Long lost SS member !!: Hi, I haven't... - The Australian Sj...

The Australian Sjögren's Syndrome Association

2,431 members779 posts

Long lost SS member !!

Bettyboop71345 profile image
9 Replies

Hi,

I haven't posted in quite a few months. Recently found out I have stage 3 kidney disease. 😖...

Oh , just have to be really careful from now on. No nsaids, only Tylenol... lots of water. My paresthesia is fine with Plaquenil and high dose of Gabapentin daily. Also diagnosed with Tardish Dyskinesia from so many years of psych meds. Taking Austedo for it. Waiting for the movement to stop. That's about it for now. Hope all have very Happy Holidays 💕

Written by
Bettyboop71345 profile image
Bettyboop71345
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Basa20 profile image
Basa20

Hello BettyBoop71345,

I’m sorry to hear you have stage 3 kidney disease. I can’t imagine what you may be going through. 😞I was diagnosed with Sjögren’s syndrome October 2018 and currently taking 400mg a day for it. Then diagnosed with Fibromyalgia February 2019 and currently taking Gabapentin 300 mg a day. If I may ask you... did you get this kidney disease because of the Sjogrens? How long have you had Sjogrens and started having kidney problems?

Bettyboop71345 profile image
Bettyboop71345 in reply to Basa20

I assume it is caused by SS, but no one has said so.I‘be had it for years undiagnosed until 2018...Started losing teeth about 10 years ago. I was only diagnosed with kidney recently. I wish you well. Take good care💕

B

Hello Bettyboop71345, i'm new here but at the same time sorry to hear what your going through as Sjogren's can have a large impact on the organs in time.

I've had my kidneys flare up and been admitted to hospital besides urinating blood.

Happy Holidays to you also and wishing you the very best 🥰

Bettyboop71345 profile image
Bettyboop71345 in reply to

Hate to hear of your problems with kidney disease. Hope we've caught it in time🤞🏻

Do stay in touch. Wonderful holidays🌲🎅🏻

B

in reply to Bettyboop71345

Bettyboop i will ask a question if you don't mind..my kidney reading always say 60 when it should be 90, as it shows the proper results on the other side of the form to make sure your ok and underneath it always says in brackets..refer to CKD.

I mentioned it several times to the rheumo's and they've said everything is ok but when i spoke with the lady who takes my blood, she said they should be looking in to it?

I've looked it up and apparently it's stage 2.

Stage 2 Mild CKD (GFR = 60-89 mL/min)

honeybug profile image
honeybug

😊🙏🤗💗😘😇🕊🎄🎁🦌🎅❄️☃️💧

SusieW2 profile image
SusieW2

No words except, Sorry to hear this. Good wishes for treatment. Allow your friends & family to help; lean on them.

weathervane profile image
weathervane

Best wishes Bettyboop , i hope you are able to enjoy Christmas and that things improve for you in 2020 🎅🎄⛄️

Tally profile image
Tally

My heart goes out to you. Kidney Disease is not good. Please take care xxx

You may also like...

ear pressure from SS?

does anyone else have ear aches and pressure on your ears from SS? My ears have been hurting on and...

ear swelling with SS?

behind the ear? My left ear has been blocked from draining and now the outside of my ear is...

Red dry skin patches with SS.

inflammation but doesn't know what and gave me low dose steroid cream to put on which helps but it...

SS Autonomic dysfunction & specialists NSW

autonomic dysfunction associated with Sjogren’s disease. I have had SS for over 20 years and...

Have had Sjogren's for nearly 10 years (am 65y.o.) I recently had a hip replacement, for which I lost some weight, and improved my fitness.

From 61kg, now down to 51.5kg, I am looking a little scrawny at 164cm height. I find I am continuing