Hello, im a 23 year old and had Nephrotic Syndrome since...

Hello Kelly.

I also suffer from NS and your going through the same thing as I'am and yes also i keep on asking why me? I'm 24 My last relapse was March of last year and had to take 70mg of steroids daily. i'm off of them knaw completely. my weight has gone up by 2st. the only thing is I have to wait for the weight to go back down automactily. while you was off the steroids for so many years did your weight go down?

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Hi

I have had Minimal Change Nephrotic Syndrome since I was 11, I am now 31. I had loads of relapses up until I was about 20 and since then I have only had 2 relapses (1 very recent).

I have osteoporosis due to long term prednioslone use but this is being treated and I am fit and well. I don't seem to get a relapse while I am on 5mg prednisolone every other day. In Jan 2006 my doctors decided to drop my prednisolone to 2.5mg and I had a relapse within 2 weeks. I have now gone on 40mg prednisolone and I am having extreme difficultly with the emotional and mind torture of prednisolone, I can cope with the increased appetite and the severe cramp I get in my legs. I have forgotten how powerful prednisolone is and I cannot concentrate or do my job while on a high doseage and I am very negative as I am mentally exhausted. I have become very upset/tearful/panic/self aware over the last week while on the high doseage whereas I am normally in very good health. I live a normal life but I don't think I can cope with going on a high dose of prednislone again. I think that everyone who goes on high doses of prednisolone should be aware that it may cause havoc to your mind, emotions and generally makes you useless in trying to do anything while on a high dose.

I hope this is useful to anyone else who has experienced similar problems.

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hey wanted to tell u a way to improve ur life and u can see if it suits u..well there is this device called dupel and another called relion which u can use for the administration of ur corticosteroids since u take a high dose that must b hard to swollow all these pills.this device will help u take ur medicine.in addition to this it will help u decrease the dose u r taking as it will prevent loss of drug.it will work trust me..iam a pharmacist wth a nephrotic syndrome and i was hopeing just hoping to b a volunteer for drug experimentation for nephrotic syndrome patients.so if u can help me like i will always try to help u,ill b grateful.tc.God bless u!

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[quote:bae21b68e0=\"K. L.\"]Hello, im a 23 year old and had Nephrotic Syndrome since i was 2... from an early age i use to take anything up to 16 steriods a day which was a lot for a young girl, which obviously made me eat lots, putting on weight used to be an issue but looking back now it had to be done to make me better. I also took Water tablets to get rid of the excess fluid in my body which settled mainly in the ankles and lower back. Most doctors say that your eyelids and ankles swell up first (which they do) but i found that everywhere felt unusually swollen as well.

I was on the road to recovery and I had not had a relapse in a few years, then I had one in January of this year (2005),and the same procedure starts again.

The information an this site was really helpfull and will help other people with this condition especially if they are new to the condition. I have also searched and searched for a website that people with Nephrotic Syndrome (or a member of their family has the condition) can email or talk to each other about how they have coped with the condition. Also i think for example if a mother/father has a young child with this condition then who best to talk to but the real people that have gone through all what they are about too. When i was younger i never had anyone to talk to other than my parents and doctors, which made me feel and ask \"why me?\".

Thanks for your time

Kelly Lovell.:D

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Hello Kelly

I am 36 years old and i just found out that i have the Nephrotic syndrome.

Now that i have read your story i feel better that i have somebody out their that is going what i am going through.. Please email me so i can get more information about the syndrome.

Thank You

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I've just come across this website and am heartened by the knowledge that other adults suffer nephrotic syndrome. I was diagnosed with the condition at 18months and held on to the likelyhood that it would pass as I got older. For some reason relapses are said to become less frequent as a child gets older and eventually stop. However I contracted haemolytic uremic syndrome, a blood condition that permanently scarred by kidneys. I have to accept that I'll be living with kidney problems for the rest of my life.

Relapsing as a teenager was incredibly difficult because aside from common body and emotional issues, you are faced with a high dose of steroids that cause an increase in appetite, emotional state, fatigue and an abnormal weight gain including puffy cheeks that I and others took to nicknaming my 'gerbil face'.

I am now 20 years old and in my second year of university. During my first year I relapsed twice. In addition to the difficulties of moving away from home, trying to make new friends and adjusting to a whole new independent lifestyle, I was forced to try to overcome my 'gerbil face' and other side effects and to not allow it to deter me from making friends.

There will always be those who comment on your appearance when you relapse but I'm lucky enough to be surrounded by a large group of family and friends who know me for my personality and not for my appearance. Having kidney problems has hurled numerous obstacles at me throughout my life but from them I've become a stronger, more confident person.

It has been almost a year and a half since my last relapse and I retain an attitude of 'positive thinking.' I was used to keeping my hair long in case I relapse again and need to hide behind it, but recently I cut my hair short and have had so many compliments. Life is too short to be hindered by nephrotic syndrome. Should another relapse occur, I'll deal with it. Until then I enjoy living an ordinary life.