severe dizziness and giddiness and kidney pain but been able to get on with it apart fom the tiredness,however I had a biopsy of the kidney ureter and bladder and it seems to have triggered a major relapse on whatever is going on - bleeding in the kidney,horrendous pain (i would swap and have childbirth twice over) and blood clots trapping the ureter, i was taken by ambulance as i couldnt breathe and the pain was unbearable - it took 5 days in hospital and antibiotics to help with the inflammation before i could come home. A major collapse in hospital where my colour drained and my lips went blue so at least they have seen an episode i suppose. The doctor initially said that it was possible wegeners,bergers or amyloids, but now they have just talked about mixed connective tissue disorder as though that is something i already have and think it is all linked - im very scared for the future and looking like im lazy as i feel like im in the middle of having flu - im so tired and no energy and in pain all the time and my kidney literally bounces in my side and goes in to spasm - has anybody else had this? I think immunosupressants is the way forward and i hope they will start them soon as i really need a bit of hope at the moment, even my eyesight has gone all blurred again,and i just feel like im going backwards. it shouldnt be too long for the results now i know i have to be patient, but my consultant said once you have one auto immune disorder the likelihood of having more is pretty certain. Im hoping the biopsy gives answers but he doesnt seem confident it will, and after a 7 year journey around the system to get my diagnosis of hughes im worried i have another fight on my hands to get answers to this and another diagnosis and i dont have the energy for it and im worried for the future x

23 Replies

  • Hi emmaj,

    I feel so sorry for you when I read this and can imagine (try to at least) how much pain you have going through lately!

    Have they switched you over to Heparin from warfarin because you can not be stable on warfarin? Have they discussed the possibility of selftesting? Easier to have control of the INR. As you say yourself I think you are too low in INR and that can be a reason to some of your troubles with the eyesight and dizziness etc.

    I can now only say that I hope the doctors treat you in the best way as I guess they do.

    Please let us hear how it goes for you. Best wishes from me in Stockholm.


  • Thank you hun, I was switched to heparin for a while for surgery and stayed on it because of the internal bleed - im now back on warfarin but its been unstable for a while which is an added stress - im just off for my first test x

  • Hi Emma

    I was going to ask you the same question as Kerstin.

    Did you feel better on Heparin than you do on Warfarin? I certainly do and would not willingly go back on Warfarin.

    If your answer is 'yes' then ask them if you can go back onto Heparin to see if this helps with your problems. I used to get incidents of blood in the urine on Warfarin but never on Heparin.

    Please remind me where you are from.

    Keep in touch.

    Best wishes.


  • Ive asked in the past about heparin - i do feel better on it less headachhes etc,but they wont due to bone problems it can cause. im in shropshire xx

  • Hi Emma

    Your Drs need to get up to speed with modern, low molecular weight Heparin, such as Fragmin, which I have read has been shown not to cause bone problems and may in fact protect against them. Prof Hughes told me about this too and the Royal National Hospital for Rheumatic Diseases, in Bath, also agree and support my GP in prescribing me Fragmin long term.

    If you feel better on it, hold out for it and try to get a specialist who understands this issue.

    Best wishes.


  • Thanks - im due back to london in september so i will ask about heparin, i know my consultant here will be asking my consultants in london about the best way forward, but london take a long time to confer - its took 6 months and i still havnt heard whether i can start paquenil or not so i think its long road before i even get treatment started - thanks for your replies x

  • Go over your meds and check the (can't remember word) stuff that can go wrong. they had me on a med(?) and it was real good on my arthritis until it shut my kidneys down. Check over your meds an see what they are. GoodLuck

  • Ive stopped my aspirin as i know that it doesnt help internally already but great idea x

  • Have they tested you for Lupus as its possible this could be a Lupus flare. Im not one for advocating steriods but a short sharp small dose is sometimes warranted for a week or two to settle things down. I cant understand why it should take so long to prescribe plaquenil either. This is a standard treatment so I agree with Dave your Dr's should really be getting up to speed on your treatment.

    Im assuming if you say you are going to London you mean St T. They have an emergency Clinic every Thursday morning. You should push to be put onto it. This just needs a phone call from your Dr as it is as Ive said an emergency Clinic for those that need to be seen quickly. Notes can be faxed through.

    I would call them yourself and ask to speak to somebody and be really firm about being seen as it is your right.

    Good Luck with this.

  • Thanks for that I had no idea we had an emergency clinic at st t's - thats good to know - i'll let my consultant know here - he wants me to wait for my biopsy results to come through before conversing with london as to what to do next. He has told me he is questioning lupus although it has previously been ruled out by london. Interestingly when I was in a&e the staff were talking about me and calling me the sunburnt lady as i had bright red cheeks straight across my nose and cheeks and all over my chest. I can only assume in london i have been lost in the system as ive waited since april to start plaquenil x

  • That's another reason why they should get you into the emergency clinic then.

  • great ill give it a try,thanks x

  • Really common to have Sjogrens and Also Thyroids issues, and of course the idea of a check for Lupus! MaryF

  • Yes mary it seems we are always blessed with more than one condition! My consultant seems quite on the ball so im confident he wont leave a stone unturned,and with the advice of st t's im sure we'll get somewhere soon x

  • I have APS and have had kidney issues for many years. My nephrologist said I have level 1 Chronic Kidney Disorder (CKD). in 2009 while having scans done for my ovarian cysts, they incidentally found two tumors in my right kidney. I had one biopsied at the National Institute of Health in 2010 and was diagnosed with Papillary Type 1 Renal Cell Carcinoma. After the biopsy, I had a complication and suffered an internal bleed that formed into a large hematoma. I was hospitalized for a few weeks afterward. The reason I mention this is because while I was in the hospital my body went crazy. My ears and nose swelled immensely and were bright red and extremely sensitive to the touch. They brought in all of these specialists. Finally, my hematologist said it was polychondritis or multiple inflammations of tissue. I've had issues with costochondritis (inflammation of connective tissue in the chest) for years. I've tested positive for blood in my urine for years but the docs kind of dismiss it due to the fact I'm on Coumadin and have kidney cancer. I hope you get the answers you seek and soon.

  • Wow that is a lot to go through, i hope you are ok in yourself. Thank you for taking the time to reply. Ive had blood in my urine for years - it was only when i was hospitalised with severe pain that they did a scan and i got my diagnosis of nephritis (kidney inflammation) and saw my thickened ureter - a cancer specialist said it wasnt a typical presentation of cancer - but the biopsy will rule it out for definate. I had the biopsy and a big bleed after it which resulted in the same, blood clots blocking the ureter and it was causing back pressure on the kidney - i could actually see my kidney pulsating and spasming - it does seem that inflammation everywhere is a typical presentation with auto immune things doesnt it? In one way im glad that this episode has at least shown itself in tests as usually it seems with us hughes' that nothing shows up and we look like hypochondriacs which is a scary position to be in - but in another way im scared of what it has done, or what other diseases or damage it has caused - i wish you well on your journey too - thanks again for your time x

  • I forgot to say too ive been having episodes of collapsing at home severe dizzy spells and b=nausea and loss of appetite

  • I hope you begin to feel better....I was diagnosed with Unspecified Mixed Connective Tissue DIsorder 4 years

    ago....I was 1st diagnosed and treated for APS (320 mg aspirin did the trick....I am grateful),,.....felt great

    but then started to feel overwhelming fatigue,malaise, sever flu like symptoms....basically horrible

    MY Rheumatologist then diagnosed me with Unspecified Mixed Connective Tissue Disorder ( One

    marker was inflammation).....She Prescribed Plaquenil 100mg 2x/day......and I have been feeling great

    since then....I have minor "flareups' if I overdue the 'stress' in my life.....and I take an over the counter

    antihistamine if I work in the yard..(not often).just in case a mild allergic reaction triggers an immune


    My MD does blood work every 90 days and so far everything is ok

    I send you my prayers

  • Thank you so much, my inflammation apparently was far too much to be just an infection,and after the biopsy i have felt like i had flu so tired and drained it was unreal - no energy at all- i do generally feel tired and unwell all the time but lately its been twice as bad and i and m y consultant thinks its some sort of flare - apparently normally a persons inflammation levels are 0-4, and mine was 117 - i do hope you continue to be in control xx

  • My biopsy came back and not cancer - just a lot of inflammation, my consultnt fitted me in his clinic tuesday coming so im hoping it'll be a consultation that ends in treatment starting,,and not just a follow up where they say we'll see you in 6 months and see how you are!!x

  • Hi emmaj,

    If I were you I would listen to what APsnotFab has said and visit the Acute clinic you have at St Thomas as soon as possible. Especially if your Consultant does not do anything now .By the way is he an APS-doctor? He does not sound like that.

    You must have your right as a patient to be treated. This illness can hide in different parts of the body. Probably you have got Lupus also. The doctors do not understand APS. So few do.

    I am sure you will get much better when you get an APS-doctor that starts the right treatment! Go for that other APS-doctor and treatment now!

    I wish you well! Best from Kerstin

  • Thanks, i have an appointment on 12th sept in london so im quite confident that even if my consultant doesnt start treatment then london will - ill let you know how i get on, and if my consultant here doesnt know what to do then i may well get him to fax london and get me in to the emergency clinic in london x

  • Does anybody have any experience of emailing dr's at the lupus centre - i want to send an email explaining that i see my consultant here on tuesday and that im still waiting for a response from london about plaquenil and im hoping it may trigger doctors to speak to each other?

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