sarcoidosis, prednisone, and kidney problems??

i have been on prednisone for about 6 months now, start weening off, then back up, i recently started having some minor kidney problems. anyone else have kidney problems also???

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From what all my doctors state and what I read you shouldn't be on Prednizone for longer than 6 months. I think you should get yourself checked out and possible try another med for now. Don't want to be messing around with the kidneys.
Good luck.

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I have been on steroids on and off for 6-7 years this last time I have been on for 11 months now. Please get checked! The side effect are extreme and it is very hard to get off of them. I have developed cushings syndrome from the steroid treatment I am on. There is nothing i can do to reverse the damage now.

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Hello everyone,

I am new to the message board; I have been on a combination prednisone, methotrexate for the last four years.

When you say kidney problems what do you mean? Urge to go and cannot? Incontinence? Constant urges to go?

I have to go just about every hour. I have had many UTI's because my bladder is not emptying all the way; the urologist and my neurologist tell me that I have a 'neurogenic bladder'. Meaning that it is neurological in nature - my sarc has affected my lungs, eyes and CNS.

So when you say kidney problems, what do you mean?

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i have been on the prednisone for a little over 6 months now, up till the time i was diagnosed with sarc about the only time i had anything wrong with me was a cold now and then, and all at once i have had sharp pains in my lower back around my kidney(left side), just went thru a case of kidney stones.
my doc told me that there was no connection between sarc and kidney problems, or prednisone and kidney problems.
i have decided he has no clue what he is saying so i am going to find another doctor.

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My mom was on prednisone for years for an auto-immune illness that I know feel was sarc. I have sarc and the last med I would go on would be prednisone after seeing what it did to my mom. She ended up with 30% kidney function for a few years. Right after having an unnecessary colonoscopy her kidneys failed (dehydration from the prep) which is what finally got her 2 years ago. I believe long term use of the prednisone ultimately did her in. There has to be alternative treatments for sarc then prednisone which can cause more problems than it helps. She struggled to get off of it and finally did the last 6 months but the damage was done. I miss her so.

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I was diagnosed with sarcoid in 1976 with no problems that I can remember until the late 1980s. I have been on prednisone in a varying dosage since 1992. In 2002 I had a kidney removed for renal cell cancer. The doctors say it had nothing to do with the prednisone. I am now on a low dose which varies betweem 5 and 7 mgs a day. My lone kidney is doing quite well at this time, but it seems that the levels are rising. I also have type 2 diabetes. I am being seen by a pulmonary Doctor at the VA hospital in Atlanta. If any one knows of a doctor or clinic in the Atlanta area that specialises in sarcoid please let me know.
donh526@yahoo.com

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I was diagnosed w/Sarc in May 07 and was hospitalized because my kidneys were failing. That was because of the sarc. The ER dr. decided I had cancer and did a chest xray and said I had lymphoma. I had lost a ton of weight and was tired a dry cough. I have been on prednisone now for almost a year. Whenever I wean off my calcium and creatine levels go way up. I have an aunt who had a kidney transplant and she takes a very low dose of prednisone and will for the rest of her life.

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I have been on pred. for about 4 years. Didn't get kidney problems from the pred, but from the sar. It got to the kidneys and spine. But some of the meds. caused diabeties. Pred is not a fun drug,but can't be blaimed for everything.
Larry

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I went to the ER in Jan. thinking I had walking pnumonia. Turned out that I had kidney failure. After a biopsy a dx of scarcoidosis. I was started on 100mg of prednisone and tapered off by the end of February and put on plaquenil. By the end of April I was back in the hospital and have been on prednisone since. I'm down to 20 mg/day, but the side effects of moon face, weight gain, thinning skin, and a few others have already happened. Be sure that no one tries to put you on methotrexate if you're having kidney problems. I went through that too. By the way, at 39 (10 years ago) I had to have a pacemaker. Now Dr.s are saying that I have scarc of the heart also, but I don't have it in my lungs.
Sabrina

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Yes. I think so. I was on 60 mg a day for 2 days, then 40 mg for 2 days, and now I have started having serious back pain that I have a hard time walking. I have not been thirsty, and I have not been urinating a lot either. But I have been getting the runs. I started to think it was my kidneys, but I saw nothing mentioned on the drug information sheet I got from the pharmacy about back pain or kidney problems. So I looked it up online to see if anyone else complained of the same thing. I am feeling kind of worried about it cause it really hurts.

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Hi
Keep checking those kidney stones. I was having low back pain for almost a year and finally ended up at the ER with a stone stuck and had to be removed surgically. Not fun. There is still a larger one in the other kidney but have not had it removed yet. Will do so this fall.
I do get pain and it is still in the kidney that was operated on.
I am on prednisone 7mgs right now trying to come down to my normal 4 or off.
Bunkie

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My last two doctor appts I was reminded to "watch my calcium"...I do not take prednisone.
Sarc causes us to make excessive forms of Vitamin D.
We are supposed to avoid all forms of dietary D and sunshine (according to my doctors). It is illegal to prescribe D to sarc patients in some countries.
Almost all dairy is fortified with vitamin D. It also contains calcium.
Your kidneys are the normal source for creating this activated form of D. The granulomas also produce it. The main use of this type of D (1,D,25) is to regulate the immune system and reduce absorption of mycobacterium tuberculin. (CHEST journal)
Our kidneys are fragile due to the sarc. If we consume or are exposed to D we make too much 1,D,25 which causes us to leach calcium from our bones which results in kidney stones and failure and osteoporosis, among other things.

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Hi to all of you:
I am 62 y/o veteran. my sarc. was diagnozed in 1974
when I started experiencing swelling ancles, physical fatigue, and pulmonary related symptoms. By that time was chronic according to my pneumologist. Symptoms dissapeared witout medication. I remained without medical attention until 1993 when I decided to visit a pneumologist again, after noticing short breathing specially when playing the trombone. Since that date I was prescribed steroids with good outcomes. I continue playing in a band. I still have syptons like HBP,eyes irritation and ocational fatigue. For those who served in the Army or the Navy it is important to let them know that there is a high pre-disposition to develop sarcoidosis. There are valid studies that confirm it. Hope you get well soon.

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Hi~
My husband, Mark, was first diagnosed w/Sarcoidosis in 1992 and was put on 120mg of Prednisone and tapered down over six months. Same thing again in the late 1990's when he had a Sarcoid flare-up. Flash forward to 2009 - Mark now has stage 3 chronic kidney failure from the super high blood pressure (and unknown kidney damage) the prednisone caused. He never had any BP problems before taking Prednisone, and has had high BP since 1992. Unfortunately, it wasn't until 2008 that his BP was finally gotten under "real" control. Unfortunately, the damage has been done and dialysis will be in his future. What is the extent of your kidney damage?
Karen

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I have had problems with my kidney's 2 years now. In and out of the hospital with huge kidney stones. My kidney doc said it was calcium oxilate.I think that is how you pronounce it. And it does probably have to do with the sarcoid producing excessive amounts of calcium. He also said I should never eat anything with over 200mg of sodium. And drink alot of water. I know it stinks but its a heck of alot better than the pain of kidney stones! I am now on a 12 day burst of prednisone and am drinking alot of water to flush my body out. We will see what the doc puts me on in 2 weeks hopefully not Methotrexate again. If you feel back pain then you should definatly see or contact your doctor. Good Luck.xoxoxo

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I have sarcoid related kidney stones and prednisone or other corticoids make it worse. For most people it helps but for some people it has the opposite effect because it makes osteoporosis worse.

I have calcification in my bladder wall and an organ where the sperm is produced (not the prostate or the testiculs). I've also got kidney and salivary gland calcifications. This is because i got to much calcium in my blood that's being disposited everywhere. My biggest problem are kidney calcium stones. For 2 years i had them almost daily and i couldnt leave the house.


Many sarcoid people have bladder problems and are told they have a bad bladder. But the problem is almost always due to too much calcium in the urine that irritates the bladder or forms calcium sand in the bladder; The calcium obstructs the bladder outlet and causes urinary retention. A scan will only detect the big classical kidney stones.

For the kidney/bladder stones and related bladder
irritation reduce your corticoids and if that doesnt help take potassium citrate to dissolve and reduce the stones.

You should check your vitamin D, and vitamin D1.25, have a 24h urinary calcium test, and calcium blood test and maybe also a paratyroid test.


Here is an explenation of the calcium mechanism in sarcoidosis:

Some sarcoid granuloma's produce a toxic hormone that increases calcium absortion by the blood. It does this by converting normal vitamin D to Vitamin D1.25. As a result test results will show a low vitamin D and lots of doctors will prescribe extra vatiamin D which can be really fatal for the kidneys of a sarcoid patient because the conversion from D to D 1.25 will even increase.
So if you test for calcium problems the little known obscure D1.25 will have to be tested also.

A result of this vitamin D 1.25 is an extreme calcium absorption by our blood from our bones and from the food we eat. If we eat something with 10 units calcium a normal person may absorb 2 units, according to the natural needs of the body but someone with elevated D 1.25 will absorb all 10 units whatever the body needs it or not. At the same time the absorption from the bone conitues causing osteoporosis

Anyway the direct treatment is (after a positive D1.25 test) ketoconazole and/or plaquenil. An other treatent is to handle the root of the problem i.e. treat your sarcoidosis with immuno supressants.

David

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My sarc was diagnosed in 05. I just started pred in late June 09. Before that, I had kidney problems in March. Wound up at a nephrologist (kidney doc) and the final bottom line is that yes, I have too much calcium in my urine.

He diagnosed me with kidney failure stage 1. (I wouldn't have known that though w/o ordering the documents from my pcm!)

He said that my kidney was not "diseased". It's not a matter of you having your filter not working. It's a matter of the filter becoming too small to do its job. This is either from scar tissue directly from the sarc or from calcium deposits indirectly from the sarc.

As long as you have enough kidney filter working, you're o.k. Just need to drink a LOT of water to flush out the excess calcium before it turns to stones.

Anyway, that's my 2c.

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My sarc was diagnosed in 05. I just started pred in late June 09. Before that, I had kidney problems in March. Wound up at a nephrologist (kidney doc) and the final bottom line is that yes, I have too much calcium in my urine.

He diagnosed me with kidney failure stage 1. (I wouldn't have known that though w/o ordering the documents from my pcm!)

He said that my kidney was not "diseased". It's not a matter of you having your filter not working. It's a matter of the filter becoming too small to do its job. This is either from scar tissue directly from the sarc or from calcium deposits indirectly from the sarc.

As long as you have enough kidney filter working, you're o.k. Just need to drink a LOT of water to flush out the excess calcium before it turns to stones.

Anyway, that's my 2c.

Report post

My sarc was diagnosed in 05. I just started pred in late June 09. Before that, I had kidney problems in March. Wound up at a nephrologist (kidney doc) and the final bottom line is that yes, I have too much calcium in my urine.

He diagnosed me with kidney failure stage 1. (I wouldn't have known that though w/o ordering the documents from my pcm!)

He said that my kidney was not "diseased". It's not a matter of you having your filter not working. It's a matter of the filter becoming too small to do its job. This is either from scar tissue directly from the sarc or from calcium deposits indirectly from the sarc.

As long as you have enough kidney filter working, you're o.k. Just need to drink a LOT of water to flush out the excess calcium before it turns to stones.

Anyway, that's my 2c.

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