Hi Everyone,
I'm new to this site and I looking to share experiences with any other users who suffer from the kidney disease IGA Glumerulonephritis.
I was diagnosed with the condition around 3 1/2 years ago when protein and blood was detected in my urine following a routine check up. Since then I have been put on 3 forms of medication by my consultant to try and manage the condition (ramipril, losartan & aliskiren). Unfortunately during this period my kidney function has deteriorated from 90% down to 55%. My consultant has talked about the option of taking steoroids and mycophenolate for a 6 month period to try and stabalise the kidney function although he is 50/50 as to whether this will have any affect. Has anybody else had a similar experience and have they been down the steoroid route? If so did they have any success?
During the 3 1/2 years I have seen 2 consultants and both have been sceptical about the benefits of taking steoriods hence why I am trying to get the views of other people with the disease who have taken them.
Any help or advice would be much appreciated!!
Thanks
Jonny
IGA Glomerulonephritis
Moderator: administrator
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Anne in Va
- Posts: 246
- Joined: Fri Apr 23, 2004 11:28 am
- Location: Virginia
Hi Jonny,
I think the replies you receive will probably be approx 50/50 as to benefit/no benefit from steroids. There seems to be very little answer as to why steroids help some people but not others who have been diagnosed with the same disease.
I was diagnosed eons ago as a child with Glomerular Nephritis which fortunately progressed very slowly until my early twenties. Many years and two biopsies later the true cause for my kidney failure was never diagnosed. Many diseases, including a few forms of Glomerular Nephritis, IGA being one, were suspected but nothing definitive. My doctor told me the same thing yours told you 50/50 chance there would be any response. MMF was not around at the time. I decided to go for it. In my case, steroids worked for me. They halted progression of my disease and improved my function slightly for eighteen years. When the disease became active again, I decided to try steroids once more since they worked the first time. Again I had success with remission lasting five years. Two years after the second remission ended I began P.D. followed by a transplant two years after that. I am now 5 years 9 months from transplant.
Steroids, as I am sure you have learned, can have some severe side effects especially at larger doses which I had to take (60 mg). They may have refined meds and dosages since the dark ages! Was it worth it? For me absolutely! Someone who did not have the success I had will most likely have a different story. I did have aching joints, moon face, fluid retention, weight gain, horrible cystic acne, HBP and during the second treatment series I developed drug induced diabetes . All the side effects disappeared as I came off steroids.
Ultimately it is a gamble and only you can decide whether you are willing to give it a try and live with the side effects. I was also fortunate in that although I had bad side effects, I did not develop some more serious ones. Hopefully many others will share their experiences with you so you can make an informed decision.
Best Wishes,
Anne
I think the replies you receive will probably be approx 50/50 as to benefit/no benefit from steroids. There seems to be very little answer as to why steroids help some people but not others who have been diagnosed with the same disease.
I was diagnosed eons ago as a child with Glomerular Nephritis which fortunately progressed very slowly until my early twenties. Many years and two biopsies later the true cause for my kidney failure was never diagnosed. Many diseases, including a few forms of Glomerular Nephritis, IGA being one, were suspected but nothing definitive. My doctor told me the same thing yours told you 50/50 chance there would be any response. MMF was not around at the time. I decided to go for it. In my case, steroids worked for me. They halted progression of my disease and improved my function slightly for eighteen years. When the disease became active again, I decided to try steroids once more since they worked the first time. Again I had success with remission lasting five years. Two years after the second remission ended I began P.D. followed by a transplant two years after that. I am now 5 years 9 months from transplant.
Steroids, as I am sure you have learned, can have some severe side effects especially at larger doses which I had to take (60 mg). They may have refined meds and dosages since the dark ages! Was it worth it? For me absolutely! Someone who did not have the success I had will most likely have a different story. I did have aching joints, moon face, fluid retention, weight gain, horrible cystic acne, HBP and during the second treatment series I developed drug induced diabetes . All the side effects disappeared as I came off steroids.
Ultimately it is a gamble and only you can decide whether you are willing to give it a try and live with the side effects. I was also fortunate in that although I had bad side effects, I did not develop some more serious ones. Hopefully many others will share their experiences with you so you can make an informed decision.
Best Wishes,
Anne
Thanks very much for your feedback Anne, it is very useful. Its great to hear from someone who has been in a similar situation and is willing to share their experiences.
Like you say the final decision will be mine but it helps to make an informed decision based on feedback from both patients and consultants.
Thanks Again!!
Jonny
Like you say the final decision will be mine but it helps to make an informed decision based on feedback from both patients and consultants.
Thanks Again!!
Jonny
Hi mate
I was diagnosed with the same about 3.5 years ago aged 23. Had about 80% kidney function which quickly dropped to about 30% in less than a year.
Went on prednisolone and azathiaprine whilst obviously keeping blood pressure low. Definitely worked for me in the fact that it initially improved function and has kept me off dialysis when I've no doubt I would be on it now without the steroids. Wish I'd started it earlier. Of course you do get some side effects but they surely must be better than dialysis.
Hope this helps
Jonny
I was diagnosed with the same about 3.5 years ago aged 23. Had about 80% kidney function which quickly dropped to about 30% in less than a year.
Went on prednisolone and azathiaprine whilst obviously keeping blood pressure low. Definitely worked for me in the fact that it initially improved function and has kept me off dialysis when I've no doubt I would be on it now without the steroids. Wish I'd started it earlier. Of course you do get some side effects but they surely must be better than dialysis.
Hope this helps
Jonny
I am interested in finding someone who has been dealing with membranous glomerulonephritis. I have also been in partial remission for about 10 years but my Doctor is recommending I go through the 6 month treatment of predisone and cytoxan. Am looking for anyone who have have gone through the treatment again and what luck they had...