CKD

[kyliesinead]

I was diagnosed with UCTD in 2013 which seems to be pretty mild as I've managed to tolerate it by retiring and resting as necessary. I'm on Omeprezol for reflux. In the last 18 months I've been diagnosed with barratts oesophogus and chronic kidney disease (eGfr 58). Neither consultant seems to think there is any connection between connective tissue disease and these conditions. What bothers me is that I've refused medication for my lupus-like symptoms of joint pain and fatigue, but what if this decision has meant that my kidneys have been affected? Any comments would be appreciated, thanks xx

[KayHimm]

I can certainly understand your worry that you have been under treated, and that that has resulted in organ involvement. I think doctors vary in whether Plaquenil is necessary to keep UCTD from progressing. I have had UCTD for a long time and fit the profile of stable undifferentiated connective tissue that is seen as having a milder course. If your doctors felt Plaquenil was necessary to stop your disease from affecting vital organs, they would have told you. Usually stable UCTD patients do not develop brain or kidney disease.

You might want to ask about the type of kidney disease you have. They can tell by certain features if it is related to your autoimmune disease.

Try not to blame yourself. It does not sound like not taking the medication has harmed you.

K

[kyliesinead in reply to KayHimm]

Thank you for sharing your experience with me. It was useful for me go hear this. I'm happy the way things are as I'm leading a normal (ish) life. I'm not worried about my CKD as it's being monitored. My view has always been, if I can manage without meds, then I'll do so for as long as is possible. Thanks again for responding xx

[KayHimm in reply to KayHimm]

You are welcome. I have read that UCTD, when it evolves to lupus, scleroderma or primary Sjogren’s, usually does so in the first few year. You have not progressed for nearly seven years. I think your doctors would say that is a good sign! I have never been on Plaquenil and do have autonomic neuropathy and low level CNS involvement. I have no regrets about not being on it. There is no evidence it would have prevented this nor that it will stop progression now.

You should feel good about your decision and know your doctors would have been insistent if they thought it would help.

With lupus it is a whole different story. They seem to want all lupus patients on Plaquenil to prevent organ damage. This is one very important reason to distinguish between stable UCTD and lupus.

Wishing you the best

xK

[kyliesinead in reply to KayHimm]

Thank you for another informative reply. Very much appreciated. To be honest, I don't really pay much heed to my condition as it doesn't pay much heed to me. It was only the CKD which nudged me to consider it. I am mostly optimistic and continue to live life to the full. Yes, I agree that my unwillingness to take meds may have ultimately led to my kidneys being in better condition than they may have been. Hope you are well and if so continue to be so.

[KayHimm in reply to kyliesinead]

Just wanted to clarify that I think the doctors would say your not taking the drugs did not affect your kidneys. UCTD does not cause the nephritis lupus causes. If you had nephritis, they would probably change your diagnosis to lupus. If they say your kidney disease is not lupus related, I would believe them. They watch the kidneys very carefully in people with autoimmune disease. I know. I have been through a scare.

Like you, I am doing well. Have periods when I am less okay, but happy to be in a good phase. New medication is helping my my weird head stuff. 😀