Kidney function and medications

Posted by Ginger, Volunteer Mentor @gingerw, Apr 24 10:22am

Do you have Chronic Kidney Disease along with another health issue? How do you cope with the fact often we cannot use the accepted medications because it will not clear our kidneys?

Here is my story: I am firmly in Stage 4 CKD, and may face a decision to go on dialysis later this year. Meanwhile, since January 2021 my lower back has messed up. The medications best used for pain relief, cannot be put in place because they are not recommended for my level of kidney function. No gabapentin, no Aleve, no aspirin. Acetaminophen only. I am going to get a spinal injection of cortisone, but will opt for local numbing only, no sedation. I use homeopathic topical creams to help some of the pain.

As fellow kidney patients, what do you do? It seems unfair we cannot get the relief we need. Please share your experiences and what has worked for you.

Ginger,
I also face the issues with stage 4 CKD and medications for pain for low back pain. I refuse to take the injections as usually I have to travel alone. My kidney doctor says you can take up to 1200 mg daily of gabapentin but I have been on it so long that it no longer works. I have resorted to CBD gummies which help but are costly. My medication list is so long due to other diseases and just trying to keep progression slowed that to add even one more medication would send me over the edge. I also am facing dialysis later this year and personally decided that being pain free and living with dialysis is better for me than living with pain. At this point and time, I am looking for quality of life over quantity of life. Many patients can live for years on dialysis. I also have exercises which can be done safely in a chair or stretches that is done laying flat on the floor (I have to have someone help me up after though). Right now, with 8 physicians for multiple issues our goal is to keep my eyesight, reduce my pain, and work for a quality of life. So far, my eyesight is the only thing we have managed to save as you just keep treating symptoms and the list of medications to have to monitor and keep track of is so time consuming that your quality of life is messed up anyway.
I hope you find something that works for you but like I said, I found that CBD gummies and warm tea seems to be better than any other drug they allow.
Good luck.

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@devonsnana

Ginger,
I also face the issues with stage 4 CKD and medications for pain for low back pain. I refuse to take the injections as usually I have to travel alone. My kidney doctor says you can take up to 1200 mg daily of gabapentin but I have been on it so long that it no longer works. I have resorted to CBD gummies which help but are costly. My medication list is so long due to other diseases and just trying to keep progression slowed that to add even one more medication would send me over the edge. I also am facing dialysis later this year and personally decided that being pain free and living with dialysis is better for me than living with pain. At this point and time, I am looking for quality of life over quantity of life. Many patients can live for years on dialysis. I also have exercises which can be done safely in a chair or stretches that is done laying flat on the floor (I have to have someone help me up after though). Right now, with 8 physicians for multiple issues our goal is to keep my eyesight, reduce my pain, and work for a quality of life. So far, my eyesight is the only thing we have managed to save as you just keep treating symptoms and the list of medications to have to monitor and keep track of is so time consuming that your quality of life is messed up anyway.
I hope you find something that works for you but like I said, I found that CBD gummies and warm tea seems to be better than any other drug they allow.
Good luck.

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@devonsnana Thank you so much for your words and message. I bet more than just myself have heard the encouragement you wrote into your words. Like you, I choose quality rather than quantity. My oncologist says no problem to do my multiple myeloma treatments through dialysis.

I use CBD capsules to help with pain control, and in the topical arsenal is is both CBD cream and arnica montana cream. A cuppa warm tea helps me relax each night, and the intention set in my mind then is to have a restful rest. Most nights I am in the recliner rather than a bed; our cat loves it!

Please, let's stay in touch! Knowing there is someone on a similar journey gives us more strength!
Ginger

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@gingerw

@devonsnana Thank you so much for your words and message. I bet more than just myself have heard the encouragement you wrote into your words. Like you, I choose quality rather than quantity. My oncologist says no problem to do my multiple myeloma treatments through dialysis.

I use CBD capsules to help with pain control, and in the topical arsenal is is both CBD cream and arnica montana cream. A cuppa warm tea helps me relax each night, and the intention set in my mind then is to have a restful rest. Most nights I am in the recliner rather than a bed; our cat loves it!

Please, let's stay in touch! Knowing there is someone on a similar journey gives us more strength!
Ginger

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I would love to keep in touch.
For those struggling let me just say, I came to terms of all the chronic illnesses by just accepting the fact that our lord would not give me more than I could handle and that we are the chosen ones. Those to have the diseases so physicians and scientists can do their research and learn how to handle these diseases are chosen because we have the inner strength to handle all the obstacles we must face daily to survive.

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@devonsnana

I would love to keep in touch.
For those struggling let me just say, I came to terms of all the chronic illnesses by just accepting the fact that our lord would not give me more than I could handle and that we are the chosen ones. Those to have the diseases so physicians and scientists can do their research and learn how to handle these diseases are chosen because we have the inner strength to handle all the obstacles we must face daily to survive.

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@devonsnana I tell myself that most days, and thanks again for reminding me. My kidney and other health issues are such a strange combination. And I realize that while each person has a unique set of issues to deal with, we all still have things in common. We each may experience different reactions to protocols of treatment. Sometimes my inner strength takes a back seat and it all becomes overwhelming.
Ginger

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@gingerw

@devonsnana I tell myself that most days, and thanks again for reminding me. My kidney and other health issues are such a strange combination. And I realize that while each person has a unique set of issues to deal with, we all still have things in common. We each may experience different reactions to protocols of treatment. Sometimes my inner strength takes a back seat and it all becomes overwhelming.
Ginger

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I understand the inner strength taking a back seat and how it all becomes overwhelming. I at time just want to throw in the towel. It has been an ongoing battle for over 60 years, and some of the physicians I have seen through the years I pray are no longer practicing due to their God complex and the refusal to listen to patients. And now with multiple doctors in different networks trying to keep all of them up to date on all tests run and different diagnoses is a challenge. We must advocate for ourselves and I actually now keep a record of everything at home to carry to each physician. We must educate ourselves to all the current data, medications, and research as many of us have the outside the box diagnosis. I actually ask one physician recently if he has ever suffered with a long term illness and if he actual understands not just the physical but the mental aspects of dealing with such. He said no, but then he went on to say that he has always taken care of himself so he doesn't see it happening. I asked him for further details and he actually stated that because I didn't properly care for myself that it was my fault I was ill and I should not look for a cure or relief until I met his standard of self care. Needless to say he is no longer one of my physicians. Those of us that suffer also needs to understand that if their physician does not seem knowledgeable of the condition we are suffering with and does not seem motivated enough to learn or if you are not comfortable with them it is perfectly okay to find another physician that does.
Only each one of us knows the struggle we face daily and I don't know about you but I cannot afford to run to a therapist or doctor with each new depressive episode or symptom as these can change daily. I do depend on online forums, even if it is just to read others trials and know I am not alone in all the struggles that we face daily.
Barb

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Hello to all. I’d like to put in a word about various challenges we all face from the day we are born. I turn age 80 this year, have had asthma continuously since age two, have PMR, a son on every other day dialysis, etc. I grew up in a children’s home, was rejected by both parents who remarried and started new families that did not include me, got pregnant in college, have had 3 husbands. But one thing I’ve learned is that we often speak our own success or failure! In other words, every day I take deep, full breaths, stand straight and tall, and say “I AM!” or “I CAN”!, as in, I have the power to be weak or strong regardless of any challenge. It all depends on the WORDs that I choose to think and/or speak. Of course this is a continuous routine, but amazingly effective. “In the beginning was the WORD…..” I hope this is helpful to someone. 😊

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Hi @barbq I have CKD 3B nearing Stage 4 with a GFR of 34. I am wondering if Lidocaine Patch 5% could be used in Stage 4. They are Generic now (used to cost $400-500) when Brand Name. There are 30 patches per box. You can wear one patch for 12 hours a day Maximum. They are Prescribed but you can find some OTC ones but I think they may have Menthol in them also, such as Salonpas. I used them on my lower back after a painful fall and they really helped. They are large patches that are 10×14 cm. You can cut them and store the rest of the patch in a ziplock bag. You could ask your doctor about them.

NJH

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I’m sorry @barbq , my response should have gone to @gingerw

NJH

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@njh

Hi @barbq I have CKD 3B nearing Stage 4 with a GFR of 34. I am wondering if Lidocaine Patch 5% could be used in Stage 4. They are Generic now (used to cost $400-500) when Brand Name. There are 30 patches per box. You can wear one patch for 12 hours a day Maximum. They are Prescribed but you can find some OTC ones but I think they may have Menthol in them also, such as Salonpas. I used them on my lower back after a painful fall and they really helped. They are large patches that are 10×14 cm. You can cut them and store the rest of the patch in a ziplock bag. You could ask your doctor about them.

NJH

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@njh Welcome to Mayo Connect! We're glad to see your input. In the last two months things have changed up in my back, and as there is no longer any back pain, but lower left leg is numb. I am going to try your suggestion about the patch, on my foot! What can it hurt, right!?

@devonsnana How are you doing? I get my CBD gummies from Lazarus Naturals, buying a 200 count bottle of 50mg softgels for $200. A dollar a softgel, one a day, is good for me. And that cuppa warm tea at night.

I am so glad to read of others' journeys here. And happy to see us share. It surely makes us feel less "on our own" doesn't it?
Ginger

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@barbq

Hello to all. I’d like to put in a word about various challenges we all face from the day we are born. I turn age 80 this year, have had asthma continuously since age two, have PMR, a son on every other day dialysis, etc. I grew up in a children’s home, was rejected by both parents who remarried and started new families that did not include me, got pregnant in college, have had 3 husbands. But one thing I’ve learned is that we often speak our own success or failure! In other words, every day I take deep, full breaths, stand straight and tall, and say “I AM!” or “I CAN”!, as in, I have the power to be weak or strong regardless of any challenge. It all depends on the WORDs that I choose to think and/or speak. Of course this is a continuous routine, but amazingly effective. “In the beginning was the WORD…..” I hope this is helpful to someone. 😊

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WOW! You are my role model. This is just the kind of thing I need to be reminded about

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Hello, Ginger and all. @gingerw, @m1miller, @njh , @barbq, @devonsnana, @colleenyoung

I'm a couple years on various connect groups but new to the kidney group. I'm 74, live in Florida, have a bunch of junk for many years like most of us here, and just got new testing re super high protein and infections in urine a couple of weeks ago w/UTI, landing me in the Mayo Hospital on a fun Sat. afternoon. I'm seeing a nephrologist and infectious disease specialist now, last week, first visits with each.

Nephrology sent me for lots of tests last week, and I'm doing a 24 hour urine Monday. So far, tests indicate ANCA Vasculitis, a new one for me. I have sarcoid since I was 40, been in and out of remission with a love/hate relationship with prednisone. They seem to like me, these autoimmune diseases. I'm on prednisone now for sinus/headaches/face/neck pain, PCP thinking it might be related to migraine or ???so he put me on the perfect med for vasculitis. God is good.

Also, the infectious disease doc yesterday put me on a long-tern dose of 500mg Keflex to manage the multiple and serious UTI;s this last year. One with sepsis, this last one with 600+ protein and high infections, blood count. That med may change now with this results, see what nephrology says. I hope to see her this week.

Prednisone has given me a bit of energy, but wow am I drained. I spent 3 days in hospital last week, from Sunday, I thought from exhaustion and stress from my own issues and my son was in a medical crisis and admitted to Mayo Hospital through ED on Sat., but probably was actually Vasculitis, symptoms fit but urine was ok.

Amazing things, these bodies of ours. I'm constantly impressed with what our Lord did when he put us together. Amazed and stumped. I often wonder why I am, as you said, one of the chosen. I've had many conversations with Him about all this stuff in life. What a mess! I know I'm strong. Don't want to be. I know the Bible teaches we won't have more than we can handle, we're learning…..I don't want to learn any more; Smart and strong enough, thank you….

Well, that's my story, a bit of it anyway. I've appreciated so much of what you folks have said and shared. You're much further down this path of course than I, and dealing with everything with such good spirits. I admire you all. I don't know what the doctors will tell me of course, or what they plan. But, I'm so very thankful, so blessed to be installed and working with the marvelous Mayo system. God is taking care of me. I thank Him for getting me to these docs and to this site. What a blessing Connect has been to me these last couple of years.

I hope you all have a good rest this evening, filled with peace and healing. Good for CBD gummies!
Blessings, elizabeth

REPLY
@ess77

Hello, Ginger and all. @gingerw, @m1miller, @njh , @barbq, @devonsnana, @colleenyoung

I'm a couple years on various connect groups but new to the kidney group. I'm 74, live in Florida, have a bunch of junk for many years like most of us here, and just got new testing re super high protein and infections in urine a couple of weeks ago w/UTI, landing me in the Mayo Hospital on a fun Sat. afternoon. I'm seeing a nephrologist and infectious disease specialist now, last week, first visits with each.

Nephrology sent me for lots of tests last week, and I'm doing a 24 hour urine Monday. So far, tests indicate ANCA Vasculitis, a new one for me. I have sarcoid since I was 40, been in and out of remission with a love/hate relationship with prednisone. They seem to like me, these autoimmune diseases. I'm on prednisone now for sinus/headaches/face/neck pain, PCP thinking it might be related to migraine or ???so he put me on the perfect med for vasculitis. God is good.

Also, the infectious disease doc yesterday put me on a long-tern dose of 500mg Keflex to manage the multiple and serious UTI;s this last year. One with sepsis, this last one with 600+ protein and high infections, blood count. That med may change now with this results, see what nephrology says. I hope to see her this week.

Prednisone has given me a bit of energy, but wow am I drained. I spent 3 days in hospital last week, from Sunday, I thought from exhaustion and stress from my own issues and my son was in a medical crisis and admitted to Mayo Hospital through ED on Sat., but probably was actually Vasculitis, symptoms fit but urine was ok.

Amazing things, these bodies of ours. I'm constantly impressed with what our Lord did when he put us together. Amazed and stumped. I often wonder why I am, as you said, one of the chosen. I've had many conversations with Him about all this stuff in life. What a mess! I know I'm strong. Don't want to be. I know the Bible teaches we won't have more than we can handle, we're learning…..I don't want to learn any more; Smart and strong enough, thank you….

Well, that's my story, a bit of it anyway. I've appreciated so much of what you folks have said and shared. You're much further down this path of course than I, and dealing with everything with such good spirits. I admire you all. I don't know what the doctors will tell me of course, or what they plan. But, I'm so very thankful, so blessed to be installed and working with the marvelous Mayo system. God is taking care of me. I thank Him for getting me to these docs and to this site. What a blessing Connect has been to me these last couple of years.

I hope you all have a good rest this evening, filled with peace and healing. Good for CBD gummies!
Blessings, elizabeth

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Good Luck

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