acute nephritis questions frustrated

[scoots4491]

back in september i had routine blood work which showed that i was in kidney failure. creantine 4.93. no symptoms. felt fine. was getting ready to play 18 holes of golf when the dr's office called and told me to go to the emergency room. I had been taking allipurinol for 10 years or so, sometimes 2 alleve a day off and on 5-6 years and mesathelamine for ulcerative colitis off and on for about 2.5 years before this. my last blood work was done in November 2017 and creantine was 1.4. of course no Dr said anything to me or expressed any concern. November 2019, i had a biopsy which confirmed Acute Nephritis no signs of scarring or permanent damage. They said this is from an allergic reaction to 1 of the medicines. i havent taken any of those medicines since this happened. they put me on 60 mg of prendisone 11/11/2019. creatine improved to a best level of 3.44 but would jump around. as soon as i started weening off prendisone my level shot back up. Went to cleveland clinic 1/9/2020 and the blood work showed my auto immune disorder in full affect. no lupus. they put me on cell cept which a transplant rejection medicine. they feel my auto immune disorder is interfering with the prendisone being able to work. best level i have reached is 3.07. this was back to back weeks. 23 GFR. getting extremely frustrating. wondering if anyone else has ever experienced this and what their journey was like. this has turned my world upside down as i had no idea anything was going on and still dont. i feel fine.

[jaibo]

I think you should wait a little more time to the meds make effect in your sistem. I have nephritis and my treatment was too with prednisone 50 mg a day and 500 mg of mycophonolate mofetill (active ingredient of CellCept) and works very well at the first month and go on on good prognosis since the first month till today. I hope you get better soon.

P.D. Sorry for my English I`m not so fluent because I`m Mexican

[scoots4491 in reply to jaibo]

thanks for the reply jaibo. i'll keep you posted. i'm happy and sad i found this forum. happy there are others who care and respond, sad that so many people have kidney issues and disease.

[jaibo in reply to scoots4491]

You`re welcome and I`ll recommend you to have a good attitude, get rid of sadness and stick to the treatment doctors give to you, eat healthy and work out every day, at least 30 minutos. My doctosr says 50% diet, 30% medicines and 20 exercises is the formula to a better prognosis.

[scoots4491 in reply to jaibo]

so last month, February blood work was best i have had, creatine was 2.8. after this blood work we dropped prendisone from 60 mg to 50 mg and kept cell cept at 2000 mg a day. went last thursday for monthly blood work and it somehow went up to 3.12. i didnt change anything diet wise etc. only thing that changed was amount of prendisone. they did put me on blood pressure medication starting monday. they seem to think that may be a factor? waiting to hear back from dr at cleveland clinic. getting depressed.

[WYOAnne NKF Ambassador]

Sorry you are having all of these issues at once!

Hope you stopped taking Alleve! NSAIDS are not good for your kidneys, should only take Tylenol. The Cleveland Clinic is "tooted" as one of the best Medical Centers in the country. I think you need to give the meds awhile longer. Be your own advocate. You should be asking what the plan is going forward. Have they referred you to a nephrologist? You should be seeing one.

Take care and keep us posted.

[scoots4491 in reply to WYOAnne]

thanks. i have been seeing a nephrologist since i was in the hospital for 5 days when this happened. cleveland is only 100 miles away so i went there for a 2nd opinion. i havent taken any meds other than prendisone and cellcept since this happened. except, this i was taking mesalthamine for UC. they were giving it to me in the hospital too. if you look up apriso the 1st thing it says is can cause kidney issues. SMH. i was on that until mid-end of october when the local nephrologist said stop taking that. The dr at cleveland clinic said we need to give the cellcept more time since my auto immune disorder was so prevelant in the blood work.

thanks for the kind words. i'm glad i found this site. this has been very difficult for me. mentally exhausting. my blood work bounced around weekly until the last month so maybe it's starting to work. but when i get the results i never know what might show up. changed my diet, lifestyle. i would like to get back to the 1.4 that i was in fall 2017. that was 56% function.