Bone pain

[kamalshah20]

Thanks Pamster! I have found that if I am not proactive about my health, no one else in the world is going to be bothered, least of all the doctors!

Thanks
Kamal
http://kamaldshah.com

[kamalshah20]

Hi all,

Just got a bone density scan of the spine, a femur and a forearm and the scan is normal. The bone pain is not getting any better even after a month of calcitriol and cinacalcet. I am repeating my Calcium, Phosphorus and PTH today. I then go back to my neph.

Thanks
Kamal
http://kamaldshah.com

[kamalshah20]

My PTH is 179. My pre dialysis Calcium is 7.5 and post dialysis Calcium is 8.4. My pre dialysis Phosphorus is 2.4 and post dialysis Phosphorus is 1.1. I am on daily nocturnal.

My neph feels that the bone pain is due to the low Phosphorus. I have started adding a phosphate enema to the acid can of the dialysate in addition to taking a packet of Neutraphos in the morning.

I am also getting some X rays done today as my neph wants to see the status of the bones. He felt that the bone density scans do not always show the correct picture in renal disease.

Thanks
Kamal
http://kamaldshah.com

[aharris2]

Hi kamalshah20 (just read your blog... wow!)

Just a question, why is your phosphorus low? Most everyone fights a high phosphorus caused by diet - be it high in protein, cola beverages, or other sources (dried beans, processed foods, etc.)

[kamalshah20]

Thanks aharris!

I am on daily nocturnal home hemodialysis. This generally pulls off too much Phosphorus. I am adding a phosphorus solution to my dialysate to try and reduce the amount of phosphorus pulled off.

Thanks
Kamal
http://kamaldshah.com

[RightSide]

Rightside, were you taking any cinacalcet (Sensipar) for your PTH or you achieved the reduction with Zemplar alone?

Thanks
Kamal
http://kamaldshah.com

Oops, somehow I missed your post.  My apologies for replying so late.

I got my reduction in PTH with Zemplar (10 micrograms per session) and a pretty hefty dose of calcium (2,000 mg daily).  I've never taken Sensipar.

[cdwbrooklyn]

I've experienced the same thing.  My PTH was over 1200 but I got in down to 400.  I'm taking Sensipar 60mg and Hectoral (300mg).   I found both meds together works well to keep my PTH down.   However, I stopped taking Sensipar for about a week and my PTH when up to 800.  I am back on Sensipar again.     

[kamalshah20]

Just to summarize the current status:

I have been struggling with severe bone pain for the last 2 months. I have had a very low phosphorus ever since I switched to daily nocturnal. No amount of oral phosphorus supplementation helped. I also tried adding a phosphate enema to the dialysate but stopped after about a week for other reasons. My PTH was very high at one point. I started cinacalcet for this and it came under control. My active Vit D was very low for which I started calcitriol about 2 months back. PTH is now normal (179). My inactive Vit D level is normal.

The bone pain however continues to get worse with every passing day. I am unable to walk properly. Even turning from one side to another on the bed while lying down is painful. The bone pain is in my back, my ribs and my feet. Any strain on any of these areas causes pain. There is no pain if I am just sitting still or lying still. Any movement that causes these areas to get some strain causes pain.

We have done the DEXA scan, several X Rays, an isotope bone scan and even a Serum protein electrophoresis. All of these have been normal or did not show anything other than secondary hyper parathyroidism (isotope bone scan showed this). My nephrologist has no other ideas about what the cause could be.

I am using a low Calcium dialysate and this is due to my Calcium becoming high about 2 years back. My Calcium is currently 7.5 mg/dl pre dialysis and 8.4 mg/dl post dialysis which I realize is lower than what it should be. My nephrologist has suggested switching to a regular Ca dialysate and I am doing that immediately.

Currently the bone pain is my biggest problem and I am really at a loss about what I could do. It is affecting my life in a very negative way as merely going about my daily activities has become difficult. Does anyone have any suggestions on what the problem might be?

Thanks
Kamal

[dwcrawford]

My back has hurt badly for several weeks.  I blamed it on the dialysis chair.  It would get better when I got off and the next days on 3rd hour of treatment get worse again.  All of my lab work is in range except for low protein.
Now my back doesn't feels better on downtimes and next is starting to get stiff.  Is this some dialysis probllems or maybe just old age creeping in (hell, it isn't creep anymore.  its rushing in).  Arthritis or something more serious?

[kamalshah20]

I think I may have hit upon the reason for my bone pain!

Around October 2007, my Calcium went high - about 11.7 mg/dl (normal 8.5 to 10.5 mg/dl). At that point my nephrologist asked me to stop taking Calcitriol and asked me to switch to a low Ca dialysate. The normal dialysate here has 3 meq/l of Calcium. He asked me to switch to one with 2.25 meq/l. I did that. Initially I used to check the label on the Acid can and it was right. I checked the label on the acid can a few minutes back. Guess what - it is only 1.5 meq/l !!! I don't know when they started supplying these extremely low Calcium acid cans! This is far lower than what I had wanted.

I have not been checking the label from many months. I somehow feel that this is the reason for my bone pain. Too much calcium being pulled out from my blood and consequently from the bones. I am ordering a batch of normal Calcium acid cans immediately and will be switching to that from tonight.

I really hope my reasoning is correct!

Thanks
Kamal

http://kamaldshah.com

[Sunny]

I have been following your endeavors to ease your bone pain. I am holding out hope that the calcium levels in your dialysate will be the answer to your problems. Let's hope you found the answer so you can feel well again.

[kamalshah20]

Thanks Sunny for your wishes! Yes, I am hoping too that this is the answer. This pain has been bothering me like hell for the past few months. I really felt I couldn't hold out much longer.

Thanks
Kamal
http://kamaldshah.com

[kamalshah20]

It's been four months since I changed my acid cans to use the regular calcium ones. The bone pains have got worse.

But I have discoved one significant thing. My PTH responds almost instantaneously to a change in my Calcium level in the dialysate. Nothing else is needed. It's all a matter of figuring out the correct calcium level in the acid cans.

I have now started calcitriol 0.25 mcg twice a day and calciriol granules once a week.

The problem is I think we are still shooting in the dark here and no one is sure why the bone pain is there.

Thanks
Kamal 

[RightSide]

Kamal,

When I first started dialysis, my PTH was 1204--and I could barely walk.  Getting into a car meant excruciating pain.

I didn't get rid of my bone pains until I got my PTH in the 100-300 range and kept it there for several months.

The high PTH just sucks the calcium right out of the bones.

[kamalshah20]

Sounds very similar to my pain. I had a few questions in this context.

Does the vit d help to keep the pth down only or is there some other function by which it helps reduce the bone pain. The reason I am asking is my PTH had become very high and then very low as soon as I adjusted the calcium in my dialysate. So though I did have a very high PTH for a while, it has been low for a couple of months now. There has been no reduction in my bone pain. It has in fact become worse.

I am on daily nocturnal and that is why the impact of calcium in my dialyse is very significant because I am exposed to this solution for hours every day.

Can low PTH also cause bone pain? My PTH has been too high or too low and only now have I figured out how to keep it normal - 150 - 300.

Thanks for the help Rightside. I had, honestly given up on the bone pain and thought that I would have to deal with this forever. But after reading your post and the earlier posts you made on this site has given me some hope that there could be a chance that this could be resolved.

Thanks
Kamal

http://kamaldshah.com

[kamalshah20]

I have some good news at last. The bone pain is finally getting significantly better! For the last month or so I have been taking 0.25 mcg of calcitriol twice a day and calcirol granules one sachet every week. I have also increased my phosphorus in the dialysate to get my phosphorus to normal and been taking phosnak, a phosphorus supplement four sachets a day!

With all this, the bone pain is now about half gone. My PTH is around 144 and my phosphorus is at 2.7 mg/dl which is the lower side of normal.

I am hoping the remaining pain will also go with time.

Thanks so much all of you for all the help and advice!

Kamal

[kellyt]

Yeah!      Bone/joint pain is so hard to deal with and it just seems to get worse by the day.  I'm glad you're feeling better.

[Sunny]

I am so glad to know your methods are improving things.Every little bit helps.

[texasstyle]

My sister had a lot of pain like this and is not even on dialysis nor any renal disease. They did find though her Vitamin D was very low. For her, since she started on D supplements she feels soooo much better.I hope what ever is the cause you find it and start feeling better soon. Bone pain itself generally comes from the bone tissue.  Of course we all know how the 2 corallate. Remember there are other reasons too. Arthritis, etc... Hhmm... it's always something isn't it? lol Feel better soon!