Just a quick update, I got my results there and I don't have APS but I do have the strain. Can anyone tell me what this means please?
Just wondered also did anyone ever have any problems with kidneys. As I predicted my kidneys are failing rapidly, they are only at 20% now so the end stage is certainly close.
I am veering towards not accepting a transplant as I hear the strain in APS would prove difficult for the body to accept and not attack the organ. Dialysis isn't suitable for me. Sorry I am full of the joys at the minute! I am so fed up! Have a good day , hope life is good!
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Taigers, good morning, I am so so sorry to hear you are feeling so poorly and fed up - I have not personally heard of the phrase having a strain of APS, so cannot answer your question directly. I will however, go and see what I can find out for you, but wanted to give you a response at first, so you knew we had heard you. Please don't despair!
Have you been to St T's? or if in the UK, could you possible go to Prof Hughes himself on a private basis, even if for one visit?
I will come back to you, but in the meantime anymore info you have may be useful.
I have never heard of the strain of APS and I've worked at the HSF for over six years now. Am very confused - do they mean that you have aPL antibodies but no symptoms? These people are known as carriers.
Sorry to hear about the problems with your kidney and, yes, some APS patients are affected. I am writing the copy for the new website so below is the new information on the kidnesy:
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.
thanks Kate H for posting all the information. It was helpful. To be honest I cannot answer the question if I am a carrier or not.I am finished going to see those doctors all they are doing is upsetting and confusing me for the past 7 months meanwhile my kidney function is getting worse. I must make some enquies and see what to do next. Thanks again and hope you are well
I have chronic renal failure due to APS. How long have you had the renal failure and how long have you been on coumadin? I live in the U.S. and was told by specialists at Mayo and Columbia University in NYC that I needed a transplant and that my kidney function would never improve. My local nephrologist tried to persuade me to hold off but I didn't listen to him and had the surgery at Columbia Presbyterian in NYC. What a mistake! My creatinine was around 3.5 at the time. I rejected the kidney immediately and almost died from bleeding internally and pulmonary edema and congestive heart failure. I was 31 years old and had a one year old baby at home! It was horrendous! Anyway, my point is that I came home after the failed transplant and remained on the Coumadin and my creatinine has miraculously come down to 1.8 over the last 6 years. I can't explain why other than possible long term anti coagulation and good medical management.
Why can't you receive dialysis??? If you have not been on Coumadin very long then I would wait it out. I was called for another transplant a year after the first and decided against it, even after being admitted to the hospital for the surgery. I'm glad I did.
This is a very personal and difficult decision but that was my experience. Hope this helps.
The story is that last year I was fine until I went out one night and was so violently ill all night that was in September and they told me that I had indigestion, which I knew I hadn't.
So I had a biopsy in Dec 2011 and told me that possibly had lupus. Then in January they said no that I didn't have lupus that I had IGA. Then in Feb they said that I didn't have IGA,, that I had Lupus and APS. Then in April they had no results back and now they are telling me that I don't have Lupus or APS but have the APS strain. They also told me that my kidney damage was caused by APS but now they say that I don't have APS only the strain that I never had a bleed but a bleed caused kidney damage. Sorry for the rant!!!! Now they have me on baby aspirin 7.5g.
I am in Ireland so I need to find a new doctor and a new kidney specialist fast to get a second opinion. I hear what you mean about gut instinct I had that back in January when I wanted to get a second opinion but my doctor told me to wait. I too am not going to get the transplant. I feel that it is too risky and that I too would reject it. Nor do I want dialysis as I feel it is another intervention and that if I can't live without it, I would rather not.I would rather take my chances at life. Fair play to you to sticking to your guns this time. God it must be so hard for you, you have been through so much in comparison to me. I am just so sick of those doctors treating me like I can't think for myself. Thanks for sharing your story and hopefully speak to you soon.
Take care, Catherine
I don't know if this pertains to your query....I have APS but I have also been diagnosed with Unspecified Connective Tissue Disorder.....my Rheumatologist says that all of our organs are made up of connective tissue....so I assume that what can appear as a Kidney (heart, etc.)problem could be caused by a Connective Tissue
problem....perhaps I am connecting (so to speak) the wrong dots...Just a thought
Hi, u poor thing, you need to get some clearer answers than this. I think last time u mentioned dr plant at cuh. I don't have personal experience of him but my friend is under him (non aps related) and she thinks he is very good. You mention iga..... My mother has this and had a very successful transplant about 5yrs ago (in Australia), I didn't realise until recently but I think some drs say that iga falls into the autoimmune disease family and this could be why u r getting confusing info..... They need to tell u exactly Wat is wrong with yr kidneys & explain Wat u can do.
I wish u well, we are having worrying time with my daughters kidneys at the mo & this is the only reason I know of the connection with iga and autoimmune disease....
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