Friday, May 14, 2010

To cut a long story short

Have you ever thought about what would happen if you needed a certain type of medication and it just wasn't available anymore? Unfortunately, this is the scenario that I've been dealing with lately. The one and only supplier decided to stop manufacturing without any warning, leaving patients like me with absolutely no equivalent alternative.


I've been without it for a couple of months now, which has led to a further decline in my lung function. After some online research, I finally managed to find some details on a new Australian manufacturer just this week (which my pharmacist and doctors didn't even know about). The drug has not yet been added to the PBS, but I was able to order it in. From the information that I found, it is scheduled to be listed from July 1st 2010.

The good news is that I'm looking forward to being back on track again after my slight hiccup..... and I can finally start to breathe again.

My advice to everyone is to always do your own research. Doctors will never be able to know everything about the latest and the greatest treatments, or the manufacturing plans of the various drug companies, and your health is far too important to just leave it to someone else to manage.

I'm adding some keywords to the bottom of this post just in case someone out there is googling looking for help just as I was Monday night, when I stumbled across just what I needed..... thankyou to the WWW.

Mucomyst alternative
Acetylcysteine Solution
Omegapharm
Mucolytic Agent
Bronchiectasis

27 comments:

PaisleyJade said...

I have actually thought about that in regards to me being stuck without asthma inhalers! So glad you have found something that suits - the www is such a blessing!!!

Nikki said...

That is GREAT news Cam. xxx

m.e (Cathie) said...

you know when we were talking about it tonight, after you'd left I thought to myself, why didn't the dr's advise you. now I know.
glad you found some answers & fingers crossed for you.
night Cam

willow and moo said...

That's fabulous news.

flickettysplits said...

I'm VERY glad to hear this Cam. More power to you. x

willywagtail said...

I'm really sorry to hear how desperate your little hiccup has been. It is great that you have the gumption to google for what you need. I know lots of people who are good with normal net use who wouldn't dream of searching out information. Good on you. Cherrie

Gypsy said...

Thank goodness for the WWW Cam, hope you are starting to feel better (and hope you didn't have to take out a second mortgage for the non-PBS drugs!)

Swirlyarts said...

Glad you have something sorted. Hope you are feeling perky again soon xx

Sarah-Jo said...

How very scary and frustrating and maddening and dangerous!!!

Im so glad you found some medication but I feel furious for you and all those other people suffering at the moment.

im glad you can breath easy now cam, I know all too well what its like to not be able to ive suffered chronic asthma all my life (not the same I know) but its a very scary feeling when your gasping for air and theres no medication to be found

Selina said...

That is such great news Cam! I'm hoping it's not too expensive in the mean time. I have always believed you have to take your health into your own hands, have some control over what's going on. After all, the doctors are not Gods, they can't possibly know everything that's going on!

yardage girl said...

Great news - good on you for being pro-active and yay for the web for being awesome. I'm afraid I lose faith in the medical fraternity regularly - I am amazed at how little they really know at times - especially with kids. I'm so happy for you. Nic

Michelle said...

So glad you found something that works. Hope it gets listed superfast for you. Boo hiss to the drug companies that put profit over people

Kate said...

It seems so unfair that you are feeling so crap and the last thing you probably want to do is research. I'm so pleased to hear that you got some answers though and that you are on the road to feeling better. I hope you have a relaxing and crafty weekend.

Sally said...

Just awful that you have been feeling so sick lately Cam. I'm glad you've found a possible alternative - hope it does its job better than you hope.
Take care. I'm thinking of you.

Cat said...

Good on your for being so resourceful, and thank goodness for the www.
I hope your new medication will make you feel much better, being sick is exhausting business.

Linda said...

what a relief Cam and also a relief it will be on PBS soonish I totally agree with doing your own research in my case so much work and research is done in the USA and it takes quite sometime before Austraian docs seem to know

flowerpress said...

I think being proactive and informed is really great, and there are so many health communities out there sharing real life info :-)
I hope your drug is listed really soon. Good for you for being so brave and resourceful!!

JasperBoy said...

Hi Cam,

Please let me know if there is anything that I can do. I'm not too far away and am quite good at chores and errands (just not craft!!). Happy to walk your pooch too!

Jen in Melbourne x

muralimanohar said...

Yay for google-fu. I understand doctors who roll their eyes at the mention of it, thanks to hypochondriacs and just plain idiocy; but on the other hand, doctors are just as fallible as anyone else, and it's up to US to make sure that we are being done right by. Glad you were able to find what you need. :)

Jennifer Rose said...

I am so glad you managed to find your meds :) it can be such a horrible thing being without something that makes your life better

I try to keep knowledgeable about MS meds just in case something like this happens or if another drug comes on the market that will help me. I am really hoping that some pills get approved so I don't have to keep having injections

Lisa T said...

That is wonderful news and I hope you start to feel better again soon. Lisa T xxx

Melanie Gray Augustin said...

That is really good news! I hope you start feeling much better soon. Sorry that you had to go through this in the first place though!

I agree that it's important to stay on top of things yourself and not just rely on doctors. I've had to do that for my own conditions, especially when I was living in Japan. Doctors are great and a good one is worth their weight in gold, but they aren't omnipresent and so can't be expected to be up to date on everything.

Missymaomao said...

Thank goodness you are proactive about your health.
I imagine that a lot of people would just accept what the doctors say.
I do hope that you feel better soon. All the very best.
Marilyn

Stacey said...

It just seems so wrong that they could cease manufacturing and leave people in the lurch.
Good on you for sorting it out yourself. Not that you should have to.

Tracey said...

Hello chicken,

I am very glad to read that you will be feeling better in the next few weeks.

Best wishes and sunshine sent from Adelaide!

xxx Tracey @ thrift.nest.sew

sophie said...

I cannot even imagine how scary that must have been for you. Good work on taking matters into your own hands!! Hope you're feeling better soon.
xxx

origa-me said...

Hi Cam, two years on from this post and I WAS Googling Mucomyst as I am in hospital with an exacerbation of my bronchiectasis and have just been put on this drug. I was wondering how I would source it later and the cost. Has it lived up to it's promise for you and kept you 'coughing up a lung?'
It has been a long hard road for me with the bronch contracted in childhood but here I am at 66,a crafty type like you, still hanging in despite about three or four hospital admissions a year and enjoying life.
In the words of that 'other Dr Spock' "may you live long and prosper."