Hi,
My mother was diagonised for Nephrotic Syndrome with the below symptoms.
- Albumin (3+) in the urine.
- Edema (swallon leg)
- fatigue
- less appitide
Testing Done so far:-
Blood and Urine samples tested
24 Hrs Urine sample collected (seen more of Albumin 3+)
Biospy recommended.
At this point can any one suggest where we are? and is there any specific treatment? Or any advise in this regard would help us a lot.
-Prasanna.K
Hi Kprasanna
it seems your mother is about to have some treatment with the biopsy and I assume she has been given some Prednisalone? This should reduce the albumen and once that has returned to normal, she will then gradually be weaned off the Prednisalone. She should avoid salt in all forms as much as possible and not drink too much while this is going on. My grandson has had this since he was a baby and he is now 19. One slightly encouraging news is that when you contract Nephrotic Syndrome as an adult, it seems to be easier to treat. I know someone who eventually grew out of it entirely. This is not always the case with children unfortunately. Your GP should be able to give you some fact sheets with dietary advice. There is also lots of advice on this site too. I have received help and encouragement with regard to my Grandson.
i wish your mother all the best,
Valerie
Hi. I'm 19 and I've suffered from nephrotic syndrome since I was 12. I relapsed every year until last year. A pretty strong indication something is wrong with the kidneys is the protein in the urine. They tend to use immunosuppressants like prednisolone (steroids) and MMF to treat nephrotic syndrome. For me, I responded very well to these drugs so it's quite easy to treat. However as I mentioned above for many years the remission stage was only short lived. But now on MMF I am doing very well.
Hope this helps
Rhiana x
Thanks Vallerie. My mother was administered with Prednisolone for one week and its better now after 2 days of consumption. My worry is how long this has to be taken. My inference on this sudden cause of this disease was due to intake of some ayurvedic medicine to boost her immunity.
So intake of this prednisolone will make her better after few days or does she needs to take this for a prolonged period.
Do we need to worry about any thing on her creatinine level now?
Please advise?
-Prasanna.K
Hi. Every case is different. When my grandson is weaned off his medication, he is well for some time. sometimes as long as12 months. However, he has an extreme case, and has to take a low dosage every other day. Once your mother is in remission, she should check her protein level every few days, just to be sure. If she sees a sudden rise, then she will need to go back on the Prednisalone. I am not sure I understand what you mean by creatinine levels. I hope this is of some help.
Thanks valerie for your time. Today we checked her protein level still we see 4+, so we are going to consult our doctor. One more thing we see her blood urea level has raised a little. Is it the case that happens normally or is it something we need to worry about.
-Prasanna.K
Hi Prasanna K
i think you are right in seeing your doctor about your mother's levels. Whenever there is a rise, it must be addressed. Also the blood urea level should be mentioned to him. It may relate to other issues going on that also need to be dealt with. I hope all goes well with her. My best wishes,
Valerie x
Thanks valerie for your healthy words. Yes we consulted the doctor and he said it would take atleast 4- 8 weeks to get the protein level under control. Also he said due to the drug prednisolone it would have blood urea raisen. And nothing to worry about.
I am hoping for good sign this week test.
-Prasanna.K
Your doctor seems to be keeping everything under control thank goodness. I will keep my fingers crossed for you both. With any luck, we may even have a little sunshine!
Best wishes
Valerie
Valerie,
We visited doctor today and he has prescribed Telmisartan in addition to prednisolone. Any idea on this. I see this is ARB in the internet.
-Prasanna.K
Prasanna
i have not heard of that medication, but it may be specific to your mother's condition. May be worth researching it on the Internet?
Valerie
Hi Valerie. Just a query about fluid intake while on prednisone. My Dr hasn't advised but I note you say to restrict fluids. I'm worried about side effects of the dreaded pred but some advice on the net is to drink lots of water. Of course some people take it for conditions other than kidney so maybe fluid isn't a problem for them. Would you say cut down on liquid. I have frusemide too but it's not v effective. Also worried about weight gain. 😞 Any advice?
Many thanks
Hi Eva
First the weight gain. From my experience with my grandson, the weight is a problem while he is on the steroid. However, in his case, once he has been reducing the dosage for a while, the weight seems to gradually come down. It does take time though and I do know he is acutely aware of it, though he never mentions it. He always avoids family photo sessions at this time! As for the intake of fluid. As you say, perhaps it is different is some cases. He was advised not to drink too much because of the fluid retention. Best ask your GP for your particular case. Good luck.
Thanks Valerie. It's early days for me so I'm wary and just want to keep my job going whilst on the treatment ( adult onset MCD) I hope your grandson improves. Young people can grow out of things so don't give up hope. I know you're advising him on diet so that can only help. Best wishes
Eva
All I can say is that I TRY to advise him! He is 19 now and is determined to live normally, without his friends knowing of his problem. That probably means eating the wrong things when they are out together!! Fortunately, he eats healthily at home and with us. I guess that is all you can do really. Best wishes.
I've been researching on line at avoiding weight gain whilst on the dreaded pred. There's a lot of evidence for the effectiveness of low carb diets as the affected metabolism can't cope v well with carbs whilst on pred. I'm going to try it. I'm already trying gluten free which means I don't eat as many carbs anyway. I think when you're 19 though that's not much fun! I can remember some of the rubbish I ate at that age when Vesta meals were considered exotic!
Hi Prasanna,
I have has NS for the last three years and tried Cyclosporin, Levamisole and in October my Consultant treated me with Cyphosphamaide. That is the only treatment that has managed to get me into remission and I am just gradually weaning off steroids. At the moment just taking 2.5mg a day but three years ago I was taking 60mg a day. So there will be a treatment that will help your Mother. Everyone is different so keep trying and the best thing to do for your lovely Mother is lots of love and take her out as much as possible.Even just a ride in the car into the countryside with a pic nic xx