I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Charlie B53 on September 12, 2014, 06:29:08 PM
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All my bags of PD solution are labeled "Low Calcium"
I am wondering if this is to prevent removing calcium from our system.
My calcium generally runs at the upper limit, and often slightly higher. I also have terrible joint pain which I suspect is calcium crystals forming in my joints, psydo-gout. I'm sure I misspelled that.
Latest labs this week show my calcium at 11, a new record high for me. But I can hardly move. My shoulders, wrists, and knees are very painful, but no swelling, no redness, no outward sign of any problem.
Ortho's last MRI of one shoulder shows massive calcium within the joiont. He didn't say if it was free crystals or simply deposits on the bone that has been worked on.
Waiting on my referral to rhum, have no idea what they can or will do.
But I did send a note to my Neph asking if the calcium in the PD was to prevent removing calcium from the body, and if so, is there a 'No Calcium' formula that may be helpful in reducing my blood calcium? And would this help ease and/or reduce my joint pain?
Anyone here know anything about calcium or have problems with calcium?
I've pretty much given up all milk and cheese to try to reduce my intake, but I'm sure I am still eating veggies containing it.
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Mine were all labeled low calcium too, and I never had a calcium issue. I just thought it was the way they came.
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I suspect that I am the rarity, that my calcium has always run high. Just my system.
I also suspect that the calcium is in the PD solution so as to NOT dialyse calcium from our body.
I may be that rare case that needs to remove some calcium as it is becoming a serious pain issue when crystalized within my joints.
Hopefully I lear back from my Neph early in the week.
It just such pain, hard to do much with shoulders wrists and knees all screaming at you with the slightest movement.
The feentenyal isn't doing it, I see the Pain Dr Oct 6 and I pray he bumps it up a couple of notches as the baby steps he is currently increasing every two months has been a nightmare.
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I thought it was the opposite: that the bags didn't contain very much calcium so they didn't put more into your body.
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Right Deanne. The low calcium solution is 'balanced' for a normal adult so as not to add or remove any calcium from our system.
Nurse told me today there is a high calcium solution for children, designed to add calcium to them as they need additional calcium for growing bones.
Alas, there is no 'no calcium' for someone like me that naturally run too high.
Seems I am in need of a Plan B. When I see Rhum sometime next month hopefully they will have a Plan B.
I was thinking today, there are those that have a natural too high iron. The only treatment for them is to bleed. They donate monthly and that blood loss lowers the iron levels. So I have to wonder if I may end up having a pint, or two, drawn off, and a pint of saline added in. That would instantly lower the calcium levels, then the crystals in my joints would desolve back into solution. Hopefully.
I'm ready to try most anything to stop this constant pain. Traditional narcs just make me feel fuzzy, and do not relieve the pain, just make me not care so much.
I quit using/abusing that stuff L O N G ago. I've been clean except for scripts, valid, since 81, and I won't ever go back there again. There is no future in it.
Tramamdol has worked wonders for years prior to dialysis, the fentenyal helps, a little. It just takes forever to get to a suitable level when starting so small and only small increases every two months. I'm afraid it may be 6 months more pain before that gets to an effeective level.
It just sucks to have to sit and wait while in such pain.
It won't kill me, but sometimes I think it would be better if it did. It least I hope the pain would end then. Won't know till it happens.
I'll just wait.
Take Care,
Charlie B
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Pain Dr called me Fri afternoon, finall got my note I sent days ago. Says a 'no calcium' solution could kill by removing too much calcium.
I asked if bleeding and replacing with salilne was a viable option, he didn't think so but I could take that up with Rhuem when I see them late next month.
So far, no one has had a bad reaction to using fentenyal, that is not the cause of my joint pain, most likely it is my high calcium, again, testing by the Rhuem Dr's should prove what it is.
Since my fentenyal was due for refill/re-write, he would double it this time to 50mcgm/hr. That should make a difference in my percieved pain.
I certainly hope so as I am not moving much as it hurts just too much to do anything.
Anxiously waiting for Pharm to fill and mail the new patches.
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How is your parathyroid? It can raise calcium levels. Hypercalcemia is nasty. my wife used to have it until she started hemodialysis. That seemd to bring it down. Also we add phosphorus in her case as her phosphorus was low and that can cause hypercalcemia. Since we added oral phosphorus her calcium has leveled off at a nice 9.5.
Low magnesium can also cause psuedo gout. How is your magnesium level?
Have you tried prednisone to treat it? It can help a lot.
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Haven't re-tested thyroid in 15 or more years. They did that long ago when they first got excited over my calcium.
I can't, or rather shouldn't take prednisone. The last time I did my legs swelled up like balloons. I gained almost 40 pounds of water. Resting heartrate went up to 96. I wasn't pretty. Walked like the Michelin tire logo, and felt really tired and slow. But no real pain then.
I take a phosphorous binder with meals, when I remember. My number is fine, mid-range. They just want to be sure it doesn't rise much. Potassium is low and I take like 40MG daily.
No idea about magnesium, will have to remember to ask.
There is some disagreement over Vit D. Neph prescribed a daioy, Pain Dr told me even with that daily my D levels were barely detectable and added a once a week large dose. Calcium then was about 10.2 Now at 11, Neph said to stop the weekly large dose and wait to see what happens. Pain Dr says D is essential in handling pain.
All I know is I hurt, and I suspect the calcium is a contributing cause.
Some time this week I get the bigger fentenyal patchs, I'll know if they help within a few hours of putting one on.
Anxiously waiting.
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^
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Also, have you been checked for Sarcoidosis? It can cause hypercalcemia and joint/bone pain.
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Will have to get a copy of my labs, don't know what PTH is, but they tell me my numbers were fine before, and even better since starting the cycler.
Will have to look up sarciodosis, new word to me. Google and I get along very well.
Just after 8 p.m., I'm about an hour behind tonight. Got to get in the bedroom and hook up. Laptop ion there so I can do my homework and learn what sarciodosis is.
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Called PD Nurse and asked about PTH, was told it is very low but not critically low. i read some of the info at DaVita but will need to re-read it as it hasn't sunk in fully. I don't yet understand the full range of cause and effect yet.
Pain patch was increased to 50 from 25 and has made a noticable difference. I can move again, just not too fast. Pain isn't gone by a long shot but it is definitely more bearable now. Still very difficult to squeeze/grasp pliers with either hand, but I am managing to get a couple of things done.
My monthly team meeting will be next week and I will be asking more questions, also have an appt with the VA for labs necessary before referral to Rhuem Dr's. Got to find out if it is calcium crystals growing in my joints and what can be done about it, if anything other than pain meds.
Still losing a little weight. Since starting May last year I've lost 60 pounds of water and a few pounds of fat. Down to 241 this morning after filling with the Ico, so actual weight should be near 237. Been a long time since I've been that light. Give me a couple more years of this and I may see 220 again. I still have all my old jeans that I 'grew' out of!
Finally finished putting the transmission in my old Shovelhead Harley, now just need to get it out and take a ride somewhere, Just nowhere I need to go, yet. I'll find a reason for an errand, town is only 4 miles away but it would still be a ride.
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Took that ride last Thursday, it was good to get in the wind again. That night the left calf blew up, an area of the muscle bulged out and the thing real feels like a whole hornet nest is inside, taking care to take turns stinging so no one gets too tired to stop stinging me. ER Doc said blood clots. Went to the VA Fri morning for ultra sound, they say there is a massive pool of fluid deep within the muscle, may be a Baker's cyst in the knee ruptured and drained down into the calf. Knee does seem to move a little better, but still very painful. Ice, elevation, it should clear up on its own.
Today is Monday, nothing has gotten any better, if anything all affected joints are worse. Knees, hips, thumb/wrist, and shoulders.
Saw the Pain Dr today at the VA, he tells me x-rays of my joints show massive calcium formations, my calcium levels last week and again today are even high, well into the 11.X and headed for 12, oh, and my uric acid has also been rising. Now to the point he wouldn't be surprised if that is also beginning to crystallize in my joints.
Sounds to me like pseudo gout AND gout together. What fun!
Dr stuck me in the butt with a systemic steroid he claims I should notice within a few days. Ordered all the labs required and wrote the referral to Rhuem as the record didn't show that my PCP had done it like she said she would.
So home again, hurry up and wait some more. Not walking very much, even around the house is a major pain, just getting to my feet as a major task. Once up I'm a lot better, as long as I don't move.
Bile is going to have to wait a lot more before I get to take it out again.
But I am NOT sick! This is making me crazy, I should be fine.
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Whate.ver steroid was in that shot in my butt has made a noticable difference in both wrist as early as the very next morning. Hardly any improvement in shoulders, hips, knees, or the left calf. It will be three weeks this afternoon since the calf blew up. It doesn't look any different yet, still has the hard bulge poking right out the side of the major muscle, stings if anything so much as touches it, and sometimes stings just cause it can. Crazy, just outta the blue sitting somewhere it goes off and takes my breathe away for a minute. Gotta laugh cause it wouldn't do any good to cry. But I do have a really stupid laugh when it makes water leak from one eye.
Cycler says it's done so time for me to unplug and go make a cup of coffe, do my numbers.
Take Care all,
Charlie B