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.

5 thoughts on “Sensipar’s® rocky side effects

  1. Hi
    Thanks for this and yes, Benefiber is a great product and can bring a powder be mixed with just anything. Also it brings your cholesterol down.
    One question that many will make wonder is how do you manage to get Sensipar. After it was withdrawn from the Australian market there are only 2 options left : pay it yourself for around 800 $ per month, or your nephrologist needs to make a compassionate need declaration to the Pharma company that rarely ever succeeds.
    Good luck with your great blog.

    Dr Johan Rosman
    Nephrologist
    Perth

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    • Hi Johan, great to hear from you! Yes, it is a problem. I’m not up to more surgery at present, so I’ve put my hand in my pocket. Each script costs $230 at my local dialysis unit chemist, and fortunately, my health fund (Navy Health) refunds $120, with a limit of $500 per annum. Regards, Greg

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  2. I second the benefits of benefiber – it’s the ‘nicest’ product I’ve come across for constipation, particularly after surgery.
    I also was wondering how you got access to Sensipar. It’s criminal that they took it off the PBS.
    I had a parathyroidectomy 13 years ago, however started sensipar about 5 years ago.
    My phosphate/calcium control was terrific on sensipar before they took it off the PBS. I’m relatively young (35) and first went on dialysis 23 years ago. I take serum calcium/phosphate very seriously as I know how it will impact my long term prognosis.
    I’ve just had to have a second parathyroidectomy where they had to remove most of my thyroid because the 4th gland was inside it which is why they couldn’t find it first time. The surgeon himself said it was more difficult/risky than expected because of all the scar tissue.
    Apparently the costs / risks of that surgery, me having to a week in hospital and 4 weeks off work (I still can’t talk properly and have a lot of swellling), inflicting people with yet another general anaesthetic are all less than the costs of a drug which they funded 12 months ago.
    I am entirely dissatisfied with the situation.
    Maybe if I hadn’t already had a parathyroidectomy and it was routine, but when you’ve already had one and the risks of complications are much higher, it should be taken into account.

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    • Hello Peter, you wondered why the Sensipar is no longer on the PBS. as a nephrologist I can tell you why.
      We used to love the drug, as it suppressed the PTH, and where we had to do many parathyroidectomies in the past, which is, as you know, a very uncomfortable and tricky surgery, the need for this type of surgery drastically reduced.
      Then there was an American study that showed that Sensipar lowers the PTH, decreased the need for surgery, but looking over their large number there was not a patient who lived a day longer because of the drug. Survival was the primary outcome of the study.
      I have a big problem with the interpretation of the results. Completely apart from the duration of life, there is something more important and that is how you spend your life, in what quality of life, and high PTH leads to brittle bones, fractures, itch etc etc. Sensipar kept this under control without surgery, independent of how long you lived, it was in good quality.
      Because of the lack of longer survival, the PBS struck the Sensipar off the list. As a nephrology society we have done everything possible to keep it, but we all know how politicians and penpushers at state healthorganisations, and federally the PBS work… Regretfully we have reverted to doing a large number of parathyroidectomies with all its consequences.
      This is the story of an excellent drug that was halted because of a misinterpreted study, that only looked at the length of life.
      We keep battling on and hope to get it back on the list, worse case we will get it cheap once the patent expires.

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