haha good one lindy! The bugs could be invisible you know.

paula

Yesterday I called my new order for sinemet in to my pharmacist, observing that the batch that I am coming to the end of was 'not the same' in it's effect. In all truth it was like the difference between a good wine and cheap old plonk, and I have struggled this month with failed doses, extra movements, some earthshaking internal dystonias, and a very down feeling.

That it was the batch of sinemet became obvious when I found an older and differently packed clip and these problems disappeared, only to return when I started using the current batch again.

My pharmacists response to this was that 'we can't get the same stuff as before, it's just not available anywhere, we have to order it now from abroad'.

I am going in on monday to collect the new prescription, and, at her request, to fill in a report.


Lindy

Lindy, were the compared drugs generic, and were they controlled release? If generic, were the manufacturers available?

It might help or, even, convict someone on down the road to post things such as supplier, batch #, dates, etc. You never know what will trip something. Nixon would still be in the Oval Office were it not for a piece of tape.

They are brand name sinemet , MSD, with a UK address but ordered from 'abroad' ?? They seem the real thing from the box, but are not the same...

DRUG WAIT RILES BETH
BY LUCY JOHANNSOHN
27 Apr, 2010 04:00 AM
SHEFFIELD'S Beth Pagel cannot function without essential Parkinson's disease medication Sinemet CR.
There is a global shortage of the drug… Having received the last bottle of tablets from her pharmacy weeks ago, Ms Pagel said she now faced the prospect of searching for an alternative medication to control the debilitating condition.
"Without Sinemet CR I can't move," she said.
"I hate to think what this will mean for hundreds of people with this disease who have been taking this medication for years."…
Bottles of the drug are being sold on online auction sites such as eBay for exorbitant prices….
http://www.theadvocate.com.au/news/l...h/1813123.aspx


March 25,2010 Parkinson’s UK Forum
Shortage !! Not available they told me ..
SO WHAT DO I DO ?

It's all about quotas !!

Today I have received a supply of the elusive Sinemet after chasing, phone calls and worrying... they came just in time.. success due to excellent and helpful pharmicist..
Worrying Times eh !!
http://www.parkinsons.org.uk/pdsforu...-woops-annesel

Posted - 01 Apr 2010 12:47
I have a similar problem with Sinemet 62.5. My chemist couldn't fill all of the prescription...

AnneG
April 3, 2010
I have had trouble this week with the Sinemet 62.5. I decided to take my prescription to Boots this week, because for the last two months the Sinemet Plus tablets that Pete also takes have been manufactured in Spain, I know that they are supposed to be the same, but I found the Spanish ones a tad chalky and the blister pack was extremely difficult to "pop" resulting in the tablets breaking in half. However, Boots had neither the 62.5 or the Sinemet Plus and therefore could not fill the prescription so I went back to my local chemist, but then they were unable to give me any Sinemet 62.5, they managed to source some from another branch, but said that the manufacturers were having difficulty producing these. Don't know what will happen next month.

Global Shortage Of Parkinson’s Drug Shows Vulnerability
(bioasis tech blog)
Jim Edwards on the Pharma Industry blog has a great post on the worldwide shortage of Sinemet, the Parkinson’s drug sold by Merck and Co. While the situation seems temporary, it grimly exposes our under-preparedness for facing major neurological diseases in the future. The lack of cures for neurological disease and our dependence on symptom-relieving drugs shows how we are still lagging behind in solving one of our biggest challenges in the pharma industry today – curing neurological diseases.
Worldwide shortage of Sinemet has patients panicking
Merck and Co. had put out an announcement back in 2009 warning about the shortage without providing any specifics. Now, as the lack of availability is becoming evident across the world, people have been rushing to stock-up on their supplies. While this situation is grim by itself, it exposes one of our major challenges to come in the near future. The impact of neurological diseases 30-4o years down the line is staggering and we don’t seem to be on a path for facing this challenge. According to the Parkinson’s Disease Foundation, about 4 million people around the world suffer from Parkinson’s disease today. With natural aging, increasing lifespans and lack of neurological disease treatments, we can expect this number to accelerate quickly. While our lack of preparedness is already a problem, we definitely cannot afford to face shortages in the available options for neurological diseases today.
…..The situation with Sinemet’s shortage, although temporary, hints to us the potential for a worse situation 20 to 30 years down the line.
Bioasis Technologies Inc.
http://blog.bioasis.ca/?p=2927

This month my prescription was filled with branded sinemet from TWO different countries! Spain and France. They were also not boxed in the usual way, but came in a box the pharmacy supplied. I spoke to my pharmacist again on Tuesday about how my last prescription gave me unwanted effects, and how I was visibly less able to my family, one of whom was with me at the time. We compared tablets from the two, there was a slight almost imperceptible difference in color, but I would agree that certainly with the ones coming in from Spain, they are more fragile and crumbly. They also start dissolving the moment you take them. My experience with last month's supply, which appears to be the same as part of this months, is that they are iffy, sometimes working excellently, sometimes not kicking in at all, but always giving me effects not there with older stock.

A call was made, outlining the problem, and a new batch is on its way, apparently 'made for the UK', and the same as before....?? I believe that this is a tacit admission that there are differences, and that there is some kind of quality control issue. Why else would they offer this.......

What concerns me most is that there does not seem to be a traceable chain of supply, that there is no transparency, in what is regarded as an essential medication.

When I collect the new batch I am going to insist that a report on adverse effects be made. It is not enough to change what I receive - it's about everyone, not just me.

Lindy

Merck Sharp and Dohme temporarily nominates Alliance as sole distributor of Sinemet (UK)
Tue, June 15, 2010
By News team PJ Online (UK)

Merck Sharp and Dohme has temporarily nominated Alliance Healthcare (Distribution) as sole distributor of Sinemet 62.5, Sinemet Plus, Sinemet CR and Half Sinemet CR tablets in order to optimise continuity of supply of these products following significant global supply issues. Sinemet CR is now out of stock and supplies of other strengths of Sinemet are limited.
MSD anticipates that the shortage, which is due to a change in the source of supply, will continue into 2011 and emphasises that pharmacists should only order these products when there is a patient need.
http://www.pjonline.com/news/merck_s...tor_of_sinemet

Comment: Yes Merck, that is profound thinking. “Only when there is a patient need.” Stop handing out Sinemet to people who don’t need it, who don’t have Parkinson’s, who are just walking down the street and have no health problems. That must be what created the shortage - doctors handing out Sinemet completely at random for no reason at all.
And oh, heads up folks! “Sinemet CR is now out of stock and supplies of other strengths of Sinemet are limited.” Aha! What started out as a CR shortage is now spreading! Are we very, very surprised?
And they are hiring Alliance “to optimise continuity of supply”. Hahahaha! There were a lot of bitter complaints about the way Merck was doing the triage - diverting drugs from one country to another… so the suggestion was they had better have the distribution done by someone with a less tarnished reputation, and to cover their behinds if the lawsuits start coming in.


Parkinson’s org. UK: Information for pharmacists and doctors June 2010
…the stock of Sinemet CR 200/50 has now run out. We advise you to contact your GP or neurologist as soon as possible to discuss the alternatives that are available.

Comment: Ah, the stock of CR has now run out. It was a shortage at first, now it has been worked on for six months, so the shortage has gone to non-existent. And here is a PD website repeating refrains that the Parkies had better figure out some alternatives instead of just whining. Invent a new drug, shoot yourself, whatever.
Go ask your neuro to provide with a list of all the other drugs that have been developed to fight Parkinson’s. A lot has changed in the 60 years since levodopa became the “Gold Standard”. For example, there is now Levadopa CR, Levdopa with a tasty touch of Carbo; levodopa in cherry-flavored chewing gum format..

There's no need to panic but the sooner you find an alternative that works for you, the better.

Comment: Yes, don’t panic yet, but heed this warning, Parkie: you had better find an alternative that works for you, even though Pharma has not found an alterative for you in half a century. And note the tone of the warning: You had better do that sooner rather than later, buddy, because Big Pharma is fed up listening to spastics and cripples whine about being given addictive drugs and then having the supply cut off by the curious co-incidence that sinemet production shut down similtaneously in different companies in different countries. Go find yourself an alternative if you don’t like it.

We've been informed by Sinemet manufacturers Merck, Sharp and Dohme (MSD) that they are sending letters to all pharmacies to explain the current situation and outline the alternatives that are available.

Comment: letters sent to pharmacies but not to Parkies, or the PD organisations. Just exactly what are the “alternatives that are available” and if there are such alternatives, why don’t they tell us what they are?
If you have a specialist Parkinson's nurse, they may also be able to help you find an alternative to Sinemet or help you with contacting your local pharmacist or doctor.

Comment: Well now we are talking Direct Action!!! Parkies, get a specialist Parakinson’s nurse (there are millions of them) and have the nurse help you find an alternative to Sinemet! And if that does not work, have the nurse call a doctor.

There, that’s all ye know, and all ye need to know.

http://www.parkinsons.org.uk/about_u..._shortage.aspx

But Google sinemet shortage, and you will see that the number of postal box and black market websites for sinemet has increased from a few to hundreds. The drugs are pouring through the black market around the world.

Apparently everyone in the Parkinson’s Industry, from Pharma to the PD orgs., to government health departments and “corporate bio-ethicists” (who now have their own association) it seems that there is perfect contentment that no explanation has ever been provided to explain any aspect of this international fiasco.

keep a journal. they don't keep insulin from diabetics. i never thought i'd say this but i think someone should consider a class action lawsuit.