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Charlie B53
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« on: August 31, 2016, 05:29:40 PM »

Received a note from my Primary Care Doctor

 options for treating osteoporosis in patients on dialysis. The only one mentioned by endocrinology was a medication called denosunab which is an injection given every 6 months. It can impact calcium, magnesium, and phosphate levels so I think you should discuss this with Dr Chaudary before we consider this. It can also impact your chance of complications from dental procedures in the future so any needed dental work should be done before the medication is started. It can also increase pain.

I immmediately asked her to forward this note to Dr C (my Neph) so he may have time to check it out before my next Clinic on the 12th.

I will need to look up this stuff as I've never heard of it yet.  Don't know a thing about it.

My Bone Density wasn't good.   They restarted the Vit D coleceriferol (Sp?)  Last time they tried three different Vit D's, all any of them did was drive my already sky high blood calcium and uric acid high enough they crystalized in most ALLL my joints.  Sensipar daily has finally gotten both down to very reasonable levels.  Well, also something close to fubexo???cin, helps to reduce the uric acid.   Gout/psuedo gout, NO FUN>


But they are telling me my bone density is very low.  I can break easily.    I almost qwapped yesterday.  I tripped and fell trying to move around inside the scaffolding I built for the front porch deck and steps.   Got a HUGE goose egg on the side of my calf.  BURNS like fire.  Iced all night so it is somewhat tolerable now.  As long as I don't touch it.  Or take a forward step much.  It will turn purple in a few days, I'm very sure of that!

Hoping someone already knows what this drug is denosunab which is an injection given every 6 months.
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cassandra
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« Reply #1 on: September 01, 2016, 02:46:16 AM »

Hi Charlie is it Denosumab injections? I don't know of anyone who uses it, but found on the net

National Institutes of HealthU.S. National Library of Medicine

Denosumab Injection
pronounced as (den oh' sue mab)

Denosumab injection (Prolia) is used to treat osteoporosis (a condition in which the bones become thin and weak and break easily) in men and in women who have undergone menopause (''change of life;'' end of menstrual periods), who have an increased risk for fractures (broken bones) or who cannot take or did not respond to other medications for osteoporosis. Denosumab injection (Prolia) is also used to treat bone loss in men with prostate cancer and in women with breast cancer who are receiving certain treatments that increase their risk for fractures. Denosumab injection (Xgeva) is used to reduce fractures from certain types of cancer that began in another part of the body but has spread to the bones. Denosumab injection (Xgeva) is also used in adults and some adolescents to treat giant cell tumor of bone (GCTB; a type of bone tumor) that cannot be treated with surgery or if surgery is not possible. Denosumab injection is in a class of medications called RANK ligand inhibitors. It works by decreasing bone breakdown and increasing bone strength and density (thickness).


Your doctor will tell you to take supplements of calcium and vitamin D while you are being treated with denosumab injection. Take these supplements exactly as directed.

When denosumab injection (Prolia) is used to treat osteoporosis or bone loss, your doctor or pharmacist will give you the manufacturer's patient information sheet (Medication Guide) when you begin treatment with denosumab injection and each time you refill your prescription. Read the information carefully and ask your doctor or pharmacist if you have any questions. You can also visit the Food and Drug Administration (FDA) website (http://www.fda.gov/Drugs/DrugSafety/ucm085729.htm) or the manufacturer's website to obtain the Medication Guide.

What special precautions should I follow?
Before receiving denosumab injection,

Are you allergic to latex?
Be sure to mention any of the following: angiogenesis inhibitors such as bevacizumab (Avastin), everolimus (Afinitor, Zortress), pazopanib (Votrient), sorafenib (Nexavar), or sunitinib (Sutent); cancer chemotherapy medications; medications that suppress the immune system such as azathioprine (Azasan, Imuran), cyclosporine (Gengraf, Neoral, Sandimmune), methotrexate (Trexall), sirolimus (Rapamune), and tacrolimus (Astagraf XL, Prograf); or oral steroids such as dexamethasone, methylprednisolone (Medrol), and prednisone (Rayos). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.

tell your doctor if you have or have ever had a low level of calcium in your blood. Your doctor will probably check the level of calcium in your blood before you begin treatment and will probably tell you not to receive denosumab injection if the level is too low.

tell your doctor if you have or have ever had anemia (condition in which the red blood cells do not bring enough oxygen to all the parts of the body); cancer; any type of infection, especially in your mouth; problems with your mouth, teeth, gums, or dentures; dental or oral surgery (teeth removed, dental implants); any condition that stops your blood from clotting normally; any condition that decreases functioning of your immune system; surgery on your thyroid gland or parathyroid gland (small gland in the neck); surgery to remove part of your small intestine; problems with your stomach or intestine that make it difficult for your body to absorb nutrients; or thyroid or kidney disease.

you should know that denosumab injection may cause osteonecrosis of the jaw (ONJ, a serious condition of the jaw bone), especially if you have dental surgery or treatment while you are receiving this medication. A dentist should examine your teeth and perform any needed treatments, including cleaning or fixing ill-fitted dentures, before you start to receive denosumab injection. Be sure to brush your teeth and clean your mouth properly while you are receiving denosumab injection. Talk to your doctor before having any dental treatments while you are receiving this medication.

What side effects can this medication cause?
Denosumab injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

red, dry, or itchy skin
oozing or crusty blisters on skin
peeling skin
back pain
pain in your arms
muscle or joint pain
nausea
diarrhea
headache
runny nose
sore throat

Some side effects can be serious. If you experience any of these symptoms, call your doctor immediately or get emergency medical treatment:

muscle stiffness, twitching, cramps, or spasms
numbness or tingling in your fingers, toes, or around your mouth
hives
rash
itching
difficulty breathing or swallowing
swelling of the face, throat, tongue, or lips
dizziness
fainting
blurred vision
fever or chills
tiredness
redness, tenderness, swelling or warmth of area of skin
ear drainage or severe pain
frequent or urgent need to urinate
burning feeling when you urinate
pain, numbness, swelling, or drainage from mouth, teeth, or jaw
slow healing of the mouth or jaw
severe abdominal pain
ongoing pain that begins in the stomach area, but may spread to the back
fast heart rate

Denosumab injection may increase the risk that you will break your thigh bone(s) You may feel pain in your hips, groin, or thighs for several weeks or months before the bone(s) break, and you may find that one or both of your thigh bones have broken even though you have not fallen or experienced other trauma. It is unusual for the thigh bone to break in healthy people, but people who have osteoporosis may break this bone even if they do not receive denosumab injection. Denosumab injection may also cause broken bones to heal slowly and may impair bone growth and prevent teeth from coming in properly in children. Talk to your doctor about the risks of receiving denosumab injection.

Denosumab injection may cause other side effects. Call your doctor if you have any unusual problems while receiving this medication.

Brand names
Prolia®
Xgeva®


I found also some articles which I will crosscheck with other medical journals like

Severe Symptomatic Hypocalcemia after Denosumab Administration in an End-Stage Renal Disease Patient on Peritoneal Dialysis with Controlled Secondary Hyperparathyroidism

I will look further into this Charlie, but maybe it is an idea to stop putting your body into situations where you are less likely to injure yourself?
   
     :twocents;

Good luck, love and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #2 on: September 01, 2016, 05:07:38 AM »


I had just Googled the med last night on my desktop machine when my Cycler beeped that it was ready.  So I didn't get past the first paragraph.

Sometimes I hate the English language.  Well, maybe not, it's the only one I know.  But I can hate they way some people mangle it.

"in men and in women who have undergone menopause (''change of life;''"

Men, AND women.  Otherwise it promotes the thought that MEN have undergone a change in life as well as women who have undergone a change in life.

I'll bet there are studies that will prove that the males do go through some form of 'change of life'.  But we 'Guy's' won't ever admit to it!

Looking at all the possible side effects I have to admit that I'm not so sure that I really need to take this so much.  Maybe the Dr needs to show me the bone scan compared to what a more normal persons scan looks like.

Not sure when I'll see my PCP but D Clinic is the 12th.   Hope Neph has better info for me.
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kickingandscreaming
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« Reply #3 on: September 01, 2016, 09:28:56 AM »

I'm notoriously averse to most Big Pharma "miracle drugs," but this one sounds absolutely awful!  I think I would consider more weight-bearing exercise to strengthen the bones before using this.  With my history, there is always a dental procedure in my future. And that would be very problematic.  All those osteoporosis drugs (e.g. Fosamax) do terrible things to jaw bones (avascular necrosis or osteonecrosis of the jaw). If you are a smoker, this is a good reason to quit as smoking exacerbates bone loss.  Also, you have described using prednisone-- notoriously bad for bone density. Your nutrition could probably be upgraded, but you'd need to work with your renal dietition for that.

Quote
Denosumab — Denosumab (brand name: Prolia) is an antibody directed against a factor (RANKL) involved in the formation of cells that break down bone. Denosumab improves bone mineral density and reduces fracture in postmenopausal women with osteoporosis. It is administered as an injection under the skin once every six months. Although denosumab is generally well tolerated, side effects can include skin infections (cellulitis) and eczema. A mild transient lowering of blood calcium levels has also been reported, but this is not usually a problem in patients with good kidney function, who are taking enough calcium and vitamin D.

Because it is a newer drug and there are no long-term safety data, denosumab is usually reserved for patients who are intolerant of or unresponsive to oral and/or intravenous bisphosphonates. Denosumab should not be given to patients with low blood calcium until it is corrected.
http://www.uptodate.com/contents/osteoporosis-prevention-and-treatment-beyond-the-basics
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SutureSelf
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Hey there!

« Reply #4 on: September 01, 2016, 12:08:38 PM »

Received a note from my Primary Care Doctor

 options for treating osteoporosis in patients on dialysis. The only one mentioned by endocrinology was a medication called denosunab which is an injection given every 6 months. It can impact calcium, magnesium, and phosphate levels so I think you should discuss this with Dr Chaudary before we consider this. It can also impact your chance of complications from dental procedures in the future so any needed dental work should be done before the medication is started. It can also increase pain.

I immmediately asked her to forward this note to Dr C (my Neph) so he may have time to check it out before my next Clinic on the 12th.

I will need to look up this stuff as I've never heard of it yet.  Don't know a thing about it.

My Bone Density wasn't good.   They restarted the Vit D coleceriferol (Sp?)  Last time they tried three different Vit D's, all any of them did was drive my already sky high blood calcium and uric acid high enough they crystalized in most ALLL my joints.  Sensipar daily has finally gotten both down to very reasonable levels.  Well, also something close to fubexo???cin, helps to reduce the uric acid.   Gout/psuedo gout, NO FUN>


But they are telling me my bone density is very low.  I can break easily.    I almost qwapped yesterday.  I tripped and fell trying to move around inside the scaffolding I built for the front porch deck and steps.   Got a HUGE goose egg on the side of my calf.  BURNS like fire.  Iced all night so it is somewhat tolerable now.  As long as I don't touch it.  Or take a forward step much.  It will turn purple in a few days, I'm very sure of that!

Hoping someone already knows what this drug is denosunab which is an injection given every 6 months.


What is your PTH - parathyroid hormone?  It is included in your monthly dialysis lab work.  If you don't know - ask.  PTH is important to know because high levels can lead to bone damage.
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
Charlie B53
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« Reply #5 on: September 02, 2016, 05:58:51 AM »


I have to admit that I don't pay enough attention to the actual numbers of my labs.  I let my Team do that.  I am more of the Good, Fair, Poor, type rating.  Far easier to remember than actual numbers.  ALL my labs are right about the very middle of the acceptable ranges.  My Team tells me I am doing very well with the sole exception of needing to increase my potassium intake.  I am taking a potassium suppliment as well.

I don't know the actual PtH value other than I'm told I am well within range.

Historically the only real sign of anything amiss has been my blood calcium which has always ran right at, and above, the accepted max of 10.2    When Dr noticed my Vit D was barely registering and tried three different types of D my blood calcium started rising.  Going as high as 11.7  Somewhere in there the calcium began crystalizing in my joints (What Fun)  Rhuem claims that was uric acid and started a med to reduce that.    Neph increased my Sensipar to daily then doubled the dose.  Finally calcium is under 9 and joints are far better except for the damage already done.  Now just inflammation and no longer allowed to take the anti-inflammatory meds that I have used for 30 some years.

Clinic on the 12th.  I will ask and see what it is and if there has been any trend in its value over the last couple of years.  Thankfully they keep very good records.  Every time I ask a question she just opens the book, flips a couple of pages and shows me the list and it's instantly obvious if and when anything has changed.



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Charlie B53
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« Reply #6 on: September 12, 2016, 10:22:55 PM »

Had Clinic today.  Talked with Neph about a number of things.  pTh is very mid-range.  He told me not to ask for an explaination of how it effects a patient as it can be different and they are always disagreeing on the importance of pTh versus some of the other labs in mortality outcomes. 

People do NOT die from PD.  They die of other complications of kidney failure.  Most often of heart problems.   Nurse has one PD patient already 18 YEARS on the hose.   NOT a problem.

We discussed the known side-effects of the drug my PCP wants me to take for my bone density.   I'm gonna pass.   We talked about how the sensipar has made a huge reduction in my blood calcium.  So much that I can now tolerate a Vit D supplement.    Yea!    I am willing to wait a few months then see if I can also tolerate adding milk and calcium to my diet.  I pretty much dropped them when the gout became such a problem.  Give it a year or two then repeat the bone density and see if any improvement.

I think I have time.  I can wait.






sp mod Cas
« Last Edit: September 13, 2016, 12:06:17 AM by cassandra » Logged
cassandra
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« Reply #7 on: September 13, 2016, 12:03:57 AM »


We discussed the known side-effects of the drug my PCP wants me to take for my bone density.   I'm gonna pass



    :2thumbsup;


Love, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #8 on: September 13, 2016, 06:42:43 AM »

We discussed the known side-effects of the drug my PCP wants me to take for my bone density.   I'm gonna pass.   We talked about how the sensipar has made a huge reduction in my blood calcium.  So much that I can now tolerate a Vit D supplement.    Yea!    I am willing to wait a few months then see if I can also tolerate adding milk and calcium to my diet.  I pretty much dropped them when the gout became such a problem.  Give it a year or two then repeat the bone density and see if any improvement.

I think I have time.  I can wait.


sp mod Cas

Good luck Charlie and all the best wishes from Kristina.  :grouphug;
P.S. ... Sometimes it really pays to see and wait for a little while ...
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SutureSelf
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Hey there!

« Reply #9 on: September 13, 2016, 11:12:57 AM »


...  pTh is very mid-range.  He told me not to ask for an explaination of how it effects a patient as it can be different and they are always disagreeing on the importance of pTh versus some of the other labs in mortality outcomes


Glad your PTH is somewhere in the mid-range (even though you don't know what that is) and for dialysis patients it can be 4-7 times the range of those who have working kidneys.  Your neph is correct, PTH is not necessarily an important indicator of MORTALITY.  However, it is a major indicator of MORBIDITY or more simply, a quality of life issue.  Too high PTH coupled with high Phosphorus and low calcium can cause bone weakening and pain. 

This from world renown nephrologist, John Agar, MD, from Homedialysis.com:

PTH - How To Find The Right Balance?

Calcium, phosphate and PTH control and balance is, I think, the most difficult biochemical area for any dialysis patient ... and for their physician! It is also the area we seem to have most trouble with and know the least about. There are a variety of opinions (and a significant pile of conflicting evidence too) about what exactly IS the right thing to do and the right balance to strike. One of the problems is that the blood tests that measure all this stuff are poor mirrors to the target organ = bone.

While the best way to understand and target bone-modifying therapy is almost certainly via bone-monitoring with serial bone biopsies, have you ever had a bone biopsy? Probably not! Most dialysis patients haven’t ... and won't. Why? ... well, I can think of few tests less pleasant to have and as most who have had one biopsy politely reuse another, serial studies to gather the kind of data we really need to know if we are to be certain of exactly what the hell we are doing, are just not there.

So ... we test secondary markers like Ca++ (total adjusted or ionized - and there are supporters of and arguments for both), PTH (and again there are those who support and argue the merits of the various ways to do this: intact molecule, mid-molecule, n-terminal, c-terminal etc), phosphate and alkaline phosphatase (bone-originating as opposed to liver-generated) ... and at the end of the day, try to make sense of it all!

Normal bone renews itself constantly through a process of bone re(ab)sorption and new bone production.

Bone resorption is dependent on cells at the growth edge of bone called osteoclasts ... I imagine them as like little Pac-Men that nibble away at old 'dead' bone and, in the process, liberate bone calcium into the circulation.

On the other hand, new bone growth is orchestrated by a different population of cells - cells that make new bone - called osteoblasts, which lay down new healthy layers of fresh bone to replace that which has been resorbed.

Healthy bone requires a balance between these two factors. This balance of removal and renewal is known as 'bone turnover'. New for old. New for old.

In the broadest of terms, over-active bone with high turnover is seen at high levels of PTH ... where it's all going too fast. If you like, it's like bone destruction and production in fast forward, the new bone being destroyed almost as fast as it can be made and with little time for any strength and solidity to result from the production of mature bone. PTH drives this frenetic process and the higher the PTH, the more frenetic is the turnover and the less stable mature bone gets formed and stablised. We call that state hyperparathyroidism - where high levels of PTH are resulting in lots of hyperactive but immature and 'soft' bone.

At the other end of the spectrum of bone function is bone that has stopped turning over at all ... a state called adynamic bone - or adynamic bone disease, though it is not truly a 'disease' but rather a 'state'. This is where there is little or no PTH production and all bone metabolism kind of grinds to a halt. Here, there is lots of old and rather brittle but essentially 'dead' bone, doing nothing much at all.

At both ends of this spectrum, bone is 'unwell' ... it is either brittle and breakable, or soft, bendable and painful.

Somewhere in the middle is nice ... the sweet spot, where there is not too much PTH, but enough ... not too much turnover, but enough.

The best way to assess the 'state' of bone is under the microscope ... but I have been there already, haven't I, when I talked about bone biopsy ... and most patients won't have a bar of it. Nor do I blame them, tough the lack of bone studies hampers our real understanding of this most difficult or areas.

So, instead, we use blood levels of calcium and PTH and more 'researchy stuff' like osteopontin and other more esoteric bone enzymes and receptors ... but these are simply NOT GOOD MARKERS. They are very blunt tools indeed.

Even more importantly ... and perhaps in the context of your question, most importantly of all ... there is a significant issue with 'lag time'.

Bone, like Rome, is not built in a day, but blood calcium, and PTH levels etc. can change rapidly. This means that as the things we are measure in the blood (Ca++, PTH, PO4) and that we are using to try and interpret what is happening in the bones may be changing quite quickly in one direction, the bone itself (the bit that matters) may still going tortoise-like in the opposite direction. We use medication (or dialysis) to change the Ca++ level or the PTH, and zam ... the blood levels turn around and head in the opposite direction. Meanwhile, the bone itself, like the Titanic, keeps on and on, for ages in the opposite direction till it finally turns round. But, by this time, we may have changed the medication yet again ... always trying to head back towards the middle ground.

To make matters more difficult still, bone itself becomes less 'responsive' to (or, if you like, more resistant to) any given level of PTH as kidney function falls and/or a patient starts on dialysis. Further - and as a rule - the longer the period of renal dysfunction has been, the less responsive the bone becomes. This results in a higher 'level' of PTH being needed to get the same amount of 'kick' out of the bone. This is why you will often hear of levels of 2-3 times normal being 'the ideal target level' in advanced CKD or dialysis patients ... they simply need more PTH to get the same bone bang for its buck ... but ... and it gets even messier here ... even 2-3 times the 'normal' level of PTH may be insufficient in some patients. The 'normal' PTH for any given patient (= that level of PTH at which a normal bone response occurs) may be up to 4, 5, 6 or even 7 times the upper limits of the laboratory normal. And the problem is, no-one can really tell ... not you, not us.

As you can see, it really gets hard to know what the hell we should do for any given patient ... short of serial bone samples ... and there aren’t many who will permit that!

Because of all this - and magnified by the 'lag time' problem - we are often left chasing our tails up and down the slippery slope from adynamia to over-activity and back, adding and subtracting medication as we always try to head back towards the mid-point ... though even that mid-point is a moving feast and may change with dialysis vintage = time (years) on dialysis.

As for treatment, cinacalcet turns down bone activity by switching off PTH production ... it will slide you towards adynamia ... as does calcitriol, while a high phosphate will push the PTH higher as it binds calcium as calcium phosphate, lowers the calcium level and promotes PTH production.

Oh, Kamal, it is so very complicated ... and to get it right is often more by good luck than smart management!

Patients (and doctors) get so (a) confused and (b) upset that it is natural to ask the question: "hey, does the doctor know what he's doing" ... as the medications chase their tails up and down the seesaw.

That chase is as much to do with the lag time problem as anything, and ... as blood changes rapidly and bone is bone and take ages to reverse (in either direction), I can't see the confusion lessening any time soon.

The best I can say is ...

Don’t give up the battle.

Don't be put off by the back and forth chase - it will always be that way, by the very nature of the disconnect between the speed of the changes in blood and the tortoise-like speed of change that governs bone metabolism.

I am not sure if that answers your question, but I hope it makes it a bit clearer.


http://forums.homedialysis.org/threads/3572-PTH-how-do-I-find-the-right-balance
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
Charlie B53
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« Reply #10 on: September 14, 2016, 07:57:09 AM »


WOW.   This must be a big part of why my Dr said there is a lot of controversy over pTh levels.

Historically my blood calcium has always ran at, or slightly over the 10.2 lab indicated maximum.  It has been this way for as long as I remember, way longer than before my kidneys ever dropped even under 60%

Daily sensipar has lowered that just under 9.   Two years ago it started climbing, to a max of 11.7   During this time pTh remained stable, still at it's current middle of the range, whatever that is.

I think I'll pass on the bone biopsy.   No fun taking a bite out of bone.    I will copy this link and send it on to my Nurse.

You do have a reserve of GREAT information.   We are very fortunate to have you for a resource.   Finding information can be very tough when you don't have a clue what to ask, or how to ask the right questions.

Thanks,

Charlie B53
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Charlie B53
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« Reply #11 on: September 15, 2016, 07:48:26 AM »


Nurse Kim called with Mondays labs.

Caluim remains at 9.1  one of my lowest in a great number of years.  Last month started me on one of the Vitimin D's and calcium remains the dame.  So Dr decided to add a second typr of D.  They have ordered it, I won't have it for almost a week.  And they also want to redo my labs.

pTh has risen.  My historical range of around 336 has risen to 575

Phos has also gone up enough Dr wants me to start taking my binder with every meal, no longer only with high phos meals.   I will have to start remembering as I haven't taken any pills near meals for a long time.
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KatieV
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« Reply #12 on: September 15, 2016, 01:40:21 PM »


pTh has risen.  My historical range of around 336 has risen to 575


I'd be thrilled with a pTh of 575 - mine is currently 2500!   :o
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Charlie B53
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« Reply #13 on: September 15, 2016, 07:18:14 PM »


No words.    I have no concept of any value being that high!

I'm only a few years into this and still know next to nothing compared to some of the people in here.

My Nurses tell me I shouldn't worry about anything.  That with my labs as stable as they have been for the three years now that I should be fine for a very long time barring any unforeseen infection.
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Rerun
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Going through life tied to a chair!

« Reply #14 on: September 30, 2016, 01:50:04 PM »

I love this site because I search "Prolia" and up pops this thread / topic.   :bow;

Around Sept 18th I was in bed and reached for the remote on my night stand.  I heard a pop and pain under my right breast (oh Joy).  I think I've cracked a rib only now I hear crunching so I think I've broken it.  I didn't go get it checked out because they can't do anything about it.  My lungs are clear as I have told the nurse at dialysis about this accident if you can call it that.

So, I told my Doctor's PT when she came in last night and she said they have several patients on "Prolia", an injection every 6 months.  It would rebuild my bones or help them.  I mean if they are just going to start snapping I'd better do something.

I remember Epoman was in a wheel chair because both his hips snapped.  He then... was a believer in taking your binders.

I'm going on 30 years with renal replacement, either dialysis or transplant and I'm only 55 but this is hard on bones.  There use to be nothing they can do.  Now there is.  I need to ask my PCP about it I guess.

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Charlie B53
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« Reply #15 on: October 01, 2016, 06:28:29 PM »


I am a smoker, with that morning productive cough needed to clear the qwap up out of my lungs.

TWICE in my life I've had some sort of deep chest cold and coughed soo hard, I broke a lower rib.  I about colapsed on the floor  from the pain.  Every breath for weeks hurt.   My usuall morning cough felt like I was gonna die.   I don't remember how long it was, but believe me, it was far too long, before I could cough without pain.

I do NOT look forward to it happening agin, but realistically, I know it is just a matter of time.

Once upon a time Dr's would tape or band a chest to help hold the rib together.  They quit that as far too many people couldn't breath deep enough, air would go stagnant in the lower lobes of the lungs and they were mosre suseptable to pneumonia, get sick and some die.  So they now just leave us alone to suffer with the pain until the rib adheres.

That sucks.

I know the pain you are in.

When I had my heart by-pass Ladies Group made coughing pillows and donated them.  I still have mine.   Keep a pillow within immediate reach, when you feel a cough or worse a sneeze, grab that sucker and hug it T.I.T. Tight.   It really helps.

Take Care
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SutureSelf
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Hey there!

« Reply #16 on: October 01, 2016, 08:35:20 PM »


I am a smoker...

When I had my heart by-pass...


You've had bypass surgery and still continue to smoke?  Nice.
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
Charlie B53
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« Reply #17 on: October 02, 2016, 07:33:41 AM »


Old habits die hard.     It was far easier to stop using drugs and alcohol than quit nicotine.

What really messes with my head is I've never been a quitter.   I have always managed to do anything I set my mind to. Yet when it comes to stopping this I get all jittery, anxious, cranky, and after anywhere from a few hours or even a whole day I light one up and calm down.

I'm screwed up.    No doubt about that.

Chantex did make a huge difference for me.   I actually quit for a whole year.   I still don't understand why I started again.   Dr won't let me have Chantix again, stating it is not recommended for renal patients as it may cause some kidney damage.

So?     My kidneys are screwed already.   
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Rerun
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Going through life tied to a chair!

« Reply #18 on: September 12, 2017, 08:19:45 AM »

I started down this path a year ago.  Today I finally get my Prolia shot.  I had to get my vitamin D3 up to a certain level and my Calcium also had to be up because I guess this drug starts packing calcium into my bones.  I will keep you posted on how this drug works for me.

Beginning with .... if the shot hurts!   :waving; 
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Jean
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« Reply #19 on: September 12, 2017, 10:00:50 AM »

 One of my many foolish questions. Are bones ( I am talking really good ones ) transferable? Or transplantable??
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One day at a time, thats all I can do.
Charlie B53
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« Reply #20 on: September 13, 2017, 03:36:39 AM »


Individual bones are not normally transplanted.  However there are exceptions to most every rule.

There have been successful transplants of limbs, i.e. a hand or arm, which included the bones inside.

I do not know of any other as yet.
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GA_DAWG
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« Reply #21 on: September 13, 2017, 07:04:27 PM »

Don't know if it helps, but the pharmacist advised me to use the patch and to use each stage twice as long as recommended because of how long I had smoked. It worked for me, and I had tried many times before.
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Rerun
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Going through life tied to a chair!

« Reply #22 on: September 14, 2017, 03:52:49 PM »

Prolia is not for "smoking".  It is to help make your bones stronger.  Assuming you have osteoporosis. 

Shot did not hurt.  It is about $1,500 a shot.  I hope Medicare will cover their part.  Then I have a secondary.
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GA_DAWG
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« Reply #23 on: September 14, 2017, 09:33:57 PM »

Did not mean to confuse anyone, but there also were posts where people referred to failing at quitting smoking.
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