@kkellner since you are posting in the CKD group I’m assuming that you have CKD. Does the Dr. that prescribes the lithium know that you have CKD? Could you talk to this provider about your concerns regarding lithium and CKD and inquire about an alternative medication?
Thanks for your comment. Yes I have stage 3B of CKD. I tried 3 years ago to wean off lithium on Lamotrigine and Abilify. My current psychiatrist knows I would love to be off lithium. It's just a scary thought since I hit bottom-and I have young kids. I will try again when the time is right.
In know this is sort of off topic, but for those of you who took lithium, but are not any more, did you replace it with an effective medication? I have tried to go off and it has not worked.
In know this is sort of off topic, but for those of you who took lithium, but are not any more, did you replace it with an effective medication? I have tried to go off and it has not worked.
@kkellner I was taking 300 mg of lithium for several years (after being on 2400 mg for 30 years, way too much and probably the cause of my stage 4 CKD). I dropped to 150 mg about 4 months ago with my physc approval. It took about 2 - 3 months to stabilize. My phsyc wants me to hold at 150 mg for 6 more months. Then we will probably do every other day and eventually taper off completely. Other drugs don’t work, so I try self calming techniques like biting my lip, counting to 10, deep breathing, and prayer. I do believe prayer helps me let go of anxiety and cools my temper and helps me let go of whatever is causing my anxiety.
@kkellner I was taking 300 mg of lithium for several years (after being on 2400 mg for 30 years, way too much and probably the cause of my stage 4 CKD). I dropped to 150 mg about 4 months ago with my physc approval. It took about 2 - 3 months to stabilize. My phsyc wants me to hold at 150 mg for 6 more months. Then we will probably do every other day and eventually taper off completely. Other drugs don’t work, so I try self calming techniques like biting my lip, counting to 10, deep breathing, and prayer. I do believe prayer helps me let go of anxiety and cools my temper and helps me let go of whatever is causing my anxiety.
@martychambers I sorry there is not an easy answer that I know of. Just that you need to know your body. Some advice is read things on the internet, but make sure the sites are reputable. I did this and found out my nephrologist didn't know my medication as well as he should have. I did find an arthritis doctor that helped me find the right way. Hope you can find an answer that will help.
@kkellner I was taking 300 mg of lithium for several years (after being on 2400 mg for 30 years, way too much and probably the cause of my stage 4 CKD). I dropped to 150 mg about 4 months ago with my physc approval. It took about 2 - 3 months to stabilize. My phsyc wants me to hold at 150 mg for 6 more months. Then we will probably do every other day and eventually taper off completely. Other drugs don’t work, so I try self calming techniques like biting my lip, counting to 10, deep breathing, and prayer. I do believe prayer helps me let go of anxiety and cools my temper and helps me let go of whatever is causing my anxiety.
@martychambers
Thanks for your post. Your taper sounds like a solid one. I am currently on 750mg of lithium. I am able to play tennis and socialize more that my kids are getting older. I am am empth and prone to anxiety and depression but I think pretty self aware and talk about it-which helps.
@kkellner I was taking 300 mg of lithium for several years (after being on 2400 mg for 30 years, way too much and probably the cause of my stage 4 CKD). I dropped to 150 mg about 4 months ago with my physc approval. It took about 2 - 3 months to stabilize. My phsyc wants me to hold at 150 mg for 6 more months. Then we will probably do every other day and eventually taper off completely. Other drugs don’t work, so I try self calming techniques like biting my lip, counting to 10, deep breathing, and prayer. I do believe prayer helps me let go of anxiety and cools my temper and helps me let go of whatever is causing my anxiety.
@martychambers
Hi,
2400 mg of lithium is high…for 30 years. Your kidneys kept working and that’s amazing. My disease from lithium is nephrogenic diabetes insipidus which the kidneys don’t process ADH hormone which causes dehydration and scarring the tubules. I don’t have proteinuria, normal blood pressure, not diabetic. So I’m thirsty a lot and drink about 80 oz of water a day. For me, infection (sepsis) and Covid really brought my eGFR down. Since I’m 68 it’s harder to fight those things. Everything else is normal. I feel great and exercise.
Hello my Name is Enid and I am new to this group. I am currently on dialysis. I started dialysis last year. I have been experiencing doctors not explaining anything to you on what it means to go on dialysis. Bedside manners that are empty without compassion or empathy. I have experienced where they don't want to answer your questions. I was made to get a fistula without being explained what it entails to get one. I still don't know what caused me to get to stage for kidney disease. I still can urinate and wonder if I can reverse dialysis. Doctors don't want to help me find holistic solutions. I feel like as long I sit in those dialysis chairs with my MR# attached that I'm just their paycheck at the end of the week. They don't want to help get you better they just manage you until you die. Can anyone please Help Me.
Hello my Name is Enid and I am new to this group. I am currently on dialysis. I started dialysis last year. I have been experiencing doctors not explaining anything to you on what it means to go on dialysis. Bedside manners that are empty without compassion or empathy. I have experienced where they don't want to answer your questions. I was made to get a fistula without being explained what it entails to get one. I still don't know what caused me to get to stage for kidney disease. I still can urinate and wonder if I can reverse dialysis. Doctors don't want to help me find holistic solutions. I feel like as long I sit in those dialysis chairs with my MR# attached that I'm just their paycheck at the end of the week. They don't want to help get you better they just manage you until you die. Can anyone please Help Me.
@enidbennett You are doing the right thing by coming here. This is very frustrating and confusing for those who aren't educated in medicine, biology, anatomy and pharmacology! The next step is to read the comments and issues here and at several other places like the National Kidney Foundation and the Davita website to find out what's best for you. You must be your own advocate, follow the dietary guidelines for your own lab reports. It must be said that you have the right to see your medical record, then find out what it means. If your doctor won't explain things to you, then get a different doctor!
While at dialysis is a good time to read up on things and ask questions to your nurses, look up the parts you don't understand. I find that a sense of humor will help with developing friendship with the people who work in the field.
There aren't any holistic solutions, no cure once the kidneys are damaged. Be very careful with supplements and vitamins. The best we can do is eat according to our labs, educate ourselves and do the best we can with what we've got! YOU CAN DO THIS! I want to offer you encouragement, maybe the idea to see a counselor or patient advocate to help you through this tough time. It has really helped me!
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Thanks for your comment. Yes I have stage 3B of CKD. I tried 3 years ago to wean off lithium on Lamotrigine and Abilify. My current psychiatrist knows I would love to be off lithium. It's just a scary thought since I hit bottom-and I have young kids. I will try again when the time is right.
I have just been diagnosed. I hear life expectancy is about 4 years, would that be true for someone in their eighties?
@kkellner Hi, Lithium is a mood stabilizer, so you can look up mood stabilizers to find additional drugs that can be prescribed in place of Lithium.
@kkellner I was taking 300 mg of lithium for several years (after being on 2400 mg for 30 years, way too much and probably the cause of my stage 4 CKD). I dropped to 150 mg about 4 months ago with my physc approval. It took about 2 - 3 months to stabilize. My phsyc wants me to hold at 150 mg for 6 more months. Then we will probably do every other day and eventually taper off completely. Other drugs don’t work, so I try self calming techniques like biting my lip, counting to 10, deep breathing, and prayer. I do believe prayer helps me let go of anxiety and cools my temper and helps me let go of whatever is causing my anxiety.
@martychambers I sorry there is not an easy answer that I know of. Just that you need to know your body. Some advice is read things on the internet, but make sure the sites are reputable. I did this and found out my nephrologist didn't know my medication as well as he should have. I did find an arthritis doctor that helped me find the right way. Hope you can find an answer that will help.
@martychambers
Thanks for your post. Your taper sounds like a solid one. I am currently on 750mg of lithium. I am able to play tennis and socialize more that my kids are getting older. I am am empth and prone to anxiety and depression but I think pretty self aware and talk about it-which helps.
I wish you the best!
kkellner
@dianamcclaran
Thank you. I know it is, but they all work so differently so I was curious about people's experiences.
@martychambers
Hi,
2400 mg of lithium is high…for 30 years. Your kidneys kept working and that’s amazing. My disease from lithium is nephrogenic diabetes insipidus which the kidneys don’t process ADH hormone which causes dehydration and scarring the tubules. I don’t have proteinuria, normal blood pressure, not diabetic. So I’m thirsty a lot and drink about 80 oz of water a day. For me, infection (sepsis) and Covid really brought my eGFR down. Since I’m 68 it’s harder to fight those things. Everything else is normal. I feel great and exercise.
Hello my Name is Enid and I am new to this group. I am currently on dialysis. I started dialysis last year. I have been experiencing doctors not explaining anything to you on what it means to go on dialysis. Bedside manners that are empty without compassion or empathy. I have experienced where they don't want to answer your questions. I was made to get a fistula without being explained what it entails to get one. I still don't know what caused me to get to stage for kidney disease. I still can urinate and wonder if I can reverse dialysis. Doctors don't want to help me find holistic solutions. I feel like as long I sit in those dialysis chairs with my MR# attached that I'm just their paycheck at the end of the week. They don't want to help get you better they just manage you until you die. Can anyone please Help Me.
@enidbennett You are doing the right thing by coming here. This is very frustrating and confusing for those who aren't educated in medicine, biology, anatomy and pharmacology! The next step is to read the comments and issues here and at several other places like the National Kidney Foundation and the Davita website to find out what's best for you. You must be your own advocate, follow the dietary guidelines for your own lab reports. It must be said that you have the right to see your medical record, then find out what it means. If your doctor won't explain things to you, then get a different doctor!
While at dialysis is a good time to read up on things and ask questions to your nurses, look up the parts you don't understand. I find that a sense of humor will help with developing friendship with the people who work in the field.
There aren't any holistic solutions, no cure once the kidneys are damaged. Be very careful with supplements and vitamins. The best we can do is eat according to our labs, educate ourselves and do the best we can with what we've got! YOU CAN DO THIS! I want to offer you encouragement, maybe the idea to see a counselor or patient advocate to help you through this tough time. It has really helped me!
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