Ckd and mineral bone disease

[Starrstruck]

I have ckd stage 4 ,gfr 22 I was told to restrict my protein to keep my gfr stable.Now I have mineral bone disease and I need more protein to keep my muscles from wasting away.My muscles and bones hurt even my jaw and teeth are affected. I'm not on dyalisis yet.Does anyone know about this problem.I just don't know what to do about the protein situation

[Bassetmommer NKF Ambassador]

This is definitely a conversation to have with your doctor. Not us. If you have been told to restrict, it is because of the CKD. A lot of us do limit protein. But when it starts to affect other parts of the body, it should be something your doctor is on top of. Also, more than protein affects the bones. Calcium and parathyroid issues are also something your doctor should be watching and monitoring. Phosphorous levels can put those things out of wack.

[Starrstruck in reply to Bassetmommer]

Thanks,I am planning on talking to my Dr about calcium because he told me to not eat anything with calcium, so I get very little.It is time for another parathyroid scan so I'll see how that goes.I mainly want to know if anyone else had mineral bone disease as a complication of ckd

[ashok5085]

Check your PTH level

[Starrstruck in reply to ashok5085]

PTH was OK, but I get bloodwork again next week so who knows ? Thanks for responding !

[Chucka]

Hi Starrstruck. Sorry to hear about your situation. Definitely talk to your doctor. I thought I would share: I am ckd stage 4 too (eGFR 28). Nine months ago my nephrologist told me I needed to give up animal based proteins so I have been vegan since then. Partly due to trying to prevent gout and partly due to too much protein leakage from my kidneys. I have had some muscle wasting and get aches in my muscles and bones. I have been trying to eat more plant proteins. Soy, lentils, etc. I have had osteoporosis for about ten years (I am 63 year old female), and I do take calcium and Vit D-3 and Vit K2 plus a prescription osteoporosis med. Recently I was advised to take Vit B-12 supplements. They can help with muscle and metabolism. Every human is a delicate balance of chemicals and hormones and it can be a struggle to figure out what you need. Then it seems like almost as soon as you figure it out, your body changes again and you have to figure out something else. You have my sympathy and I hope you can find what you need to stay as healthy as possible for as long as possible.

[TheNarrowPath in reply to Chucka]

If you like Pate it has a lot of B12.

[Chucka in reply to TheNarrowPath]

thanks. I cannot eat any animal based things so no pate. But maybe Starrstruck can!

[Starrstruck in reply to Chucka]

Thanks for the info ! I just got put on b12 and have been taking d3 but not calcium, and I think I need it.My dr keeps telling me to stay away from all cheese,milk,etc. Surely everyone needs some calcium. I am going to see him in March and try to talk to him again.I am also waiting for the results of the bone scan I had yesterday.Thanks for sharing its helped !!

[orangecity41 NKF Ambassador in reply to Chucka]

I too have prescribed CKD diet and also restricts protein also to prevent gout. Also B12 prescribed for me along with D3. I was diagnosed at 3B and am 81, so do have some muscle wasting.

[KidneyCoach NKF Ambassador]

Firstly have you been told you have bone mineral disease or assume you have it? To put it simply the disease typically shows in CKD stage 5 due to phosphorus/calcium/pth levels imbalances. Did someone say this, how exactly?

[Starrstruck in reply to KidneyCoach]

I have been having muscle and bone pain my nephrologist looked at my bloodwork ran another PTH and said I had mbd.I just had a bone density test yesterday and am scheduled for a parathyroid scan.My concern is he seems wishy washy about if I should keep restricting my protein and calcium intake.I don't know what to do.Thank you for responding !

[PecanSandie]

I am in the same boat and I have given up trying to get one of my doctors to put it all together. They try to fix one problem but then another gets thrown off balance. I have osteoporosis and it's getting better because I am taking Boniva; however, my PTH level is getting higher. So which doctor gets to call the shots - the endocrinologist or the nephrologist? I have no idea.

[Starrstruck in reply to PecanSandie]

Thank you for sharing. I just had a bone scan yesterday so who knows what that will show.It sounds like we're both in a catch 22.I live in a rural area and I don't have much confidence in the drsI hope your drs get together and find a solution that works for you !

[chicablue]

When I first got to stage 4 when they said reduce protein, we got a food scale and weighed my protein and limited it to 3/4 oz. After several months I developed similar symptoms with muscle a nd bone pains including jaw pain. Also told I had minor heart dysfunction. Did my own research and found the heart needs adequate protein to function properly, so I increased my protein by 1/4 oz. Doctors around here dont want to discuss diet! I feel much better now, and that minor change has not affected my gfr.

[GoldenBailey in reply to chicablue]

You ask if anyone else has mineral bone disease as a chronic kidney disease complication. Yes, I believe it can be a fairly common effect. I am only in Stage 4 but even in stage three I was diagnosed with MBD. Also while in Stage 3, I've taken two slight falls and broke a hip both times. Part of my lower spine collapsed and I'm very hump shouldered now. They continue it all to CKD and MBD. Every time I get a CT scan or MRI for an unrelated issue, they freak out about the severity of the MBD. I'm on Prolia, which MIGHT be causing its own issues because of low eGFR when given. Good luck traveling this road.

[Starrstruck in reply to GoldenBailey]

Sorry that your in such shape,It is a help to know I'm not alone.I'm wondering if your dr has restricted your protein or calcium intake. I am in stage 4 egfr 22 and I just don't know what to eat anymore. Thank you and my prayers are with you

[GoldenBailey in reply to Starrstruck]

I also live in a rural mountainous area but drive the necessary distance for good care. My diet is probably a little more complex than yours and I'm not sure you can compare the diet your doctor recommends to another person's case. Have you met with a kidney dietitian? That may be helpful. Yes, I'm at about 17% in stage 4 now and I've been told to restrict my protein. I'm also diabetic and if the diabetes is not property controlled, it negatively impacts the kidneys as well. The diabetic diet and kidney diets directly conflict each other. Must control carbs because of diabetes, must control protein because of kidneys and must control fats for the damage all this has done to my heart. There isn't anything left so I just try to do everything in moderation. I actually need to raise calcium because I'm losing serum calcium. Even though I lose most protein in my urine - I run about 4000 (should be less than 30) - and my serum protein is low, I'm still told to restrict protein. So, my advice would be, if any way possible, to hook up with a good nephrologist that you have confidence in, even if you need to drive a distance, like I do, and definitely meet up with a kidney-specific dietician. Once you have confidence in your doctor, that's much of the battle, and you will feel good about following his/her advice. You're more likely to follow the prescribed diet if you have confidence it's the best one for YOU. Best wishes in your journey.

[Starrstruck in reply to GoldenBailey]

Thank you for the advice

[Starrstruck in reply to chicablue]

Thank you for the infoI live in a rural area and I don't feel like the drs are the best.One says constrict protein another says don't also they say nothing with calcium, surely bones need some calcium.My jaw is affected too. I will try what you suggest.Thanks and good luck to you