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
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!!!
ReplyDeleteThat is GREAT news Cam. xxx
ReplyDeleteyou 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.
ReplyDeleteglad you found some answers & fingers crossed for you.
night Cam
♥
That's fabulous news.
ReplyDeleteI'm VERY glad to hear this Cam. More power to you. x
ReplyDeleteI'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
ReplyDeleteThank 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!)
ReplyDeleteGlad you have something sorted. Hope you are feeling perky again soon xx
ReplyDeleteHow very scary and frustrating and maddening and dangerous!!!
ReplyDeleteIm 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
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!
ReplyDeleteGreat 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
ReplyDeleteSo glad you found something that works. Hope it gets listed superfast for you. Boo hiss to the drug companies that put profit over people
ReplyDeleteIt 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.
ReplyDeleteJust 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.
ReplyDeleteTake care. I'm thinking of you.
Good on your for being so resourceful, and thank goodness for the www.
ReplyDeleteI hope your new medication will make you feel much better, being sick is exhausting business.
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
ReplyDeleteI think being proactive and informed is really great, and there are so many health communities out there sharing real life info :-)
ReplyDeleteI hope your drug is listed really soon. Good for you for being so brave and resourceful!!
Hi Cam,
ReplyDeletePlease 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
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. :)
ReplyDeleteI am so glad you managed to find your meds :) it can be such a horrible thing being without something that makes your life better
ReplyDeleteI 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
That is wonderful news and I hope you start to feel better again soon. Lisa T xxx
ReplyDeleteThat 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!
ReplyDeleteI 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.
Thank goodness you are proactive about your health.
ReplyDeleteI 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
It just seems so wrong that they could cease manufacturing and leave people in the lurch.
ReplyDeleteGood on you for sorting it out yourself. Not that you should have to.
Hello chicken,
ReplyDeleteI 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
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.
ReplyDeletexxx
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?'
ReplyDeleteIt 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."