It's really great to have found this site, even though I'm across the ocean from most of you. My question is this: Last fall I had a kidney removed due to carcinoma, was very lucky as needed no further treatment. However, they just found out that I have stage 3 chronic kidney disease. My symptoms are all there. Am beginning to wonder if my APS is involved with this somehow, but not quite sure. I'm Primary APS. So my question is not really clear, sorry, but generally wondering about CKD and APS and any connection.
Any thoughts or feedback would be appreciated..... thanks!
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Leigha
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Welcome and glad you found us. So sorry to hear you having all these problems.
It seems there is a link between aps and kidney disease, maybe due to sluggish blood supply, lots of info available on hughes-syndrome.org, the Hughes foundation website.
There have been others on here with Aps related kidney disease. maybe your docs could liaise with St Thomas's hospital in London, for ideas on treatment plans etc.
Thanks so much for your reply. I've found minor links on the web but not much in personal stories, a bit on this site in my searching though. Have long been familiar with the hughes-syndrome.org, it's great but can't find anything there. However, there is sooo much which can go wrong with our bodies, right! And to be thankful with what is still right.....
Am waiting for my appointment with nephrologist. 'Tis difficult at times when we are feeling so poor, to get through the day, the hour, to just get through it, to think positive..... but that is my goal.
Welcome, glad you found us. I am sure they will get to the bottom of it, APS can do all sorts of unpredictable things at times! Have they also checked you for Lupus? Keep us posted on any progress made as it helps all of us. Best wishes. Mary F x
No, I don't have Lupus - they've checked me many times. Did check positive for MS, but no longer -- which is strange, but fortunate. I also have hypothyroid and low adrenal, as I see you do. I take very low dose cortisone which has made all the difference, are they putting you on that?
Thanks for writing and good wishes and hugs to you!
I really feel for you with 35% function left, do you know what your GFR is? and do you have to take any meds for this, or use diet and keeping blood pressure down?
So there does seem to be a connection with APS. Very sorry to hear about this and hope they are able to keep your blood pressure down. Appreciate your feedback.
I have no mess for my kidney they are controlling it by keeping my blood presuure down and obviously on warfarin.
Hi Leigha
Here is the latest copy from the new website which should be launched this autumn - hope it helps:
The kidneys
In the past, kidney involvement in Hughes Syndrome patients was poorly recognised. However, it is now known that kidney disease is not uncommon and can, in fact, be the first and only sign of the condition. Early detection of kidney problems often improves the outlook for many patients. Symptoms usually include high blood pressure and pain in the abdomen or back.
The kidneys can be affected in several ways:
• Renal artery thrombosis
The renal arteries supply a large proportion of blood to the kidneys and, occasionally, a clot can form in an artery which then blocks the blood flow to the kidney. This can cause raised blood pressure, abdominal or back pain - in a few cases, it can be life-threatening. Treatment options include anticoagulation and angioplasty - an invasive procedure where the artery is mechanically widened.
• Renal artery stenosis
Hughes Syndrome can cause the arteries leading to the kidney to narrow - known medically as renal artery stenosis. This narrowing of the renal artery can impede the blood flow to the kidney resulting in high blood pressure and can lead to kidney failure if it is not treated. If diagnosed quickly, anticoagulation can have a very positive effect; however, if the blood pressure cannot be controlled or if the kidney function deteriorates, then invasive angioplasty treatment may be necessary.
• Renal vein thrombosis
This is where a blood clot develops in a vein that drains the blood from the kidney. The main symptom is usually sudden abdominal pain and the clot can often damage the kidneys, causing them to leak large amounts of protein into the urine (known medically as nephrotic syndrome). Sometimes these vein clots can permanently affect the kidney function and lead to high blood pressure. Treatment with oral anticoagulants such as warfarin can be effective; however heparin injections can be ineffective as heparin binds to an enzyme which is lost through the leaking protein.
• thrombotic microangiopathy
As well as blood clots occurring in the major ‘motorway’ renal artery and veins, the blood can clot in the specialised small blood vessels of the kidney. This condition can lead to low platelets, spots of bleeding under the skin (known as purpura) and changes in renal function which, if left untreated, can cause permanent damage.
Thank you so much for this information. It is by far the best have read. Have copied it for my doctor. Now my question is answered. I hope this is not what is going on for me, but we will find out.
I love how we are suppose to have high blood pressure with kidney problems, but as you, I have low blood pressure, low thyroid and low adrenaline. My Dr asked me how I wake up in the mornings, but can't help me much. Also on the cortisone as you, but effects have worn off. Caffine does nothing! I have tried aderal and love it but can not get it prescribed since I do not have attention deficit.
My Dr told me that the Kidneys will probably go and to keep an eye on it. May not be the answer you would like.
How much cortisone do you take? That has made such difference for me; I take 22 mg, divided 3 x daily. Plus 2 types of thyroid. My blood pressure went up last year, when got kidney cancer, and it is 140/70 so no longer low. but they aren't worried about it yet.
Have you tried different dosing with the cortisone? Our adrenals are so key in how we feel, well, a part of it all.
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