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Sjogrens Topics => Living With Sjogren's => Topic started by: yanzhang on July 08, 2014, 02:39:34 PM

Title: Sjogren with Interstitial Lung Disease
Post by: yanzhang on July 08, 2014, 02:39:34 PM
Hi, everyone
I am new for this forum.
 I was diagnostic Sjogren Syndrome when I was 26 years old living in China, I am now  44, except dry eye and dry mouth (I had almost every teeth root  canaled, I am following up every 6 months with doctor (not have any treatment, just eye drops.) I consider my  life is happy until 2012, I start to have protein 2+ in my urine, and  I was diagnostic Interstitial Lung disease on May 16th 14, while I  was sent to hospital for 6 days having fever, shortness of breath...Doctor said Sjogren start to attack my kidney and Lungs, He want me to take cellcept which shutdown my immune system, my own immune is attacking myself.

My doctor gave me treatment with 30MG Prednisone and 2000 mg  Cellcept. ( He wants me to take 3000MG, but I can't since it cause me  lot of side effects). I am only 100lb, I don't know whether 3G per day is too high doses for me.
I have been taking 30mg Prednisone for almost 8weeks.. , The  protein in Urine is still 2+, before taking cellcept, I am only taking Prednisone 20MG , the protein in urine was negative. I have very much concerns about the high dosages of Cellcept.

 I am wondering anyone having same problem? Anyone is taking Cellcept 2-3g per day and Prednisone for Sjogrens?

Currently I can't even have a walk, since the shortness breath make my Oxygen level very low when I walk , lower then 90.
I have lung function test tomorrow.
In addition, My ANA test result was 1:2320, (18 years ago was 1:1300) Doctor told me 1:2320 mean nothing , just showing positive, anyone had that high ANA?

Title: Re: Sjogren with Interstitial Lung Disease
Post by: Carolina on July 08, 2014, 03:55:24 PM
Welcome to our forum, Yan.  Ni Hao!

ILD (Interstitial Lung Disease) is a serious complication of Sjogren's Syndrome, as you know.

You must treat it aggressively, because our lungs are fragile and already you are having trouble breathing.

I don't know about protein in your urine, Yan.  It could be unrelated.

Here is a list of possible causes of protein in urine from The Mayo Clinic.

Please keep us posted on how you are doing.

I'm so sorry to hear of this complication of your Sjogren's.

Hugs,  Elaine
Title: Re: Sjogren with Interstitial Lung Disease
Post by: quiger on July 08, 2014, 07:48:20 PM
Hi Yan,

Welcome to the forum boards.

I am sorry your symptoms have progressed so much in the past two years. I hope the medications will help you and that your doctors will be able to stabilize your condition. Good luck with your lung function test tomorrow. Hopefully the test results will aid your doctors to insure that you receive the proper treatment plan.

Best wishes to you,

Title: Re: Sjogren with Interstitial Lung Disease
Post by: CMNK12 on July 09, 2014, 06:01:49 AM
Hi Yan,
  I have not been diagnosed yet with ILD... but with lung inflammation. I took cellcept. I am now on rituxan and prednisone and imuran and mtx , hoping to decrease my inflammation.

  I too have "urine" issues. Hematuria is mine....blood. Now, starting some trace protein.

  From what I understand, cellcept and prednisone are the drugs of choice. Check out National Jewish Health. They have an autoimmune lung program. You can even email them.

   Have your doctors thought maybe lupus? Just a thought. Take care Yan. My prayers are with you. CK
Title: Re: Sjogren with Interstitial Lung Disease
Post by: Carolina on July 09, 2014, 07:40:54 AM
I want to point out that Interstitial Cystitis (IC), which occurs in up to 50% of those with Sjogren's Syndrome, can lead to frequent Urinary Tract Infections (UTIs) and protein in the urine.

In addition, many autoimmune conditions share traits with each other, and Lupus is a condition that attacks the kidneys very often, leading to proteinurea.

Hugs,  Elaine
Title: Re: Sjogren with Interstitial Lung Disease
Post by: DryGuy on July 09, 2014, 09:02:58 AM
Like everyone else said, you need to go after the lung issues hard to stop them. Because if it turns to pulmonary fibrosis there is currently no way to reverse that. But in the early stages of autoimmune attack it can be stopped this preventing fibrosis. Regarding the kidneys, I'm assuming they've started you on a low protein diet to ease the load on the kidneys and also you need to look at your GFR, glomerular filtration rate the GFR is used to determine what stage of kidney disease you are in
Title: Re: Sjogren with Interstitial Lung Disease
Post by: yanzhang on July 09, 2014, 07:26:32 PM
Dear all,
Thanks for the response, I am so blessing to find out this forum which people are sharing same things.
I think my lung will be at good hand, the Pulmy is very nice and knowledgeable at Duke university, eventhough He still can't answer lot of my questions, but after CT scan which I did again today, he will give order for next procedure.

I did lung function  test, the diffusing Capacity is low only 36, normal above 70. but the walk test didn't qualify for Oxygen (above 90), that is good thing, so that means I don't need Oxygen.
Since I still have blood in phlegm, after CT scan , he may want me to do another bronchoscopy or a surgical biopsy depending on what he see.
Actually the blood started after my first bronchoscopy, I did that when I was in hospital, I am wondering anything may be related to the procedure. >:(
Last year , I already did kidney biopsy, my kidney function is good, and I am under monitor kidney related blood test every three months. My Rheumy tested Lupus, result is negative, so I am not developing Lupus :D
He reduce Prednisone 5MG from tomorrow and add 500MG cellcept per day.
I will keep you posted for any additional treatment or helpful information.

Thanks again!