Symptoms...

[isi14]

Hello,i wish to confront with you my simptoms.Was a routine control for me.i had a cough at first and i make a scaner in wich the doctor sow noduls in lung.i made the biopsy all the controls and the results was that i have wegner.than the doctors decided my therapy which was 50 mg pred at first,omeoprazolo,and every 15 days cyclofosfamide later every 21 days for 6 months.in the end of therapy i made a scaner and the result was pleasant.the doctor told me that 95% of noduls where desapear.now i have 5mg pred,mofetil,ramipril,losartan.i have a renal problem(proteinuria) and cholesterol too for which i take vittoryl.


Inviato dal mio iPhone utilizzando Tapatalk

[drz]

Hello,i wish to confront with you my simptoms.Was a routine control for me.i had a cough at first and i make a scaner in wich the doctor sow noduls in lung.i made the biopsy all the controls and the results was that i have wegner.than the doctors decided my therapy which was 50 mg pred at first,omeoprazolo,and every 15 days cyclofosfamide later every 21 days for 6 months.in the end of therapy i made a scaner and the result was pleasant.the doctor told me that 95% of noduls where desapear.now i have 5mg pred,mofetil,ramipril,losartan.i have a renal problem(proteinuria) and cholesterol too for which i take vittoryl.


Inviato dal mio iPhone utilizzando Tapatalk

Sounds like good treatment results if most of nodules disappeared from your treatment. The meds sound pretty typical too for GPA maintenance therapy.

[Debbie C]

Sounds like things are getting better for you. Do you have a kidney dr , who also knows about wegeners care that you see. You will find over the course of time that you will need several drs. to watch for different things. Glad to hear the nodules are going away. I also have involvement in my lungs, they say that I am in remission right now.

[isi14]

I thiks so Debra,but im so scared...As regards the kidney my doc often comunicate with a kidney dr which is aware for my condition,.I have the problem of cholesterol too[emoji57].At the beggining of march i have a control let's see what will happen.Thank you debra for your repplaying[emoji5]️


Inviato dal mio iPhone utilizzando Tapatalk

[Debbie C]

isi,we are all scared at first,especially when you read what is on the internet. Don't believe all that. Things have come a long way. As you can see your lungs are improving. You just need to make sure your kidney dr is knowledgable with wg and takes urine and blood test also.As far as your cholesterol,that is the least of your problems. Mine has been high for years but my heart dr.did a in depth scan of my heart and everything is fine,so try not to worry. You will be fine with the right meds and dr. And it sounds like you have them. Relax and remember we are always here.

[isi14]

Debra thank you for the support.yes,i make test urine and blood every months.the doctors looks very committed but anyway im scared and sceptic too.i dont know debra,im feeling in air.lets see!!Wish you the best[emoji5]️[emoji5]️


Inviato dal mio iPhone utilizzando Tapatalk

[greenjeep]

I hope you went from 50mg to 5mg very slowly. A drop like this after 6 months. could damage kidneys


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[isi14]

This happened gradualy according with tests that i made any month.Became a year and half that im on therapy.At first i continue with 50 mg pred,later 25..... And gradually i am here with 5 mg pred.Maybe is difficult to understand me by the language,i dont know it fine[emoji57],sorry.


Inviato dal mio iPhone utilizzando Tapatalk

[LisaMac]

Your English is fine, we understand what you're trying to say .

I usually use my creatinine level as an indicator of my kidney function , do you know what yours is? The day I collapsed my creatinine was over 11. I was put on emergency dialysis. That was worst case scenario, so don't panic. After my initial 6 months on Cytoxan my creatinine started to drop until it was to my 'new normal'. I think I read somewhere that the high dose steroids, such as Prednisine can lead to proteinuria. And, most Americans have high cholesterol, so let that be something you worry about later. I eat a very heart healthy diet and mine is always high. Once you get into a more stable place you can deal with your cholesterol.

Lets focus on the GREAT news about your most recent scan! That's wonderful news!! I'm SO excited for you!

If you want to be more proactive, google 'RENAL DIET' and try to follow it till your next lab draw. I lived on it for a couple of years, it was far easier than dialysis. But, honestly, if the dr chose dialysis for you at any time, try not to panic. Just take this one little triumph at a time. I agree with the others, this is a slow process and you can't panic.

Keep us updated,

Lisa

[isi14]

Hi Lisa[emoji5]️.Of course that i know about creatinina.I measure it everytime when i make tests of urina.As i said at first i was diagnosticaded in Albania when i done the biopsy in lungs.After the intervention i had anemy,and the creatinina didnt was in level,when i came here in Italy.After the therapy as i said which was,the anemy and creatinina were in level. The creatinina at 27/01/2015 was 0,8 when the normal value are 0,5-1,3.The problem continue to be proteinuria.I make everymonths tests about it,the last months doc were satisfied by results.This month the result wasnt very good.And i have to remake the tests at the beggining of march.But i never heard about dialiseas from them[emoji15].i dont know what is it.


Inviato dal mio iPhone utilizzando Tapatalk

[LisaMac]

With that creatinine level you don't need to be concerned with dialysis, put it completely out of your mind. Ask your dr how you can bring down the proteinuria, it may be a simple diet change. I know when I was on a high protein diet I spilled protein into my urine, hopefully that's all it is. And like I said, I believe that could be from the Prednisone

[isi14]

Thank you Lisa.I am very worried abut the VES because was 70 when the normal level was 30,i dont know which is the term in england.this measure the infection[emoji57]


Inviato dal mio iPhone utilizzando Tapatalk

[LisaMac]

Sorry, I can't figure out what VES is. I'm in California btw and am very jealous that you have a such a wonderful sister in Italy!

I just did a very simple search and found that proteinuria can be caused by diabetes, (I struggled with high blood sugars on Pred) or high blood pressure.

If you are concerned about infection, which is a concern, you should ask your dr if it's a concern. You are your best advocate. Bring a notepad with questions and ask lots. Write down what he says so you can look over it later.

[LisaMac]

Ok, I found it. Your VES seems to be our SED rate, which is an inflammation marker.

[LisaMac]

2109



Try entering the information in the search bar on my screenshot. I think it may help you, unfortunately it's not in English, lol! It does talk about protein in the urine as an inflammation marker as well. I am certainly no expert but maybe your Prednisone needs to be increased. I'm not as good at reading this complicated information as many on this site so my advice is pushing your dr. for answers. Sometimes we have to be pushy to get answers.

[isi14]

Thank you Lisa,i appreciate so much you.i cant figure out what Ves is in english [emoji57].Anyway thank you for the information you give me every time.[emoji5]️[emoji5]️


Inviato dal mio iPhone utilizzando Tapatalk

[isi14]

Lisa you founded it,oh my god im so worried what's gone happened,what it means,what doc will say.[emoji17][emoji17][emoji17][emoji17]


Inviato dal mio iPhone utilizzando Tapatalk

[LisaMac]

VES is very similiar to our sed rate. An inflammation marker.

[mrtmeo]

Hi Isi,
My mom has bad proteinuria and she is on an angiotensin renin blocker to help, but it really didn't do much because hers is due to the inflammation from the vasculitis. She is not in remission, yet, but has Microscopic Polyangiitis which is P-ANCA positive with antibodies against MPO.
Her creatinine is 1.8 last month.
If you consistantly have high protein in your urinalysis tests, then there could be inflammation still going on.
If you eat a big steak every time u go for a urinalysis, the protein could be high and the kidneys do adjust to higher proteins when they are functioning ok.
Eating minimum protein to support your lean body mass can help lower it.
High blood pressure and high blood sugar can adversely effect your kidneys.
Are you working with a Nephrologist to determine what is going on with your kidneys?