Looking for anyone with this disease

[Lianelady]

I have a very rare kidney disease. fibrillary glomerulonephritis. I'm looking for anyone that has this disease.

[RhenDutchess123]

That is what I am also diagnosed with..I was told the only thing they know to treat it with is a Chemotherapy drug named Rutuxin..it is experimetal and very expensive and my insurance would not pay it (40,000 a dose needing maybe three the first year and one each year after)...I declined.....My kidney disease is very slow ..I have had it 18 years, and stayed at Stage 3 until this last year...now at Stage 4....It is inflamation to the fiters in your kidneys and they gradually die off and your kidneys eventually quit working...I just follow a kidney diet, keep my blood pressure under control and keep moving.....

[Lianelady in reply to RhenDutchess123]

Wow! I have never found anyone who had my disease. Thanks for replying. I was diagnosed 3 years ago. I did do 4 rounds rituxan. My protein levels and creatine are still very high. After rituxan I went to year of remicade. Now taking humira. Do u have fevers fatigue and severe joint pain and inflammation. My last biopsy in November shows no progression since rituxan.

[RhenDutchess123 in reply to Lianelady]

i had bone pain....my parathyroid levels went up to 320...i went to norman parathyroid clinic in florida...had three of the four removed and the forth one was perfect....no more bone pain.going on 3 years..i do get tired..because i am anemic...i take liquid b12 ...but i actually get alonf pretty good....my electrolytes are all normal range....but my creatin just recently went to 2.5 and my gfrs down to 16....how are your parathyroid and calcium levels ?

[Lianelady in reply to RhenDutchess123]

Where was your bone pain? I have severe hip pain everyday and have for over 3 years. What bone did u have removed? My thyroid levels and calcium are ok. My white cells have been high for 3 years as well. My protein and creatinine have been extremely high for 3 years. I also am anemic. My Dr said fibrillary is when you don't have a certain DNA gene that sends proteins to the correct places in your body. All the proteins land in kidneys all over the place and overtime cover scar and eventually destroy filtering units in kidneys causing failure. And the body produces an immune reaction trying to fix what's happening in the kidneys causing inflammation and joint pain fever and fatigue. What part of Florida do u live? I'm in Jacksonville.

[RhenDutchess123 in reply to Lianelady]

Hello...my bone pain was in my hips and legs..sharp unexpected pain...My Parathyroids (different than Thyroid) ran about 320....My Calcium was low in the 8...Parathyroids are 4 little glands that sit behind your thyroid...there only function is to regulate Calcium....when they become engourged with tumors (not cancerous) they go crazy looking for Calcium and they begin to pull it out of your bones...the rest of your organs know that your Calcium is fine and send it back into the blood stream and to the Kidney..which overloads the kidney...3 of mine were the size of peanuts...they should be the size of rice...they removed those and left me with one that is perfect...and one is plenty...These Doctors at Norman Parathroid are fabulous...it was a 20 minute operation (under anesthisia) with a band-aid dressing ...I have to really look to see a scar...they are also plastic surgeons...lol...Normal Parathyroid disease presents itself with elevated PTH and High Calcium...my Calcium was low...but after looking through my Medical History and Labs, they asked me to come to Florida...(I live in Wyoming)....they did some more testing and found the tumors...then removed them...The Dotors told me my parathyroids had actually done my kidney damage....(although my Nephologist still scoffs at it)...I went to them at 31 GFR...My bone pain was immediatley gone and they put me on 1200 Calcium and Magnesium....My PTH dropped from 320 to 55...My GFR stayed at 31 for 3 years until recently I have lost some more...Before the Surgery I was losing 3 to 4 GFR a month....The Parathyroid Surgery stopped the direct damage to my kidneys..but they are still damaged to where they struggle...I just wish I would have known about this disease while I was still in the 50-60 GFR Range....but as you probably know Nephologists just say "Parathyroidism is just part of Kidney Disease".Go to the the Norman Parathyroid website and read about it...and be sure to read the section about Parathyroidism and Kidney Disease....it is under the part about Secondary vs Primary Parathyroid Disease..what are your GFR numbers and what are your Calcium numbers ?...and what is your Creatine Level ?....and yes I am also Dx with auto immune...I avoid Gluten as much as possible and that seems to help...You may also have to request that your Doctor run a PTH (Prathyroid Hormone) test on you...most don't, because they don't see the coilation between Parathyroid Disease and Kidney Failure...

[Lianelady in reply to RhenDutchess123]

My calcium is normal. My thyroid same. I have taken synthroid for years due to hashimotos. My creatine is 1.9 and protein in urine is about 900. My gfr fluctuates . Sometimes in the 50's and 60's but usually about 70. I think and hope I caught disease early and did the rituxan. But who knows what will happen. I bleed from kidneys most days and pain and fatigue get the best of me some days. I take humira now to try and keep immune stuff calmer. How slowly did your disease grow over the 18 years?

[RhenDutchess123 in reply to Lianelady]

I was dx 18 years ago with CKD....I do not know what my Labs were because back then they never showed them to me....The Nephologist ust monitored me with Lab Tests and 24 hour Urine (I was 42 at the time)....He released me after 5 years and later died....I went 4 years ago to a new Nephologist because my OB/GYN found high levels of Protien in my urine sample and I had horrible bone pain....My new Nephologist always gives me a copy of my Labs and my GFR's were at 48...I dropped down to 31 GFR in about 6 months...I noticed where he had ordered a PTH in my blood work...mine were anywhere from 280 to 320...they should be between 16 - 60....I asked about it and he told me that Parathyroidism (that causes bone pain) was just a normal symptom of declining Kidney Function and would just be something I had to live with....I researched it more and I am glad I did.....what do they say causes your bone pain ?....Inflamation ?

[Lianelady in reply to RhenDutchess123]

I'm assuming it's inflammation. But not really sure. I started having horrible hip pain 3 years ago. Shortly after started having really high blood pressure and lots of blood in urine . Went to mayo clinic and went thru 100 tests and then kidney biopsy which showed Fibrillary. No Drs have ever heard of it and no nothing about it . My 2nd biopsy showed kidneys worse and then I tried rituxan. (Worst side effects ever) lost my hair and felt awful. But 3rd biopsy after rituxan showed no progression. Drs really guess on what to do. It's frustrating. What treatment have u had along the way? Do your Drs know anything about fibrillary? Have you ever met any other person with it? Are you trying to find a kidney donor? Or do you dialysis?

[RhenDutchess123 in reply to Lianelady]

i have not taken any Rutuxin treatments...mainly because my insurance would mot pay...and also because the parathyroid doctors told me not to take it....i have controlled blood pressure with medicine....i am not on dialysis yet...but i am on the kidney transplant list...when my nephologist did my kidney biopsy he said i had the fribrillary...that it was rare and did not know what to do about it...except follow kidney diet...and dialysis or transplant...i dont know anyone else...except you now....ir is frustrating...i have also heard that the term fribrillary glomerulitis is just a lable when they dont know what caused it.....thats why i tried the parathyroid route...because i fit all those symptoms...and it helped me with the bone pain...and i believe that the parathyroid tumors caused my kidney damage

[Lianelady in reply to RhenDutchess123]

I go to my thyroid Dr next month I will ask him to test my parathyroid. How long have you been on the transplant list? I'm glad I found at least another person who has this. Alot of people just don't understand what it's like to have a disease with no cure or treatment. It's like u get the diagnosis and just wait for kidney failure. How do you keep your spirit's up ?

[RhenDutchess123 in reply to Lianelady]

i am on the kidney transplant list..because neph recommended it..i havent gone through the process yet..so i am kinda on the unactive list...not sure i want to go that route if my kidneys fail...i think i will do the home PH for dialysis treatment when and if the time comes...i get bummed out from time to time...but then i remember that alot of people die sudden deaths...i kinda think think i am lucky to appreciate my good days instead of just wasting them...i am 61...been married for 40 years...have awesome daughters and son in laws...and 2 very cute grandsons i adore....so as far as life i have had a good one...some people never get out of the womb...i am not going to complain about only getti g 60 or 70 years...lol...does that make sense ?

[Lianelady in reply to RhenDutchess123]

Yeah makes alot of sense. Are you able to work and do alot of activities like normal? I had to stop working about a year ago. Just couldn't do it anymore. I used to be alot more active like running and rollerblading but have had to give that up do to pain.

[RhenDutchess123 in reply to Lianelady]

i worked full time until this year when my husband and i retired...but i work as needed as a playground teacher for the school district...we do alot of camping at the lake and i have a pedal boat i pedal around on the lake...i have slowed down alot tho...because i get tired...the B12 helps alot with that...and i just take a nap when i get too tired...my housework is not done up as much as i use...but thats okay...how old are you ?

[Lianelady in reply to RhenDutchess123]

I'm 49. I also need naps and my house is definitely not how I like it. How has your husband handled all this for 18 years?

[RhenDutchess123 in reply to Lianelady]

until the last year or so ...it really didnt effect me....we actually didnt believe that my kidneys were bad...until my gfr dropped so much...but my parathyroid surgery gave me back alot of zip...the thing about kidney disease is that it is so gradual you dont ealize that things are different until you drop down to toxic levels...but kidney function drops in everyone as they age too...one good thing about our type is it is gradual...they told me it was a 20 year disease...and they were right..even with my gfr at 16...i really dont feel bad...or retain fluids...or have my electrolytes explode...which stumps my neph...