nephrotic syndrome

[viktoria]

Hi all,
need some advice. About 12 weeks ago i had swollen ankles and hands and puffy eyes. Was getting worse daily to a point when i felt so ill decided to see dr. Urine test showed i was leaking protein and blood. Prescribed anti biotics. Next morning i was like a beach ball with slits for eyes and short of breath, straight to a and e where it was decided that allergy to antibiotics. High bg , 28, and ketones. Admitted overnight and told to look after my control, not eat so much. Next day received call to say i needed to go back to dr. I was diagnosed with nephrotic syndrome. Have since had a million blood tests an last week a kidney biopsy. I have never felt so ill, constant pain in ribs, extreme. Lethergy, nausea which has now progressed to vommiting, rash all over my body and joint pain. I have been prescribed ramapril and flusomide but fluid not receeding. I have never felt this ill. Not been to work for 4 weeks and gained over 2 stone. I have gone from working full time with a family and hectic lifestyle to being sofa bound sleeping 17 hrs a say in 3 months. Does anyone else have any experience of nephotic suyndrome and can expect things to get better. I'm worried that my current condition is not diabetes related and I'm not getting answers from dr. Any insight would be gret
.

 

[Riri]

God that sounds awful for you - really hope things start to improve soon. Sorry I can't offer advice as I don't know anything about the condition. Here's hoping someone comes along soon. Wishing you well.

 

[viktoria]

God that sounds awful for you - really hope things start to improve soon. Sorry I can't offer advice as I don't know anything about the condition. Here's hoping someone comes along soon. Wishing you well.

thankyou. I hope too that someone can shed some light!

 

[fatcat62]

Things will improve with medication. But it will mean long term use of diuretics, BP meds, probably including Ramipril and Valsartan to reduce BP. Statins and Ezetimibe to control cholesterol. Sorry to be bearer of bad tidings


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[viktoria]

Things will improve with medication. But it will mean long term use of diuretics, BP meds, probably including Ramipril and Valsartan to reduce BP. Statins and Ezetimibe to control cholesterol. Sorry to be bearer of bad tidings


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Thanks for the advice. Although the thought of more long term meds is not great, its good to know things will get better. The thought of this level of nausea and discomfort carrying on much longer is difficult to deal with.

xx

 

[fatcat62]

It took some time for the Frusemide to kick in and to get the water off. But after that I felt fine. Just the meds can be a pain - sometimes feel that if you shake me I'd rattle lol You may find the tiredness continues with the statins hun. One of the side effects of statins can be lack of energy but some evidence that Co-enzyme Q-10 can help. I asked my kidney specialist about getting them on prescription. After he'd reviewed the evidence on internet he prescribed them. Q-10 can be as much as £20 for a bottle of 30 high dose capsules.


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[collectingrocks]

Sorry to be the bearer of bad news but as you now probably know, this means kidney damage where the glomoruli (kidney filters) do not function properly. This will naturally lead to odema (water retention) and swelling.

This "may" be the beginnings of ESRD (e.g. stage 2 or 3) but do check this with your GP. I hope s)he can give you better news and what the long term prognosis might be

 

[eddie1968]

Viktoria I have had Diabetic Nephropathy for over a year now and on occasions have had oedema in the legs and ankles which can be disabling. I am on Ramipril 5mg and Spironolactone 100mg (a potassium sparing diuretic) to get rid of excess fluid.
Top tips: Even though it might be very painful, WALK as much as you can and you will notice you run to the toilet and pee more as this is your body reabsorbing fluid and excreting it. Also when sitting down prop your feet up on something. Let me know how you get on.

 

[tiwawane]

Hi all,
need some advice. About 12 weeks ago i had swollen ankles and hands and puffy eyes. Was getting worse daily to a point when i felt so ill decided to see dr. Urine test showed i was leaking protein and blood. Prescribed anti biotics. Next morning i was like a beach ball with slits for eyes and short of breath, straight to a and e where it was decided that allergy to antibiotics. High bg , 28, and ketones. Admitted overnight and told to look after my control, not eat so much. Next day received call to say i needed to go back to dr. I was diagnosed with nephrotic syndrome. Have since had a million blood tests an last week a kidney biopsy. I have never felt so ill, constant pain in ribs, extreme. Lethergy, nausea which has now progressed to vommiting, rash all over my body and joint pain. I have been prescribed ramapril and flusomide but fluid not receeding. I have never felt this ill. Not been to work for 4 weeks and gained over 2 stone. I have gone from working full time with a family and hectic lifestyle to being sofa bound sleeping 17 hrs a say in 3 months. Does anyone else have any experience of nephotic suyndrome and can expect things to get better. I'm worried that my current condition is not diabetes related and I'm not getting answers from dr. Any insight would be gret
.

english is not my language, but I'll try
The best I can tell you because I did, and I am doing it still now. first, make your diabetic test each time you feel a change or you have to eat something and make correct sugar level or and take your insulin. second, by treating the cor, or the foot keratosis deeply for a while all your gland, your skin, your kidney and your eyes will be clean of bad keratin or bad keratinocyte. I use a solution alkaline, I put my foot in it for 30'' and I put some hot water and I crunch as long I have dead skin taking out. I repeat it two times a week and as long as the hard skin is coming back. I should take a long time but your kidney will become better after 3 months.. that's the best treatment for diabetes complication reverse. The only one, and it's work.

 

[tiwawane]

Viktoria I have had Diabetic Nephropathy for over a year now and on occasions have had oedema in the legs and ankles which can be disabling. I am on Ramipril 5mg and Spironolactone 100mg (a potassium sparing diuretic) to get rid of excess fluid.
Top tips: Even though it might be very painful, WALK as much as you can and you will notice you run to the toilet and pee more as this is your body reabsorbing fluid and excreting it. Also when sitting down prop your feet up on something. Let me know how you get on.

english is not my language, but I'll try
The best I can tell you because I did, and I am doing it still now. first, make your diabetic test each time you feel a change or you have to eat something and make correct sugar level or and take your insulin. second, by treating the cor, or the foot keratosis deeply for a while all your gland, your skin, your kidney and your eyes will be clean of bad keratin or bad keratinocyte. I use a solution alkaline, I put my foot in it for 30'' and I put some hot water and I crunch as long I have dead skin taking out. I repeat it two times a week and as long as the hard skin is coming back. I should take a long time but your kidney will become better after 3 months.. that's the best treatment for diabetes complication reverse. The only one, and it's work.

 

[viktoria]

thanks all for the advice. I am now on my 2nd week in hospital where they are trying to find a reason for the pain and vommiting. Iv flusomide meant i dropped 2 stone which is the First positive. Hope to go home weekend and try and get my life back together. They have discovered that i have membranous nephropathy which is not linked to diabetes. Not sure how to take that. Hopefully next post will be good news that i am home and on the mend. Xxx