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Corella
01-16-2014, 06:35 PM
I had a phone call the other day in the evening, from my GP telling me that my kidney function has reduced (significantly for my age) so I have to have more tests done. I am at the hospital next week so shall have them done there by my Rheumy.

I asked if I should stop the Cellcept and my GP said no, to NOT stop them. In hindsight I knew something was wrong, I have felt crook all over christmas, feeling exhausted - so tired I could barely lift my arms, feeling sick and dizzy every morning and urinating more frequently.

I am just wondering if it could be the Cellcept or what could be causing this? (I have UCTD). How can my kidneys just start to decrease in their function like that? I am hoping its the meds and if it is, can it be reversed by stopping them?

All I know is that I feel pretty crap, have lost weight, feel tired/sick and if its not the meds, then its a huge concern as I cant go over 5mgs in steroids (badly react to them).

And I thought if it was lupus related kidney issues then you gain weight not lose it?

Sorry for all the questions.

Steve - I might give you a call today if that is OK?

steve.b
01-16-2014, 07:38 PM
offering hugs ...... and an open ear.

Saysusie
01-17-2014, 10:54 AM
Hi Corella;
I cannot tell you why your kidney function has lowered and in answer to your questions; it could be all of the above or none of the above. I am sorry that I cannot be more specific.
However, auto-immune diseases can often damage the kidneys and some medications can damage the kidneys. It is difficult to know why this has happened or if it is a result of your disease or your meds. The damage can be minimized with other medications, and if the damage is not severe, it can be reversed.
I wish you the very best and I hope that you get some answers.

Peace and Blessings
Namaste
Saysusie

Corella
01-21-2014, 11:46 PM
Saw the specialist and he does not believe it is medication related. He confirmed that the results are not normal but has said not to be concerned, he has run more tests and urine today and will call me in a week if any issues, he said it could be a number of things even severe dehydration but it does need looking in to.

He has also started me back on the MTX but not the injection as just cant go back to doing that.

Anyway, the new bloods should hopefully come back OK.

Saysusie
01-22-2014, 02:34 PM
I truly hope so :-)

Wishing you the very best.

Peace and Blessings
Namaste
Saysusie

Corella
01-22-2014, 09:09 PM
Oh dear, MTX has been delayed as for the past couple of weeks my nausea has been awful, feeling dizzy and headachey as well and it isnt gastro.

Specialist said hold off MTX for the moment and carry on with preds, Cellcept and plaquenil - my bloods are due back soon, so we shall see what my kidneys are doing but the nausea could be related to the results - we dont know yet.

But I feel very sick and it's not nice, food is just bleugghhhhh! at the moment and I have had this on/off for a few weeks.

:(
:(

Saysusie
01-23-2014, 09:25 AM
YUCKY! I am so sorry that you are nauseous. Since one of the primary effects of MTX is nausea, I can understand why your doctor has chosen to hold off on it for now. I do hope that you get to feeling better soon. *cyber hugs*

Peace and Blessings
Namaste
Saysusie

Corella
01-24-2014, 01:11 AM
My consultant telephoned me today to see how things were and said not to start the MTX and he will call me with the blood results and take it from there. I am peeing such a lot and feel nauseous mostly in the morning and have little appetite through the day.

Oh well, it explains the tiredness and confused state i was in over xmas and not to mention the severe itching I get on/off - like deep within my skin, not a surface scratch and not an itch that is satisfied by scratching if that makes any sense.

No doubt all shall be revealed next week but the doc reckons it is not related to the drugs.

steve.b
01-24-2014, 09:14 AM
( ( ( h u g s ) ) )

tgal
01-24-2014, 12:21 PM
So very sorry! Please keep us updated. I will be thinking about you!

Corella
01-24-2014, 04:29 PM
Thanks guys. I think it is funny how it has all turned out. Do you remember when I first joined in 2011 and I had mild symptoms to what I have now and the first specialist didnt believe me, the second one half heartedly did but stuck with me, then the symptoms grew in severity and as new things cropped up, I photographed them and now have a diagnosis of UCTD (pushing towards Lupus) - confirmed by doctor through photos and eye specialist from eye tests.

It seems to be getting more aggressive and now I have bad lung involvement and my kidneys are starting to play up. It goes to show that you MUST stick with pushing for an expert opinion and never give up.

One thing I dont understand, is how by the first lot of bloods, the consultant is able to say he doesnt think its drug related? He also said 'whatever happens, keep taking the cellcept and the preds' He knows I cant go above 5mgs of preds but says I have to stay on that at the least.

I just have to wait until Wed now to get my results, I know there is something wrong with the kidneys though, I feel all 'wrong' and out of sorts and in the morning I feel sick and dizzy and my hands feel funny.

Anyone else get symptoms with their kidneys and if so, what do you get?

:)

Corella
01-24-2014, 11:33 PM
Thanks Steve for the chat earlier, you have no idea how much it meant.

Looking forward to catching up at the end of the month xx

tgal
01-25-2014, 12:04 PM
You are absolutely right. We MUST be our best advocate because too often even the doctors are not willing or able to see what we know is happening.

Corella
01-25-2014, 05:53 PM
You are absolutely right. We MUST be our best advocate because too often even the doctors are not willing or able to see what we know is happening.

Its a strange feeling when you feel 'wrong'. Some days I dont have any or little nausea - this morning whilst I dont feel sick, I have zero appetite either and I am a bit itchy.

I can tell when its bad because on other days my joints are so stiff and the itching is terrible and I cannot even look at food. I just knew the disease had taken another turn but didnt know what it was and never dreamt it could be kidneys.

I keep hoping that when the specialist rings me on Wed, he will say it is all back to normal and my results were initially out as I was dehydrated or something.

Oh Steve, I looked into that grant for heating/cooling and we dont qualify as both my husband and myself are working. So I shall try and raise some money by doing some journalism - havent done it in ages but if I can do some writing outside of my normal job, I should be able to get my air con fund underway.

kimmielou
01-27-2014, 01:17 AM
When I had kidney problems, I lost weight, couldn't keep anything down, was tired, had trouble breathing....but for me it turned to kidney failure. Not trying to scare you...that's just what happened to me. That was in 2011...now it's 2014 and I'm ok kidney wise but I still worry if anything close to what I experienced begins to happen again.

Corella
01-27-2014, 02:31 AM
When I had kidney problems, I lost weight, couldn't keep anything down, was tired, had trouble breathing....but for me it turned to kidney failure. Not trying to scare you...that's just what happened to me. That was in 2011...now it's 2014 and I'm ok kidney wise but I still worry if anything close to what I experienced begins to happen again.

I have had breathlessness, which I put down to the Sjogrens but my weight loss has been quite noticeable and the nausea makes it very hard for me to eat.

I wonder how someone can just develop kidney issues so quickly? My doctor said it is common with auto immune diseases including Lupus. Some days I feel so weak I can barely walk and have to force myself to do anything and my concentration is badly impaired at times as well.

I hope it isnt kidney failure for the fact I cannot go any higher on the steroids due to sever reactions with them - to the point I wear a medic alert bracelet, I can tolerate no more than about 7mgs and I am on 5mgs now. Doctor said I MUST stay on the steroids for the moment, assuming its to protect the kidneys.

Its just the not knowing that gets me :(

I should find out on Wednesday what is going on (hopefully)

kimmielou
01-27-2014, 06:52 AM
I have had breathlessness, which I put down to the Sjogrens but my weight loss has been quite noticeable and the nausea makes it very hard for me to eat.

I wonder how someone can just develop kidney issues so quickly? My doctor said it is common with auto immune diseases including Lupus. Some days I feel so weak I can barely walk and have to force myself to do anything and my concentration is badly impaired at times as well.

I hope it isnt kidney failure for the fact I cannot go any higher on the steroids due to sever reactions with them - to the point I wear a medic alert bracelet, I can tolerate no more than about 7mgs and I am on 5mgs now. Doctor said I MUST stay on the steroids for the moment, assuming its to protect the kidneys.

Its just the not knowing that gets me :(

I should find out on Wednesday what is going on (hopefully)



My kidney function spiraled downhill in a two month span...definitely make sure you get some lab work done to check your creatinine levels and renal function now. I waited too late...I was having blood in my urine by the time I went to the hospital. If I would have waited any longer I would have lost my life. Please make sure you checked thoroughly ASAP .

kimmielou
01-27-2014, 07:04 AM
I had the same issue with concentration....at times I just couldn't think at all. I was in school at the time and usually my thoughts flow, but I felt like my brain was shutting down. It was crazy. By the grace of god I was pulled through and I think about it every day. I've been through dialysis, and it was scary for me. I never wanna have to need it again...I keep praying.

Corella
01-28-2014, 04:28 AM
My kidney function spiraled downhill in a two month span...definitely make sure you get some lab work done to check your creatinine levels and renal function now. I waited too late...I was having blood in my urine by the time I went to the hospital. If I would have waited any longer I would have lost my life. Please make sure you checked thoroughly ASAP .

Yep, I think they did all the kidney tests on Wednesday plus I had to fill two urine pots - I get all results tomorrow - I am wondering if dehydration stuffed up my results, or am I just wishful thinking? :(

The symptoms I have had are in hindsight, speaking volumes. Oh well - we shall see.

Corella
01-28-2014, 07:39 PM
Well no call from the doctor as yet - it is 10.40am, I am assuming all must be back to normal and think if it was that urgent, I would have been called by now surely?

Feeling confident it was just a bad one off blood result. :)

chikititalinda
01-28-2014, 10:00 PM
oh Corella I really hope is nothing. I can only imagine how scared you must be. Did you hear back from the dr. Today? Please keep us posted. {{{HUGS}}}
Mari

Corella
01-29-2014, 12:08 AM
Consultant called me and said everything has gone back to normal ranges - he doesnt know why it went up, said it is not the Cellcept. He thought maybe dehydration as our temps have been in the 40's here.

I start back on MTX tablets next week.

Feeling very relieved indeed.

Saysusie
01-31-2014, 10:40 AM
We are also relieved to hear this. Keep well and I hope that going back on the MTX helps you.

Peace and Blessings
Namaste
Saysusie