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Hughes Syndrome APS Forum

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Has anyone experienced Renal problems with APS

SteveRN profile image

I was recently admitted to hospital with acute renal pain on admission I was assessed and admitted to the surgical assessment ward after being given oromorph in A/E with a diagnosis of ? Renal stones. The dose of oromorph did not alleviate my pain so the dose was increased and a. CT scan was arranged for the following morning. My INR was 2.8 my previous one the week before was 3.8 and my D-dimer was normal my normal dose of warfarin is 9mg but with the drop I said that it should be 11mg I suggested the drs consult the haematologist but they left me to manage my own medication of warfarin and aspirin. The next morning I was violently sick and felt like passing out so was prescribed ondansetron for the nausea, my CT scan showed no stones and the pain settled so I was discharged with no follow up. I asked the registrar if he could repeat my INR before my discharge but he said no because it would take several hours to get the results back. I explained to him that it was OK because I would get an email at home when the result was available and I would then log in to NHS DIRECT to. Get the results so I would know what dose of warfarin to take but he said that was not possible consequently I ended up going home on a weekend without getting my bloods done. I am still getting pain in my back associated with passing urine which my GP thinks is muscular.

kind regards

Steve RN

14 Replies
KellyInTexas profile image
KellyInTexasAdministrator

Oh, I am so sorry this has happened to you!

Yes. The kidneys are vulnerable to clotting. Beyond that I am not familiar with any details.

It is my feeling you need be assessed by a renal specialist who can consult with your APS hematologist.

I do know that it can be dangerous to biopsy the kidneys of an APS patients- it can cause bleeding and clotting complications.

I hope someone here can advise you on protocol on how to handle this- as I’m not in your country.

At the very least- how can you get an accurate INR? My feeling is you could need LMWH to bridge with.

A bleed was ruled out, yes?

SteveRN profile image
SteveRN in reply to KellyInTexas

Hi Kelly Yes there was no signs of a bleed I regular check by dipstick checking my urine at home for any signs so far it has been negative. My INR is now back within range and I have a rheumatologist appointment soon so will discuss problem with him.

Kind regards

Steve

HollyHeski profile image
HollyHeskiAdministrator

I have regular renal failure with my blood tests. Told to learn my 'range' but also told many years ago that this is where my APS weakness will lead.No to stones and no obvious cause.

Your history and job gives you advantage- what are trying instincts telling you?

Personally I would pursue further and hopefully your INR is in range.

SteveRN profile image
SteveRN in reply to HollyHeski

Hi HollyHeskiI intend to look into getting a renal referral and so far my INR is in range.

Kind regards

Steve

I assume they did kidney function bloods such as Egfr and Creatinine etc? I get these bloods done 3-6 monthly on LMWH as well as anti factor Xa to keep me in range. Fortunately my Haem is Professor at the hospital near home and I'm no longer shy about asking for him if I disagree with ED doc's. Due to the wonder of the internet all my specialists are able to access all recent blood tests so I can get a pretty quick reply to bloods as I get them all done at the same Lab so values are pretty constant. Kidney values are a little low but as long as they don't drop further he is happy with me as they are. I don't have any symptoms-pain etc. but it was found on a routine blood I had done about 2 years ago. Not on Warfarin but do you perhaps have a home visit from a nurse to check INR? Unfortunately micro clots can play havoc with different parts of the body and cause pain. I do hope you will get an answer soon from your specialist.

Dear Steve

I experienced that horrendous pain which is so painful and yes makes you vomit.

When I was rushed to hospital they tried many times to find kidney stones. To their surprise no stones were found. Over the next 3 months I had 2 operations where they inserted 9” stents from the kidney to the bladder. Inside the Ureter. With this stent inserted the pain stopped. I eventually had my right kidney removed as they strongly suspected cancer. There apparently was no cancer found. They did find 2 lesions on the Ureter they thought caused by inflammation

This only happened to my right kidney thank goodness. I have Systemic Lupus APS and MS

I also suffered lots of micro clots afterwards

Especially when the catheter was in.

I am functioning well with one kidney. The op was In April 2020. I do have a haematoma on the inside scaring but living ok with it

The year before the kidney op I had similar with my mitral valve. A replacement Mitral valve and / new arteries. I look well and manage my life well. Though I have slowed down and take care of myself I get through ok. I am female 63 now I live in Aus.

Do a lot if your own homework, learn as much as you can. Try for second opinions if you can’t get any real answers

Good luck with it all

Linda

Ozchick profile image
Ozchick in reply to LindaMorrell

When I read your story I feel so lucky that my troubles seem so minor in comparison. I recently saw my Cardio and my Mitral valve has hardly change from the echo a year ago-so much so I don't need to go back for another year unless I have problems. I would have thought taking out a kidney a pretty drastic step but when you have that much pain I can understand doing anything to make it go away. Keep well!

SteveRN profile image
SteveRN in reply to LindaMorrell

Hi LindaSorry to hear about the pain that you had to go through it must have been quite traumatic I hope that things only improve for you from now on. I certainly will do as much research as possible the problems are the doctors at my GP surgery are now in a group and you don’t always see the same person and they do not understand APS so it is difficult getting them them to realise the complications with the condition, it’s a case of perseverance to convince them, it has taken me 6 months to get them to agree to let me self test with my INR.

Kind regards

Steve

LindaMorrell profile image
LindaMorrell in reply to SteveRN

Steve I moved 2 hours North. I was sad to move away from my excellent GP. She did leave me on her books. I remember I wasn’t happy with the practice in the village I now live in. I asked a specialist to advise me on a doctor. This might help if you are close to other towns and villages where there might be more choice. Even health unlocked users might be able to advise the GPS they use near your area.Try Google to ask about GP s with specific interests in what you need to know

Bit of a minefield

Good luck

Hi I am sorry I do not have experience of what you went through but I do have APS and it is my understanding that D dimer tests are pointless for APS as they give incorrect readings for us 🤷🏻‍♀️ might be worth researching that or speaking to your specialist incase you are admitted in an emergency in the future and you can pass the info to the staff who are testing you.

I hope you feel better soon

KellyInTexas profile image
KellyInTexasAdministrator in reply to Bobbydoodle

This is also my understanding regarding D dimers. I can’t find reliable up to date publications.

I have APS and also have minimal change disease of the kidneys which is linked to APS, might be worth having a google of that. Mine was diagnosed following a kidney biopsy

MaryF profile image
MaryFAdministrator

I had one pregnancy with fully blown renal colic, it went on for months and I was in and out of hospital, it then settled down again, nobody ever got to the bottom of it. I hope you go back to the hospital if you feel ill, you need far ore investigation and by a medical consultant who actually understands Hughes Syndrome/APS. MaryF

I have a friend who has had acute renal pain recently, and another friend who is a consultant urologist, so this whole area has been discussed a lot. Some notes from that:

- stones is always going to be first differential, especially if pain self-resolves

- stones can resolve/pass, if CT shows no stones it doesn't mean there wasn't one before

- stones can get stuck further down as well, CT should (assuming they've scanned and looked at all the right areas) eliminate that possibility (something difficult to do with ultrasound)

- but stones isn't always the answer, from CT it turns out my friend has a mass on the kidney, most likely cancer

- but again, CT should have turned up any kidney mass / cancer in your case

Then adding in APS...

- kidneys are prone to clotting, clots may be painful, clots can self-resolve

- d-dimer is not always reliable in APS patients

- number of other possible APS effects on kidney, may or may not result in pain: APS Nephropathy, Renal Artery Stenosis, glomerulitis

I'll second Kelly's warning about kidney biopsy - I had a lot of kidney tests when first diagnosed and possibility of biopsy was suggested at one point. I asked my wife (who is medically trained) about the risk: "needle biopsy?" "yes" "nah, shouldn't be an issue"

Then I showed her this video: youtube.com/watch?v=7_jJP5j...

Response changed to "do not consent to kidney biopsy, ever"

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