I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kamalshah20 on November 11, 2009, 09:36:15 PM
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For about a month now, I have been having pain in my bones - mainly in my ribs, my back and my feet. When I sit for a little while and then get up, my walking is a little painful. The pain is not unbearable but it is uncomfortable.
I have had a high PTH for a few months now and have been on cinacalcet. We're still trying to arrive at a 'correct' dose. My PTH is around 640 now. I have also had a low Phosphorus since I've started nocturnal.
I saw my neph a couple of days back and he suspects that the Vitamin D levels are off. I used to take Alpha D3 capsules before I got onto nocturnal.
I was wondering if anyone has any idea about this and if Vit D levels could be linked to bone pain.
Thanks
Kamal
http://kamaldshah.com
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Pain everywhere. When my Pth and Vit D levels were out I had pains in my wrist similar to carpell tunnel and i had lots of bone pain. I am on 60 Sensipar per day and 2x rocaltrol (vit D) per day. It has lowered my pth to reasonable levels and the pains have stopped. the only other time i sometimes get pain is when i take my aranesp (only rarely)
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Have you seen a bone specialist yet? May want to get a ful body bone density scan (Dex Scan I think it's called, I forgot since it has been over a years since I had mine). I was put on Zemplar at first and prescription dose of Vitamin D along with Calcium plus Vit D. Now on Actonel, Calcium with Vit D, and Vitamin D over the counter pills once a day.
You may want to ask for more help in the bone area, it will help your pain and bones.
Good Luck
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I was wondering the same thing. I've having a lot of pain in my hands, mainly my knuckles. My PTH is also very high and I also take Zemplar and vitamin D.
I was thinking it was arthritis but do you think it could be from the kidney disease?
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Thanks all for your replies. I think I will get my Vit D levels checked and then, if necessary, start a Vit D supplement.
Thanks
Kamal
http://kamaldshah.com
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Kamal,
Best see if you can receive the Vitamin D, such as Hectoral, Zemplar or Calcijex by injection (into the blood tubing while on dialysis). These forms tend to be more effective that oral doses.
8)
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Sure Zach. Will remember to check with the neph about this!
Thanks
Kamal
http://kamaldshah.com
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i thought the bone pain was just getting old.
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It's most likely high PTH.
When my PTH was 1204, my skin felt like it was getting static electric shocks all over.
You need to knock down that PTH by either vitamin D3 or (if that fails) by cinacalcet.
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Oops, I forgot to mention:
When my PTH was 1204, it was sucking the calcium right out of my bones. I could barely walk, I collapsed a couple of times, and I hurt so much I had trouble climbing stairs or getting in a car.
It's not enough to knock down the PTH. Calcium supplements and vitamin D will help remineralize your bones.
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That is scary Rightside. Glad you are doing better now. Thank yoi for the info. :)
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Thanks for the info!
Kamal
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My Vitamin D level result has arrived. It is 3. The normal is supposed to be above 19. So, it is really low. I am beginning to panic now. I am seeing my neph tomorrow with this report.
What do you take when your level is so low?
Kamal
http://kamaldshah.com
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For those who are taking Vit D for the bone pain, how much time does it take for the bone pain to reduce after you start taking the Vit D supplement.
Thanks
Kamal
http://kamaldshah.com
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When Pth is too high, the bone turnover rate is too high, which could result in bone pain or broken bones. As Zack said, active Vitamin D, such as Hectoral or Zemplar, is needed. Active Vitamin D is a lot more expensive than the regular Vitamin D. Actually, they are one of most expensive drugs. But we need them. The target level of PTH is 150-300 for dialysis patients.
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I mentioned in an other post that I take Zemplar too. I always ask my neph for samples because it is so expensive.
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Apart from the reduced hypercalcemia, are there other benefits to taking Zemplar over Calcitriol? How is Hectoral different?
Thanks
Kamal
http://kamaldshah.com
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My Vitamin D level result has arrived. It is 3. The normal is supposed to be above 19. So, it is really low. I am beginning to panic now. I am seeing my neph tomorrow with this report.
What do you take when your level is so low?
when I started dialysis,
My vitamin D level was severely low too (though not quite as low as yours).
So my neph put me on TWO different forms of Vitamin D:
Zemplar (cholecalciferol): Activated vitamin D3, 10 micrograms each dialysis session
Ergocalciferol: Vitamin D2, 50,000 units once a week orally
That's a hefty dose of vitamin D!!!
A while back, I posted some info on why we might benefit from taking BOTH vitamin D2 and vitamin D3. This is still an area of ongoing research, however.
My neph feels I've had enough heavy D2 by now, so he's just ended my prescription D2 and he told me to just buy D2 over the counter. Unfortunately, it's not over every counter. ;D I have to order D2 over the Internet.
Be patient. With plenty of vitamin D, and plenty of calcium, you're going to feel great.
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Oops, made a mistake there.
Zemplar is paricalcitol, not cholecalciferol.
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For those who are taking Vit D for the bone pain, how much time does it take for the bone pain to reduce after you start taking the Vit D supplement.
I was on a heavy dose of Zemplar (10 micrograms each dialysis session), and I was chewing up SEVEN Extra-Strength Tums a day, giving me 2,000 mg calcium daily.
On that regimen, it took me about 4 months before I started noticing that the bone pains were getting a little better, and that I was walking easier. I could chart the decline in my PTH over time with Microsoft Excel.
But it took another couple of months before the bone pains ceased completely. And my PTH has gone back into the normal range (normal for us ESRD folks, that is)--and remained there ever since.
Mission Accomplished.
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Rightside, were you taking any cinacalcet (Sensipar) for your PTH or you achieved the reduction with Zemplar alone?
Thanks
Kamal
http://kamaldshah.com
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I have turned out to be allergic to Zemplar. It makes me itch like crazy!
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Rightside, were you taking any cinacalcet (Sensipar) for your PTH or you achieved the reduction with Zemplar alone?
I don't know about RightSide, but I need both Zemplar and Sensipar to keep my PTH in the normal range.
8)
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I am also taking both now Zach. I have a very uncomfortable pain in my feet, ribs and back. My neph says it is due to the low Vit D. I'm hoping this will help resolve this pain.
Thanks
Kamal
http://kamaldshah.com
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I am so glad you have taken an active approach in your bone pain issues. You are saving yourself from developing renal osteoporosis and using a walker, wheelchair, taking numerous pain medications and getting bone fractures easily. Keep up the good work and be involved in your health issues. I don't know you but I am very proud! :clap;
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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
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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
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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
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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.)
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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
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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.
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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. :)
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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
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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?
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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
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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.
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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
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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
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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.
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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
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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
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Yeah! :yahoo; 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.
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I am so glad to know your methods are improving things.Every little bit helps.
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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!