Sensipar’s® rocky side effects

Ozzie waddled towards me with a look of mild concern on his face, looked up and said “Poo”. The cat smiles smugly and leaves the room. Julie is wrangling the other four grandkids in the kitchen, helping them cook dinner. Nothing for it. Find a new nappy, wet a face washer (it wishes it was a face washer), a bag to dispose of the evidence and get down to it.

The little joys of being a grandparent.

Like most people associated with little kids, I’m fairly unmoved by poo. Ozzie’s comes from a healthy body, so it’s sometimes messy, but mostly harmless, and water washable. Anyway, anyone who’s been through a transplant or any other major drama that involves ingesting strong drugs knows how thin the veneer is between continence and incontinence (of any variety).

Take this week. After six months of gradually deteriorating Calcium, Phosphate and Parathyroid levels, I re-started Sensipar®. I’ve been to this movie several times before, but such are the delights of the human body, that reactions can vary each time.

What’s different from previous times is that over the years my Parathyroid gland (which was mostly removed seven years ago) has grown back and completely screwed my Calcium/Phosphate balance, to the point where I’ve lost a lot of calcium from my bones.

Sensipar shuts down my parathyroid and my body starts to move calcium from my body back to my bones. To make sure I don’t suffer from calcium withdrawal, I have to take LOTS of calcium tablets. The resulting side effect is industrial strength constipation.

Most people on dialysis are familiar with the constipation spectrum. The sweet spot (so to speak) is at the centre, where a movement is like toothpastesadly, a place rarely visited by BigD-ers. Because we are dialysed fairly dry, most of us live in the zone between pebbles and rocks.

IMG_6132Many mornings after dialysis, when I’m as dry as a chip, things can be a little tough. Passing something the size of my BB-8 robot’s head is challenging but doable. But with the calcium – Sensipar combo, it takes just one sleep to hit the concrete end, where things get harder and bigger, more like BB-8’s body.

After several hours of desperation, pain and trauma, BB-8’s ghostlike, calcium-tinged brother appeared on the scene: relief and exhaustion in equal amounts. More importantly, I realised that I had to avoid a replay of this drama tomorrow at all costs. I. needed chemical assistance in the form of a laxative, and I needed it right now.

IMG_5913After asking around and a couple of false starts, I settled on Benefiber (US) (Aus) – around $9 at Chemist Warehouse). It’s made from wheat dextrin, is gentle on the stomach and it works. I take two teaspoons with breakfast (I mix it with my milk before I pour it on my cereal), and two with dinner (in a small drink of water). It also comes in small sachets (like sugar) so I can use it when I’m eating out without looking like some kind of coke addict.

I won’t need it forever: only until I stop taking heroic amounts of calcium.

But it will stay in the cupboard. There is any number of things we take that cause constipation, from just about everything made codeine and paracetamol, opiate-based drugs, including Oxycodone (also called OxyContin), many anaesthetics and weight-gain supplements like Fortisip and Resource. There are ways around using (or not using) all of these, but Benefiber is a great all-around liberator when we get caught at the wrong end of the spectrum.

Of course, Ozzie is a different matter. Constipated he is not. Maybe I should make sure the Benefiber is out of his reach.

Dialysis: controlling PTH, calcium and phosphate with Sensipar®

I’ve had an annoying excess phosphate/calcium problem for about a year.  I knew it was a problem because I developed a maddening itch, on my arms, chest, legs and back.  It drove me crazy.  And each time I started to scratch it just got worse.  I found it hard to stop, and constant scratching in polite society is a real conversation killer.  Eventually I found ways to minimise it, but now I have just about stopped it at the cause.

Kidneys specialise in more than urine, they also manage the calcium and phosphate mix through the parathyroid glands in your neck (see this post).  Once they leave the building, the calcium and phosphate mix in the bloodstream can go haywire, causing the parathyroid glands to release too much parathyroid hormone (PTH).  This creates a range of problems from itchiness to bone disease, heart disease and abnormal calcium deposits in blood vessels and other parts of the body (including the brain!).

One way to control this is to take phosphate binders (like Caltrate) with each meal.  These binders attach themselves to the phosphate in the meal and then head for the bowel, rather than allowing the phosphate to bind with the calcium in the bloodstream.

In dealing with this problem, my nephrologist first upped the number of Caltrate (calcium) phosphate binders I took, then offered a different type, Alutabs (aluminium hydroxide), made from aluminium.  There has been lots of studies that indicate aluminium is one of the causes of Alzheimer’s Disease, so I politely declined.  Some side effects are better than others, but Alzheimer’s ain’t one of them.

Then we tried Renagel (sevelamer hydrochloride if you prefer), which also didn’t suit.  Side effects vary with each person, and mine were stomach ache and diarrhea, so no.  Finally we settled on Fosrenol® (lanthanum carbonate hydrate) a horse pill-sized chewable tablet I take with meals.  This worked initially, but gradually my PTH jumped again.

This had happened to me before.  Then, the only way to stop the glands was to surgically remove them.  I had 90 percent parathyroidectomy in 2001, but over the next ten years they grew back even stronger (if only kidneys could learn that trick).

Now they can be stopped with a drug.  It’s called Cinacalcet, or Sensipar®.  It lowers PTH by telling my parathyroid glands to stop releasing too much PTH into my blood.  It also lowers calcium and phosphate levels.  I think of it as chemical surgery.  Once you start, the tests and management is the same as surgery.  I started on 30mg per day and daily blood tests to track my PTH, phosphate and calcium levels.

Ideal levels are:

  • PTH:  between 15- 21 pmol/L
  • Corrected calcium:  2.2 – 2.4 mmol/l
  • Phosphate:  1.1 – 1.8 mmol/l.

It took about a week for my PTH level to fall into the ideal range.  Once there I cut back to  30 mg every second day and twice-weekly blood tests.  My calcium and phosphate gradually fell over two weeks.  In fact the calcium fell below the ideal range, so I now take two Caltrate between meals, to boost my blood level calcium.

Sensipar’s most common side effects are dizziness, skin tingling, nausea and vomiting, with the usual undesirables less likely.  Fortunately, so far, touch wood, mine are minimal (and I would like them to stay that way).  Once all is under control and stable, I will go to weekly blood tests.

I have been on Sensipar now for about a month.  Early days, but worth documenting.  I’m looking forward to two main benefits: reduced itchiness (which is happening, I don’t use the creams anymore) and my bones recovering the calcium that has been leached from them over the last year.  I won’t be able to feel that when it happens, but, I have a bone density test coming up next year, and I am expecting good news.

I’ll let you know how things proceed.

Dramas on the Dialysis Days of Our Lives

About 40 people are dialysed in my unit each week.  Like me, they are in a routine: they turn up at their allotted times, have their blood cleaned and leave to resume their life until the next session.  Sometimes for months, things are steady as you go. But dramas are always sitting just under the surface, quietly waiting to change the story.  Some dramas are just part of life; others are the unavoidable result of long term dialysis – of our increased and continued exposure to procedures, meds and risks that are ours alone. So it is inevitable that something will nudge us off our perch some time.

I can attest that my BigD diary has the typical mix of song and dance stories: bugs, unexpected side effects, procedures not quite right, medical ignorance, my ignorance: the list is impressive.

Why write about this now?  It’s been a busy couple of weeks at my unit, with different things happening to several people at the same time.  Things that while  very personal are also common through our community.  It seemed like a good time to not only acknowledge them locally, but also to let BigD-ers everywhere know what to watch out for, and that they are not alone. What kind of dramas?  All were surgical (names not their own).

Removing Parathyroid glands Stuart’s kidneys failed eight years ago and he has been on BigD since then.  In addition to producing urine, kidneys also manage the calcium and phosphate mix through parathyroid glands in your neck (see this post).  Once they fail completely, the calcium and phosphate mix in the bloodstream can go haywire, causing the parathyroid glands to release too much parathyroid hormone (PTH).  This creates a range of problems from itchiness to bone disease, and more.  Despite a range of phosphate binder treatments he’s had very high phosphate and calcium levels for months.  His specialist put him on Sensipar®, but with no effect (more about Sensipar® here). So last Thursday he lined up for surgery to remove most of his Parathyroid glands (a parathyroidectomy).  Like most people, he was nervous, because it involves cutting into his throat, just below the wind pipe to get to the glands.  Many other people in our unit have had this procedure, and apart from worrying that any quick head movement will result in a gaping hole at the base of the throat, all is usually fine.  And so it was with Stuart.

Removing a dead transplant kidney Pam, has been weak, washed out and tired since her transplant of 12 years failed a year ago, despite being on BigD.  She had begun to feel that being weak and listless was normal, but of course it’s not.  Once the kidney stops working, it is a foreign body, and in my opinion it has got to go! Leaving it in place means you have to continue with anti-rejection drugs and their yucky side effects for no good reason. Also, it can get a low grade infection that doesn’t show up on blood tests.  You can ask for it to be removed until you are blue in the face, but the answer is still. “…well, maybe we’ll wait a while longer, until there are indicators…”  Eventually, 12 months later, it became painful and hot, and last week, out it came.  Pam is already feeling more like her old self.  It takes a while to recover fully (it took me nine months), but life will start its return to normal from now on.

Blocked Fistula Two weeks ago Ray’s blood flow speeds started to fall.  The return pressure at the venous (elbow) end of the fistula got higher and higher, indicating some kind of blockage, like a blood clot, aneurism or a kink in his fistula.  It was limiting the speed of the blood pump to a point where he was not being adequately dialysed.  The staff referred him to a vascular surgeon, who arranged for a fistulagram and angioplasty (see here for details) last Tuesday.  The procedure was successful and Ray is now back at the unit, with his blood pumping at the right speed.

Transplant from unrelated donor Lars’ kidneys failed about 6 months ago, and his wife immediately offered him one of hers.  The difficulty was that it was not a great match.  The transplant surgeon still thought it was worth proceeding, but a week later an identical donor-recipient match failed badly, so his transplant was put on hold until the reason for the failure could be identified.  Lars also looked into the option of a paired kidney exchange (where two kidney recipients essentially “swap” incompatible donors with unknown, but compatible recipients). However, just last week they got the go-ahead from the surgeon.  Lars received his wife’s donor kidney and he is now on the rollercoaster that is the transplant journey.  Hopefully we won’t see him again at the unit for many years, if ever. So, it’s been a busy couple of weeks of drama.  With luck and good care, all will be well for all players (and the rest of us) for a while.  I don’t know about you, but I am looking forward to at least a few months of boring (and highly uneventful) routine.

Dialysis: scratch that phosphate itch

I recently discovered that it doesn’t matter how long you have been on the BigD, or when you last read about a healthy kidney diet, you can still fall into food traps that can drive you mad, usually in slow motion.  I thought it would be useful to share.

Over the last month in have received a persistent “Could Do Better” after blood tests:  my Phosphate (phosphorus) was 2.9mmol/L, when acceptable is 0.81 to 1.78mmol/L.  Too much phosphate can be toxic. (more…)

Dialysis, calcium and phosphate binders

IMG_0425

One of the fun things that happen when two or three BigD members gather together for coffee or a meal is the phosphate binder ritual: all hands dip into pockets to find calcium pills, into the mouth, swallow with a sip of water and its back to the conversation.

We all do it, but I know it took me a while to understand why.  Just recently we had an in-house briefing about it at our dialysis unit from the very excellent Cath F, so I thought I’d share what was said.  (The good stuff is hers, any mistakes are mine.)  Thanks Cath. (more…)