Kidney involvement

[Soph76]

Hi Guys..
I was diagnosed with Sjs in 2009 suffering the usual fatigue, dry eyes & mouth, but all in all in good health.
Sadly in January This year I was hospitalised with severe parotitis, this then triggered a flare up which lasted for 5 months. During this time my kidney creatinine levels started to creep up. 
4 weeks ago I became very unwell and my creatinine levels had doubled, after a kidney biopsy I have been diagnosed with Chronic kidney disease - medical name chronic tubulo institial nephritis.  This is auto immune related (now my kidneys are under attack) I have been put on 40mg of steroids per day but my Renal Dr is looking to put me on a toxic drug with horrible side effects called Mycophenate or Azathioprine.
I was just wondering if any of you out there have had any kidney problems or any advice..
Still trying to get my head around the diagnosis
Any help would be appreciated
Thanks

[deniselb]

My creatinine levels have been elevated for 12 years, but they go up and down. In 2008 my GFR was 49. The neurologist recently told me that this was pretty bad, but the doctor I had at time never even mentioned it to me and I had no idea it was that low.

As of last week, it was up to 59, or almost normal. Both my primary and rheumy have always been unconcerned about my kidneys and never even tried to identify an underlying cause, but neither seems to think it's due to Sjogren's. The neurologist thinks it is Sjogren's and wants to put me on methotrexate, azathioprine or Cellcept. He and the rheumy are supposed to discuss it and get back to me. I don't think I'm nearly sick enough to take anything that drastic, and the rheumy agrees. The neurologist thinks I will go downhill if I don't. I was referred to him for dysautonomia. He thinks the kidneys are being damaged by unstable blood pressure.

Meanwhile, I am confused, to say the least. Trying to decide whether I should consult a nephrologist - will having more doctors make me less confused, or more so?

I have an appointment to meet a concierge primary doctor on Monday. I think I want more time and attention even if I have to pay a lot for it.

[Jasper]

I have not had Sjogren's related kidney problems. However, I have used some of the potent drugs and just wish to address your fears concerning them.

I was having several flares a year and was on steroid tapers for them. To try to treat the flares and avoid the frequent prednisone use, my doctor first tried Azathioprine. Unfortunately, the Azathioprine made my liver enzymes skyrocket so it was stopped after a month.  Next she tried Cellcept (Mycophenalate) but it made me very sick (severe fatigue, severe diarrhea, insomnia, nightmares, zero energy, brain flog, just felt horrible). So, after 2.5 months, I stopped Cellcept.

Next she tried Rituximab infusions and I am doing exceptionally well on Rituximab infusions. I get them every 24 weeks (2 doses, 2 weeks apart, every 24 weeks) and they have been a miracle drug for me. I feel very well , am no longer fatigued. I have improvement in my peripheral neuropathy and cognitive function, have less joint pain, have increased saliva, and  have had no flares since starting Rituximab. I have much more energy and feel globally improved. I have had no side effects whatsoever from Rituximab.

Rituximab is recommended for renal complications of Sjogren's Disease, so I would think it would be an option that your Rheumatologist would consider.

As far as Azathioprine and Mycophenalate, some people do very well on those drugs. I just happened to have problems with them. But there are some on the forum who take them and do well.

The really severe side effects that you read about in the drug information packets are possible, but are very rare. Yes, they are scary, but they are very rare. I am willing to take my chances because I cannot tolerate living the way I was living prior to Rituximab.

In addition, your renal problems really do need to be treated or they will get worse.

I certainly am not trying to tell you what to do, but if it was me, I would take my chances with the drugs over my chances with untreated renal disease.

I hope you can find a treatment that works for you.

Link to new Sjogren's Disease treatment guidelines:

http://www.sjogrens.org/files/research/RheumatologyCPG.pdf

[Soph76]

Deniselb

If your gfr is measured the same as mine yours is higher than mine?
My creative was at 180 at its highest normal range 45-89 umol/L, I'd get a second opinion as my levels have been taken seriously & if I don't get on top of it then in time my kidneys will fail.

Thanks for the advice Jasper I'm going to ask my Renal Dr about rituximab to see if this is another option.

[Madison Granny]

I too have chronic kidney disease.  But we do not know if it was caused by Sjogren's or by too many Advil or Aleve for pain.  My GFR was 46 but is now back up to 75 as of 11 months ago.  I think that it may be down again because of symptoms I am having.  So we will see at the end of November what is going on.  I didn't think that Sjogren's attacked kidneys but my Rheumy told me that it can and does.

[Jasper]

Soph76 .....

Here is a link to a good article on renal disease in Sjogren's patients. It is from 2009 but is relevant and some treatment options are discussed.

http://cjasn.asnjournals.org/content/4/9/1423.full

[irish]

I have levels that are usually normal but my gfr is getting lower. My doctor put me on Losarten 25 mgm a day to help save my kidneys the way she said it.

This is a blood pressure med that  is given as it helps protect the kidneys. I still take my metoprolol for my high blood pressure and my pressure is a little lower now so that is good.

The interesting thing is my health insurance company called my pharmacist and told him they had reviewed by meds and felt I should be on Losarten or something similar. It turned out my doctor and I had been talking about this drug earlier and so I went on it and that was that. I have type 2 diabetic so I am sure that triggered the also. I could not believe how long my pharmacist spent on the phone with me. It was about an hour--went through every med I was on.

He called me back again the next week to go over a few things and started repeating some of the stuff we had discussed the week before. I told him we had all ready gone over that. I thought about that later and I think he was checking to see if I was still "brainy" enough to deal with my medications cause I sure have a lot of them. I am 73 years old now so I imagine he labels me a relic. Haven't heard from him since. Irish