Tuesday, 24 May 2016

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.

When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.

Sunday, 22 May 2016


The content of this post has been removed, after a check with the Pharmaceutical Goods Administration confirmed that the product is not approved for use.

There are legal implications in anything that could be seen as promoting a non-approved therapeutic product.

Comments have also been removed, and no further comments will be published.

Monday, 16 May 2016

Five Years of Sometimes, it is Lupus

Image three toy polar bears. Text: It's easier to bear, because we're facing it together.

Sometimes, it is Lupus is five years old today.

Yes, five years ago today, I wrote my first, hesitant, post, not knowing if anyone would read it.

I don't know that I expected it to last this long. I don't even know that I expected to last this long myself.

One of the initial reasons I started blogging was to make money, in five years, I've made less than $200.  So that's not funding a big party to celebrate five years in business.

Another reason was to tell people who didn't know about lupus about this disease.  It turns out that almost all my readers actually have lupus or are personally touched by it in some way (a family member or close friend has it.) So actually I'm not telling anyone anything new.

Looking at its original goals, this blog's been an abject failure.

I keep writing, because I've discovered those goals were second best.

I've gained something much better than money, however.  I've gained a community.  The people who read this blog, who make comments, who speak with me on social media, remind me constantly that I'm not facing this rotten disease alone.  Whatever happens to me has happened to someone else, and will happen to yet another person.  We're all in it together. And for me, that's important, because one thing chronic illness is really good at is making me feel alone.

So dear readers, thank you for the five years of ups and downs that we've shared.  Hopefully, we'll have many more years to share as well.

And if you were thinking of a birthday gift?  Can you spare a fiver?  On the right-hand column of this blog, you'll find a couple of organisations that are busy doing lupus research.  Choose one and send them five dollars in honour of five years of this blog. If each of the  4000+ people on the Sometimes, it is Lupus Facebook page sent five dollars to lupus research that would be .... not nearly enough .... better all send ten.

Sunday, 15 May 2016

Tell Me Your Story: Robyn Duffield

Lovely Lupie Robyn Duffield,
with her husband Stephen who
has Parkinson's
A parky and a lupie

We sit and ponder the future
what will it be...
as a parky and a lupie we laugh and cry
as our future is not what we thought it would be

We know we need to exercise
and the lupie is good at that
while the parky would just like the arm to swing
rather than acting like a brat

We both struggle with fatigue and get tired
the parky has a nanna-nap
the lupie crashes early in the night
while the parky moves all night like a flap

The pain we have is different
sometimes we feel like two stones
the parky has stiffness and freezing
the lupie just wishes the body joints don’t moan

There is no cure the doctors state
but together we will cope
as the parky and the lupie
now have a shared single vision to elope

Stress is not good for us
so we are lucky to be together
to help us through the challenges
that we will face every day forever

If you like Robyn's poetry, you can find more (along with her husband's poetry about living with Parkinson's)  here: http://www.parkypoems.invictaprojects.com.au/blog/?p=10

This post was part of the World Lupus Day activities, being held throughout May on Sometimes, it is Lupus.

Saturday, 14 May 2016

Pathology Will Continue to be Bulk Billed

The Don't Kill Bulk Bill petition has
It's amazing what can happen in an election campaign.

The campaign's barely begun, and Prime Minister Malcolm Turnbull has announced that the Government's come to an agreement with pathology providers to allow pathology services to continue to be bulk billed, and no costs passed on to those of us who rely on the services.

The current government clearly didn't want this to become a major election issue.

I watched the announcement with interest, as it came in the middle of the first leaders' debate. The agreement was the pathologists was that the pathologists would absorb the extra cost, and in return the government would act to protect them from unfair rises in rent on pathology collection centres.

It's definitely a win for patients.

The government has said the cuts to the bulk billing incentive would save up to $650 million over four years.

Because of the agreement between the Government and Pathology Australia, the Don't Kill Bulk Bill petition has been closed.

Tuesday, 10 May 2016

Lupus Survey Results - A Picture of Us

Image: orange ribbon. Text: World Lupus Day 10th May
If you filled out the lupus survey, thank you very much.
The results are below - you may find you have to scroll side to side to see everything.
There are some issues with the reliability of the survey - there was only one male respondent, and since ten percent of lupies are men, that's a bit of an under-representation.  Apart from that it was only a sample of 99 people, which is a very small sample, and of course it was self-selected (people chose for themselves to fill it in), rather than a true random sample. Even with all that taken into account, I still think it gives us a good picture of ourselves:
We're of a wide variety of ages, and most of us had a significant time lapse between our first symptoms and our diagnosis.  For a quarter of us that time lapse was ten years or more.  (I'm sure it would be very interesting for someone to research at some time, just what happened in those ten years, and why so many diagnoses took so long.)
In the general population, about 1 in 68 children is diagnosed with an autistic spectrum disorder. Of the 70 lupie parents who responded to the ASD question, 12 had a child or children diagnosed with an ASD.  That is clearly well above the amount that would be expected. This fits with other studies which have indicated that children of mothers with lupus might have an increased risk of autism. Again, those studies are few and science is only at the very beginnings of understanding why this might be the case, but we have borne it out in our own little survey.
The survey looked at another pet issue of mine - people with invisible illnesses being criticised for using disabled parking spaces.  The vast majority of respondents didn't have disabled parking permits.  Of those who did, about half used their permit and never had any problems.  Of the other half, a small number were afraid to use their permits, and a significant number had received criticism.
On the question of the pain experienced by lupies - no-one claimed to be completely pain-free even on a good day.  For most people, pain on a good day ranged from 3 to 5 on a ten scale.  On a bad day, most lupies reported a pain scale from 8 to 10, with no-one having a pain level below four.
The vast majority of us are chronic liars, admitting on the survey that we do lie to family and friends and say we are "fine" when we most certainly are not.  (Only 11 respondents claimed that they did not do so.)
Most of us have gut symptoms.  About half of us have gut symptoms that are affected by gluten, lactose, or both.  A quarter have gut symptoms that aren't affected by either of those. Lactose came off as causing issues for far more people than gluten did, and the majority affected by gluten were also affected by lactose.
Brain fog (cognitive dysfunction) is a problem for all except one of us.  That one person, I salute you.  Most had relatively mild to moderate brain fog problems. About a third were had a more serious issue, regularly forgetting important things or being confused, or even at the point of wondering if they had dementia.
There were no surprises in the question of who diagnosed us.  The vast majority were diagnosed by a rheumatologist with a GP being the next most common doctor to do the diagnosis.
More than half of us took steroids and felt they had caused us to gain weight. About a quarter of us don't take steroids.  Eleven people took steroids but didn't notice an effect on their weight.
As for the impact on everyday life, more than half of us reported that lupus changed everything. Of the rest of us, most said it had a moderate to serious effect. None of us said there was no change.

Summary of responses

Are you female or male?


What is your age range?

Under 2033%
21 to 3099.1%
31 to 402727.3%
41 to 502626.3%
51 to 601919.2%
Over 601515.2%

How long was it between when you first had symptoms and when you were diagnosed?

I don't remember88.1%
less than 1 year1414.1%
1-2 years1414.1%
2-3 years1313.1%
4-5 years1313.1%
6 -7 years66.1%
8 - 9 years66.1%
10 years or more2525.3%

Do you have children diagnosed with Asperger's or another Autism Spectrum Disorder?

I don't have children.2828.6%
I have children, but don't have any diagnosed with an ASD.5859.2%
I have one or more children diagnosed with an ASD.1212.2%

Have you been criticised for using a disabled parking spot?

I don't have a disabled parking permit.8080.8%
I have a permit, but don't use it, because I don't want to be criticised.33%
I have a permit, but don't use it for other reasons.00%
I have a permit, and have been criticised for using it.77.1%
I have a permit and use it, and have never had a problem.99.1%

Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "good" day?


Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "bad" day?


Do you regularly lie to family and friends, and say you are OK or "fine", when you are in pain, fatigued, or suffering other symptoms?


Do you have gut symptoms that are made worse by gluten or lactose?

I have no gut symptoms.1515.2%
I have gut symptoms, but they are not affected by gluten or lactose.2727.3%
I have gut symptoms which are affected by both gluten and lactose.2727.3%
I have gut symptoms that are affected by gluten, but not lactose.88.1%
I have gut symptoms that are affected by lactose, but not gluten.2222.2%

Do you have "brain fog"?

I never get brain fog.11%
I sometimes forget small things.2626.3%
I regularly forget small things.2222.2%
I sometimes forget more important things, and find myself a little confused.2222.2%
I regularly forget more important things and find myself confused.1515.2%
I sometimes worry I might have dementia.1313.1%

Who diagnosed your lupus?

General Practitioner2323.2%
Another specialist99.1%

Have you found steroids (eg prednisone) have caused you to gain weight?

I don't take steroids.2727.3%
I take steroids, but haven't noticed an effect on my weight.1111.1%
I take steroids, and believe they have caused me to gain weight.5454.5%
I have steroids and believe they have made it harder for me to lose weight I already had.77.1%

How has lupus affected your day-to-day life?

No effect at all.00%
Little effect44%
Moderate effect2121.2%
Serious effect.1515.2%
Lupus has changed everything.5959.6%

Number of daily responses

January 10, 20166
January 11, 201628
January 12, 20163
January 14, 20164
February 21, 20162
March 7, 20163
March 8, 20162
March 14, 20161
March 17, 20163
March 31, 20161
April 3, 20161
April 5, 20161
April 6, 20166
April 7, 20162
April 10, 20161
April 11, 20161
April 12, 20161
April 16, 20162
April 17, 20162
April 22, 20162

Tell Me Your Story: Mary Cyr Dacus

Mary Cyr Dacus
Mary here...I was diagnosed in 1995 with Lupus after years of aches and pains, mystery illnesses and countless doctors and as many diagnoses. Included in those diagnoses, hypochondria.

Actually it was my wonderful orthopaedic that suggested that I see a rheumatologist. Back at that time, all books in the library gave a 5 year life expectancy. I had 2 children still at home. My husband was a long haul truck driver, so I was almost a single mom. My parents were 500 miles away.

I had few friends. My only sibling was a brother who was also 500 miles away.

Basically I was on my own with this scary diagnosis.
Fortunately, after I saw my new doctor, I learned I could live a relatively normal life.  He started me on NSAIDS and Plaquenil. Soon I was feeling better.

Since then my husband is now my ex. He couldn't deal with the illness. This is typicsl of most spouses. I have remarried and happier. But the illness has taken up residence in several of my organs. My medication list has increased to an embarrassing total.  I am now living on disability. Medicare and Medicaid are my insurance. My doctors are good. I spend a lot of time with them. But, I guess I must in order to feel human.

I thank God for that orthopaedic that suggested I see a rheumatologist.

Mary Cyr Dacus

Image: gingerbread men with different outfits.  Text: Every story of life with lupus is unique. For World Lupus Day 2016, we're taking the whole month of May to share our stories.

This is post is part of a the World Lupus Day event on Sometimes, it is Lupus.