AND SO IT BEGINS.
WITNESS A CRIME IN PROGRESS.

http://pduk.org/

Excerpts from the Forum on PDUK:
http://pduk.org/forum/index.php?topic=2425.0

Voices from the PDUK site in the United Kingdom. The British seem to have been the first to face the shortage, starting in mid-2009. The real world-wide shortages start next month.

You are told your disease has no known cause and no known cure.
You are told that sinamet can relieve the symptoms.
The drugs are powerful, brain altering, addictive.
You are told that there is no other treatment; for the past 50 years, levodopa has been the “Gold Standard”; various agonists are added on to the chemical soup in an effort to increase the effects of the L-Dopa and reduce the side effects, which can be as bad as the disease.
You are told that if you suddenly stop taking sinamet (“cold turkey”), it is as bad as withdrawal from cocaine addiction, and you could suffer severe and irreversible damage to your brain and the entire nervous system.
You are told that the drugs may no longer be available to you.
And you are told that stress makes your condition much worse.

AND SO IT BEGINS:
Hazel: …my dad has just started on Sinamet the lowest dose, and now we can’t get it, the chemist did have some of the sinamet plus so he has got them now, I hope we can get them next time, otherwise don’t know what he is going to do.
Radar : My pharmacist has put Sinamet on the order every day, but none has been forthcoming and she is now saying that she thinks that it is not being manufactured, which I find very hard to believe. I will run out of pills on Monday so am going to see my GP about an altenative, although goodness knows this is not the road I want to travel. Any news very welcome.
Skyhigh: It took my pharmacist 16 days last month (to get sinamet) (lucky I had enough spare) I took my latest one in last weds, went to pick it up today and was told its going to be at least another week, I too will run out before then…

Panda: …Last Saturday I spent an hour phoning round different pharmacies trying to get sinamet 62.5mg, I only had two days supply left. I must admit I went into panic zone… While phoning round the pharmacies I was surprised what little knowledge a lot of them have on PD. A few said can you go without meds for a few days?---I soon answered that one!

Panda:… often health care professionals and admin staff do not always realise that PD meds cannot be missed out for a few days.

My pharmacist just can't find sinamet and I am slightly concerned about what might happen when my current supply runs out. Any info very welcome.

Radar: …they were not able to supply Pat's Sinamet. They phoned round and have found another supplier and have ordered a large amount... They did find one box of 100 tabs, but as I have about 2 months supply in reserve, I decided to… leave the box for someone else in town that may be in trouble. ..there are 200 PD patients registered to our local medical centre and I am sure someone else will be on it.
Grizzly Adams:…it would appear that the furore is caused by the change in licence for the manufacture of sinamet. What is coming out is that in the year 2010-11 there will be a considerable shortage around the world in sinamet/+ which could have been averted by better management of the licence to manufacture handover. I read it as the previous manufacturer is carrying on until the last minute before the new licencee or whatever even starts to gear up to production… the new manufacturer says that there will be a priority system for those in most need how do you go about that? Everybody is a priority for such an essential medication. This situation was avoidable it seems. The neupro situation is dire in the states. I have spoken to neupro on a number of occasions and whilst they refuse to say anything about the withdrawal, it would appear that because no major pharma were granted a manufacturing licence [it was manufactured in Canada and imported] the US Govt responded to lobbying of an intense nature and banned the import of the drug [rotigotine]. I am in touch with a woman in South Carolina who tells me she has to pay $580 per box from a pharmacy in Israel. They are only £110 a box to the GP budget in this country. Talk about profiteering from people's misfortunes.
but as for sinamet it could be a rough ride,
Canada has just joined the EU and Australia with a warning about sinamet shortage. This time however it is for the generic......... what is going on? My last prescription for 100/25 was filled but contained rather a lot of partial clips, with bits cut off. Anyone else had delays or difficulty?

I would advise trying to build up a stock by putting your repeat request in a bit early. This has worked for us and we have about 3 months of PD meds in hand, just in case.

Lyn: Hi, I have just tried to get my repeat prescription of asilect and sinamet. My pharmacist has been unable to get the asilect and told me whilst he was having trouble getting the sinamet he was able to get me a months supply this time. Have only a few days supply of asilect left. I feel very vulnerable being so dependant on drugs that are in short supply but feel if we all stockpile them we could make the situation worse.
not sure what to do .
When one thinks about it a shortage of sinamet is fairly unbelievable considering it's a drug which needs taking continuously. I don't really understand the distributor's explanation.
Panda293: Pat has a repeat prescription list for his long list of tablets for many conditions including PD. We always put it in a few days before the next lot is due. Over time one builds up a small stock…
I do agree that is seems odd that such an important drug could be in short supply and I don't understand it either.

Carlyle Travist: My local chemist ran out of Sinamet so in order to meet my prescription they got in some supplies from elsewhere. I notice half the boxes are different from my usual. The dosage and main ingredients appear the same. I can't work out if the manufacturer is different as the distributor appears the same. Could someone tell me please if there has been a general change in manufacture and distribution and if so could this affect us physically in any way?

Carlyle Travist: … my wife tells me she can feel a difference in desired effect from each brand and does prefer one over the other. I have heard (though cannot give you a source) that generic drugs may have a 10% swing in efficacy - this statement from my PD support groups, over the years.

SF: The pharmacist didn't seem to understand my concern. I was carrying a walking stick so I expect she thought my brain had atrophied. However she was polite and gave me some of her time. I have heard that although the drug chemicals are the same, different manufacturers might use different binders etc which some people might be sensitive to.

CT… I had a problem w with the shape and colour of generic ropinirole tablets that made it all too easy to confuse them with Sinamet CR tablets. My pharmacist agreed with me,… she now dispenses Requip despite the prescription stating ropinirole. ..
am just a bit curious we are a country presumably larger in our
PD patient population than the UK yet we have so much Sinamet
and generic "Sinamet" that we almost can give it away for free.
It is also one of the least expensive medications ,when one pays
out of pocket for it costing us, for 90 (10/100 mg )pills about $25.US

The Sinamet CR is still in patent and of course expensive to purchase.

I find this excuse from the Merck company is not quite right just
in my uneducated opinion.

Are you all now expected to have a Carbi-dopa-Leva-dopa "black market"?

Something here stinks of fish and it ain't with the fish mongers.

CT