Gave Up on Facebook Groups

[GPA4Me]

Hello All,
My name is Larry. I am 69 years old and live in Florida. I was DX in June of 2017. Nearly died. Spent 4 months (March-June) in pain going to several doctors with no DX. On the last day of June, I was told my kidneys were in complete failure and I should go to the ER. Spent 3 weeks in the hospital and the next several years recovering. I am currently in remission. I was a member of several Facebook groups for WG and CKD but got tired and fed up with FB so I terminated my account. Hope to share some experiences and thoughts with you all.

[andrew]

Hi Larry!
Good to have you here. I tend to stay away from FB myself these days although my account is still active. Glad you're in remission though after all that. How's your kidney function looking? I had kidney involvement too. Mine hovers between 40% and 50% most of the time.

Cheers
Andrew

[me2]

Good to see you here Larry. This is a great community of knowlegable and supportive people. I myself have never used Facebook group for WG.

[drz]

Hi Larry!
Good to have you here. I tend to stay away from FB myself these days although my account is still active. Glad you're in remission though after all that. How's your kidney function looking? I had kidney involvement too. Mine hovers between 40% and 50% most of the time.

Cheers
Andrew


A few months ago I tried setting up a Facebook account to access some help on a diabetic forum but was expelled by Facebook after a few minutes for reasons I never understood. I used the same info I used here to gain access this forum with different log in but Facebook said I didn't meet their standards or some such reason. I had never used it before so didn't really mind not having access to it but thought it was ridiculous to ban me. A grandson in computer science told me maybe they doubted I could be a real person since I didn't have any Facebook presence or history. It just reinforced my animosity toward Facebook.

[andrew]

A few months ago I tried setting up a Facebook account to access some help on a diabetic forum but was expelled by Facebook after a few minutes for reasons I never understood. I used the same info I used here to gain access this forum with different log in but Facebook said I didn't meet their standards or some such reason. I had never used it before so didn't really mind not having access to it but thought it was ridiculous to ban me. A grandson in computer science told me maybe they doubted I could be a real person since I didn't have any Facebook presence or history. It just reinforced my animosity toward Facebook.

Yeah no one knows how they assess things but it seems odd that they stopped you immediately. You're not missing much though :)

[Peter Marsham]

Yeah, Facebook is not really a great resource for in-depth analyses of rare diseases. More likely than not, you’ll get roped into a group trying to sell you Activated Water or something (there are lobby groups which hijack sickness groups and forums for just such purposes).

Glad to hear you’re in remission, are you still on meds, or are you being tapered down?

[drz]

Yeah no one knows how they assess things but it seems odd that they stopped you immediately. You're not missing much though :)

I appealed their ban but they confirmed it and said it could not be appealed but no reasons or explanation was ever given and said their decision was final. What I think is ironic thousands of fake accounts are set up and used every day for political purposes by countries pursuing their political cyber warfare.

[GPA4Me]

When I checked in to the hospital in 2017, my creatinine was 8 and my GFR was 6. I did dialysis for a year and when I came off, my creatinine was around 3.5. It started getting a little better over time and it has been anywhere from 2.14 to 2.8 over the past 2 years. So my GFR has fluctuated between 23% to 30%. I'm ok with that and just hope it stays there for a long time.

[GPA4Me]

Yeah, Facebook is not really a great resource for in-depth analyses of rare diseases. More likely than not, you’ll get roped into a group trying to sell you Activated Water or something (there are lobby groups which hijack sickness groups and forums for just such purposes).

Glad to hear you’re in remission, are you still on meds, or are you being tapered down?

I was very lucky that my Nephrologist is very knowledgeable about WG and he manages both diseases for me. He had me stop the Prednisone and Azathioprine in Sept 2019. My Anca was negative at that time and my kidneys had healed enough to where he was happy. He is not a believer in the Rituxan every 6 months. His quote to me was, "why would I give you a drug that is going to kill your immune system and make you susceptible to infection when you don't need it?" When I was on the FB group for WG, most people on there were getting the Rituxan every six months as a maintenance drug.

[Peter Marsham]

Nice to hear you’re getting off the drugs! Your nephrologist is right, there’s no point giving an immunosuppressant if there’s no need. The Rituxan infusions pretty much come down to individual cases and the particular doctor you’re seeing. Keep in mind, though, we’re trying to fight our own immune system and stop it killing us, so I’m willing to get an occasional maintenance therapy if my rheumy recommends it (and always hoping the next one may be the last one). I can’t wait to hear my guy say the same thing to me.

stay well, hope those kidneys keep improving.

[gilders]

When I checked in to the hospital in 2017, my creatinine was 8 and my GFR was 6. I did dialysis for a year and when I came off, my creatinine was around 3.5. It started getting a little better over time and it has been anywhere from 2.14 to 2.8 over the past 2 years. So my GFR has fluctuated between 23% to 30%. I'm ok with that and just hope it stays there for a long time.
Hi Larry. Welcome to the forum.
Glad your kidneys healed somewhat after a year of dialysis.
I hope your function stays above 20%. I found that once my function dropped to 18% it was a steady and permanent decline.

[GPA4Me]

I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?

[drz]

I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?

My kidney damage was initially caused by decades of diabetes but Wegener's granulomatosis nearly finished them off. I had been told by my nephrologists that it is normal to lose about 5% kidney function each year as you reach a certain age. I have been fortunate for several years not to be experiencing such an annual decline but with aging and ongoing diabetes further loss of kidney function is most likely.

One of our more active user years ago was Jack who often warned about the risk of losing your kidney function very quickly with little or no warning. That had happened to him. So it is important to monitor our kidney function on an ongoing basis.

[gilders]

I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?

Kidney function can jump around quite a bit, be it a different lab, what you've eaten and most importantly how well hydrated you are.
Your best route to keeping kidneys healthy is to be well hydrated at all times, keep your blood pressure at a good level and if there is a disease/illness (e.g. vasculitis/Wegener's) that is "attacking" your kidney, get that disease in remission and keep it in remission.

My kidney function decline was caused by Wegener's. I have had a long journey with Wegener's and in brief (sticking to kidney issue) I lost all function 24 years ago, but regained a good amount after treatment for Wegener's and about a month or two of dialysis. During those 24 years my kidney function was quite stable until I had various relapses which would knock a good percentage of my function off permanently. My function hit 18% around 5-6 years ago and at that point my function went on a steady downward trend even without any flares of Wegener's. I had my kidney transplant 2 years ago and as far as my kidney is, it;s going very well with a function that fluctuates between 42% and 49%.

If you want any more detailed answers regarding kidney issues I'm here to help.

[GPA4Me]

My kidney damage was initially caused by decades of diabetes but Wegener's granulomatosis nearly finished them off. I had been told by my nephrologists that it is normal to lose about 5% kidney function each year as you reach a certain age. I have been fortunate for several years not to be experiencing such an annual decline but with aging and ongoing diabetes further loss of kidney function is most likely.

One of our more active user years ago was Jack who often warned about the risk of losing your kidney function very quickly with little or no warning. That had happened to him. So it is important to monitor our kidney function on an ongoing basis.

I would be really worried if I lost 5% every year. My nephrologist told me starting at age 45 you start to lose 1% a year. Several answers from a Google search showed a value that I believe works out to be 1%. This excerpt is taken from an NIH document.
In the original studies of Davies and Shock the average decline in GFR was 0.96 ml/min/year or about 10 ml/min/decade (7). The filtration fraction (GFR divided by Renal Plasma Flow or RPF) tended to remain constant until about age 65 years and older (7).

[drz]

I would be really worried if I lost 5% every year. My nephrologist told me starting at age 45 you start to lose 1% a year. Several answers from a Google search showed a value that I believe works out to be 1%. This excerpt is taken from an NIH document.
In the original studies of Davies and Shock the average decline in GFR was 0.96 ml/min/year or about 10 ml/min/decade (7). The filtration fraction (GFR divided by Renal Plasma Flow or RPF) tended to remain constant until about age 65 years and older (7).


So did your research suggests the rate of decline increases at the age of 65 and older. I was over that age with about 40% normal kidney function at the time so I understood the doctor to say if I lost another 5% of the 40% it would be an additional 2% loss and bring me down to 38% normal kidney function. Being an older senile citizen I may have misunderstood or recalled the statements incorrectly. I do remember being pleased that my annual checkups did not reveal any further decrease in my kidney function for several years and they even improved from my initial severe attack of Wegener's for several years.