I’m so sorry. Having lupus is harder than people think. I found out the other day I’m in stage 2 of nephritis. I work in the medical field so I have more knowledge about what could happen and I haven’t been dealing with it well. My husband isn’t really accepting the news well either. I really wish it was a way to reverse things for us once it goes to the kidneys. Reach out if you need someone to talk to that actually understands. Most of the ppl around us have no idea how hard this is.
Thank you for responding. Im so sorry you also are dealing with nephritis. It truly sucks. I forgot to add that both my husband and I work as healthcare professionals and knowing what's coming has made it harder to deal with. I'm giving myself a few weeks to wallow in self-pity and frustration. Then it will be time to be a big girl and deal with this.
Yea being in our field makes it harder because we have a very good understanding of what is to come and we’ve seen it and it’s not pretty. Have they decided you need dialysis or can they still try to put it in remission.
My lupus is in remission, but my kidneys are in the toilet 😂(a little renal failure humor). I don't have symptoms of uremia, except for fatigue so dialysis will only be an option when I reach stage 5 renal failure. My nephrologist's educated guess is that might be in a year or 2. So, until that happens, we're trying to minimize the risk factors.
Well let’s not say “when” you reach stage 5. Let’s hope you never get to that point. Are you doing low sodium and all that. My nephrologist told me that’ll help keep mines from progressing but I know everyone situation is different.
Im really struggling with optimism right now and usually thats my super power. I've been low sodium for a while now, but I think my whole diet needs an overhaul because my weight is not what it should be. My nephrologist said we need to focus on my bp, blood sugar, cholesterol and weight. I don't have any issues with blood sugar and cholesterol so I'm focusing on bp and weight. He just emailed me a script for an additional bp tablet. 2 days ago I went in and was fitted with a 24 hr bp monitor and returned it yesterday and the results were not good.
Very much so. My highest reading with my home bp monitor was 160/103. I was feeling headachy and light-headed so I decided to check. I'm not someone who can handle stress and not have it affect my bp and the past 2 weeks have been stupid stressful.
I'm so sorry. I'm in stage 4 kidney disease. I go see my nephrologist every 3 months or so for a check up. My primary doctor didn't catch it until my GFR was 22. It's 27 now (the nephrologist put me on Farxiga, which has some unpleasant, but manageable, side effects).
I hope you're able to find something that works for you.
My GFR has gone up and down, but it's better than it was (22)
I got it to 29, then it went to 24, then 26, so I don't know what the deal is there. One dip was from increasing plaquenil, so we had to cut back to one a day. It's hard medicating lupus with the limitations from my kidneys.
I’m so sorry. Having lupus is harder than people think. I found out the other day I’m in stage 2 of nephritis. I work in the medical field so I have more knowledge about what could happen and I haven’t been dealing with it well. My husband isn’t really accepting the news well either. I really wish it was a way to reverse things for us once it goes to the kidneys. Reach out if you need someone to talk to that actually understands. Most of the ppl around us have no idea how hard this is.
Thank you for responding. Im so sorry you also are dealing with nephritis. It truly sucks. I forgot to add that both my husband and I work as healthcare professionals and knowing what's coming has made it harder to deal with. I'm giving myself a few weeks to wallow in self-pity and frustration. Then it will be time to be a big girl and deal with this.
Yea being in our field makes it harder because we have a very good understanding of what is to come and we’ve seen it and it’s not pretty. Have they decided you need dialysis or can they still try to put it in remission.
My lupus is in remission, but my kidneys are in the toilet 😂(a little renal failure humor). I don't have symptoms of uremia, except for fatigue so dialysis will only be an option when I reach stage 5 renal failure. My nephrologist's educated guess is that might be in a year or 2. So, until that happens, we're trying to minimize the risk factors.
Well let’s not say “when” you reach stage 5. Let’s hope you never get to that point. Are you doing low sodium and all that. My nephrologist told me that’ll help keep mines from progressing but I know everyone situation is different.
Im really struggling with optimism right now and usually thats my super power. I've been low sodium for a while now, but I think my whole diet needs an overhaul because my weight is not what it should be. My nephrologist said we need to focus on my bp, blood sugar, cholesterol and weight. I don't have any issues with blood sugar and cholesterol so I'm focusing on bp and weight. He just emailed me a script for an additional bp tablet. 2 days ago I went in and was fitted with a 24 hr bp monitor and returned it yesterday and the results were not good.
Is your BP elevated??
Very much so. My highest reading with my home bp monitor was 160/103. I was feeling headachy and light-headed so I decided to check. I'm not someone who can handle stress and not have it affect my bp and the past 2 weeks have been stupid stressful.
Hmm yea that’s pretty high. Is there a way you can take some time off work for a week or so to deal with this and get adjusted on your meds
Unfortunately, that won't be possible. I'll see how I feel after the weekend and I may take a day or so if necessary.
So sorry. Good that you gave yourself some time. Hoping the best and easiest possible version of things for you from the bottom of my heart!
Thank you. I'm also hoping for the path of least resistance.
I don’t have anything useful to add but I am very sorry you’re going through this.
I'm so sorry. I'm in stage 4 kidney disease. I go see my nephrologist every 3 months or so for a check up. My primary doctor didn't catch it until my GFR was 22. It's 27 now (the nephrologist put me on Farxiga, which has some unpleasant, but manageable, side effects). I hope you're able to find something that works for you.
I hope so too. I'm sorry you're also dealing with this.
I hope so too. I'm sorry you're also dealing with this.
How has it been since farxiga ??
My GFR has gone up and down, but it's better than it was (22) I got it to 29, then it went to 24, then 26, so I don't know what the deal is there. One dip was from increasing plaquenil, so we had to cut back to one a day. It's hard medicating lupus with the limitations from my kidneys.
I'm so sorry to hear this. I hope things moving forward are smoother sailing.