Nephrotic Syndrome TREATMENTS

Hi Susan. I know this is an old post but just wondering if you had an update. I've recently been diagnosed myself. Are you on steroids now and has there been any improvement in your condition? I also developed hypothyroidism which doc says is due to loss of thyroid hormone which binds to protein which you then lose in your urine, so yes the two are interlinked. Improving the ns improves the thyroid.

Dear Susan, I was diagoised with Nephotic syndrome in August 2014.

I had previously spent a month in local hospital with swelling of the legs and blood clots. No one made the connection with kidney disease. It took a hospital specialist 3, hours or less to run tests and start medication.

I spent a month on dialysis which was terrifying.

I seem to be OK, now, no dialysis  Steroids 15mgs daily,  and 40 mgs water tablet every other day. Calcium and vitamins twice a day. Do my best to have good diet regular exercise and no added salt.

                                                       Good luck, E. 

Hi Susan, I have been taking 60mg of steriods every day for the past 10 weeks and still no better. The downside is sweating, shakes, muscle cramps and problems sleeping. I have also been taking 240mg of diaretics a day, but still have swelling in my ankles and legs. Went into hospital last month when the swelling was really bad and had intravenious diarectics which worked. My consultant said that my body was not absorbing the oral diarectics which could be your problem. Everyday brings a new symtom, it's very draining and depressing, need to be very positive as the medical profession don't appear to realize how ill we feel. Good luck and try to have a good Christmas and a healthier new year.

this does help I have suffered with thyriod for a number of year over and under now

Hi,

I am 50 years old and have had Nephrotic Syndrome for the last 3 years.

Over the last 3 years Doctors tried me on 60mg a day of prednisolone for 3 months. I gradually got to 10mg then relapsed so back up again to 40mg plus cyclosporin. That treament got me back to 10mg of prednisolone but then I had a relapse. Then tried Levamisole, that did nothing. The last thing we tried was Cyclophosphamide(chemo). That was not very nice but after 8 weeks treatment I have no protein leak at all and no swelling. I am down to 5mg of prednisolone and will gradually come off them completely. I also take just 10mg rampril a day for blood pressure and adcal-d3, but no water tablets. this was in October I finished the Chemo. I still have my hair too and feel great, like I used to three years ago before I was diagnosed.

Good luck and keep positive as Nephrotic Syndrome is an awful debilitating syndrome. Bless you! 

 

Dear All in this thread; I have only just joined patient.info and read your difficult journies.  I was diagnosed with NS in 2011, mine is caused by Minimal Change Disease. I have been lucky with my treatment as was referred to a Consultant almost straightaway. I had a difficult few months whilst diagnosis was confirmed, as I was not allowed any water tablets even though my retention and fatigue were severe. Once diagnosed I was on a high dose of steroids and water tablets, but the steroids only controlled the NS, not cured, so after a relapse and other meds tried, I am now on Cyclosporine (Neoral).  Although a "heavy" drug, it is controlling my NS, and so far, the side-effects are easier to live with than being on steroids, and I rarely need to take a water tablet.  I have been on the Cyclosporine for 2 years and have only had 1 relapse in that time, caused by a flu type virus, which knocked my immune system.  Our immune systems are already compromised by NS, and then more so by the medication. My GP is always happy to check my protein levels if I have concerns, and I see my consultant every 3-6 months for blood and urine tests.  They have all been brilliant. If you are struggling on long-term steroids and/or water tablets please ask your Doctor to refer you to a Nephrology Consultant.  Good luck.

HI Susan,  I am suffering nS since 2011, except steroids no other treatment helped . Trying some alternate treatment