Amantadine

About Parkinson's and health Treatments and therapies
21

Hi redpoppy,

And thanks,

However, I have since talked to friends who suggested that media output could cause panic in some people. I hadn't thought of that.

Now,I'm not so sure?

Equa

 

22

Hi,

Any update on the availability of Amantadine?  My father has been on reduced amounts for nearly a month and it is severely affecting his health.  The doctors keep telling us he needs Amantadine but we've had no update from the pharmacists (Blackpool area).

Thanks

 

23

Hi Asanta,

We are currently in the process of decisiding whether tyo put soemthign official on the news section of the website so watch this space.

We also got this update from the manufacturer on Monday: 

Dear Sir/Madam
Re: Supply Situation - Symmetrel® (amantadine hydrochloride)
Symmetrel® capsules 100 mg
A limited amount of stock is available and being managed by the wholesalers to ensure, as much as possible, that patient’s needs are met. We expect to resume normal supply at the end of July.
 
Symmetrel® syrup 50 mg/5ml
We are, unfortunately, out of stock of Symmetrel® syrup 50 mg/5ml due to increased demand as a result of a manufacturing delay with Symmetrel capsules 100mg. We are working closely with the manufacturers to resolve this situation as quickly as possible and anticipate stock being available again late in September
We are currently exploring all other opportunities to maintain supplies in the interim period.
 
Please be assured that we understand how important Symmetrel is for many patients.
 
If you have any questions, please do not hesitate to contact us.
Yours faithfully
Medical Information Team

 

Alliance Pharmaceuticals Limited
24

Thank you, I will show this to our pharmacy and hopefully they can access some of the 100 mg capsules as soon as possible.  Fingers crossed for the supply to be sorted as soon as possible.

25

My Mum (in Burnley, Lancashire) ran out of Amantadine two weeks ago and had to go 'cold turkey'. Her condition has deteriorated dramatically in those two weeks. Her Doctors  http://www.rosegrovesurgery.co.uk/ and local Pharmacy (Bailey & Garrett, part of Numark ​http://www.numarkpharmacists.co.uk/) have told her they have made every effort to get some, but failed, that the factory has now burned down and it won't be available for months.

When she told me 10 days ago that the drug was off the market and the doctor and pharmacy were not getting a substitute, I thought this drug must be insignificant in her treatment. Now I have seen her on Skype I know that's not true. She struggles to open and close doors, can't peel potatoes, water her beloved plants, can't go out of the house etc. This is very serious for her and she might fall, which could be disastrous.

I am on the verge of ordering generic drugs over the internet. 

Is there a drawback to this? Like could the drugs be seized by customs? 

Or is there a way I can get the NHS to supply a generic, like they obviously should have done straight away? Reading this forum convinces me that the manufacturer are not addressing the issue, so someone has to.

Incidentally, I live in New Zealand, which makes it harder to be directly involved.

26

Hi Harry

I'm so sorry to hear about the deterioration in your mother's condition.

As you can see from Leowatson's post a couple of days ago, this is the situation as we know it regarding the drug. The manufacturer, Alliance, have given assurances that it is not discontinued and that there are just issues with the wholesalers.

There does not seem to be any other manufacturer of the product apart from Alliance as it is not a widely used medication, so generics are not an alternative… although it is out of patent.

We would not recommend the purchase of drugs via the internet as it is often not possible to guarantee the provenance and source of the end product.

We would suggest your mother tries as many different pharmacies as possible and/or goes back to her GP or specialist to explain the situation and see if they can recommend an alternative treatment or way around the system.

She can also ring our free confidential helpline if the problem continues on 0808 800 0303.

I'm sorry we can't give any more definite answers than that at this stage but please be aware we are trying everything we can to make the manufacturer know of the importance this drug has to people with Parkinson's and are exerting pressure on them to resolve the issue.

Best wishes
Dave, Forum team

27

I had the same problem sourcing a supply for my wife who has just been prescibed with Amantadine. Only just managed to secure a months supply but have been informed that supplies should be becoming more available by the end of July 2014 - Lets hope that this is true!

28

Hi All,

I'm really sorry to say that we have heard the end of July supply of Amantadine has been delayed. At the moment Alliance say they expect to get stock in on August 25th. I know this is really awful news and I am afraid we don't have much more information yet. We are working hard to find out more and looking at how we can take further action and campaign about these continued problems.

Once again I'm sorry to be the bearer of such bad news. We know how important this drug is.

Eorann

29

i would also like to add to Eorann's message from the other day. Just to confirm it is the amantadine capsules Alliance are expecting to be fully back in circulation by mid-August, however the syrup version of the drug will still not be back in stock until late September (as per my message of 16 July).

If you are having difficulties we advise you to speak to your pharmacist and/or specialists as to what your options are. 

I hope this is helpful and I'm sorry we can't yet bring better news. Please keep an eye on our website next week though as we plan to push Alliance for immediate action and will need your support!

Leo

 

30

Hi,

You can now email the CEO of Alliance (the suppliers of Amantadine) and tell him what you think about the Amantadine shortage and ask him to work with Parkinson's UK so this never happens again.

Our action will take you through easy steps to a customisable email for you to send to the CEO.

The more emails we send and experiences we share the more pressure we put on Alliance to listen to us.

Take action for Amantadine now.

Thanks,

Eorann

31

Dears,

Try to supply Amantidine from Greece or Bulgaria, it is known as PK Merz there... 

32

Thanks to Parkinsons.org for this forum, but here is another question.

Should the NHS not have picked up on this and sourced overseas? Even more so if the patent has lapsed.

Whose responsibility is it to buy for the NHS? And when Alliance broke the supply contract, where was the purchasing arm of the NHS's procedure to enforce supply or go to an alternative supplier?

It is ludicrous to the point of insanity to just say oh dear, a fire, nothing we can do. Generics are available throughout the world and this failure was easily surmountable for the NHS.

I have asked Alliance for a written guarantee that they will supply by mid-August, but the thread above gives me no faith that they will.

 

33

I have been on Amantadine for years , now told I cannot get any .  Worried about the effects of suddenly stopping taking it .

Does anyone know of a suitable alternative ?  I am awaiting reply from my Neuro

 .

 

34

Hi singingpete,

Unfortunately there is no alternative licenced in the UK. The only advice we can give is that you either speak to your GP, PD nurse and/or specialist  and see what they advise. Other than that it might be worth trying as many pharmacies as possible as some may still have stock.

We have been in discussions with Alliance pharmaceuticals and they have committed to resolving the supply problems by mid-August.

I hope this is helpful.

Thanks,

Leo

 

35

Thanks Leo ,  I have also been told that there is no alternative .  My local pharmacist says he has been asking questions to suppliers , he then told  me non would be available till 2015 .   Do not know who to believe , but I do know my mixture of meds has worked fine for many years and now anything could happen .

Trying to wean myself off it in stages with the bit of syrup I have left .

Cheers ,  Pete

 

 

36

HI singingpete,

I am really sorry to hear about your situation and I can only hope that it does not negatively affect your condition. We have been speaking with Alliance over the past few days and they assure us this isn't the case.

The only advice I can give you is to shop around your local pharmacies as there may be one that has some stock of the drug. 

We will be issuing a joint statement with Alliance over the coming days so do look out on the forum for this.

Thanks,

Leo

37

Thank you to everyone who sent emails to Alliance Pharmaceuticals over the course of the last week. Following your efforts we have had constructive discussions about the disruption in the supply of Amantadine.

 

Alliance have issued a joint statement with Parkinson's UK, apologised for the problems and assured us that the capsules will be back in circulation by mid-August. 

 

Furthermore, Alliance have since confirmed that:

 

"The delivery of Symmetrel Capsules due mid-August has now arrived and is currently available for pharmacies to order from their wholesalers. A further delivery is anticipated at the end of August and the total quantity equates to over two months stock at normal demand."
 
However, we will continue to closely monitor the situation so please do keep us informed should you have any more problems with sourcing Amantadine.
 
Thanks,
 
Leo
 
38

Hi

Sorry me again, this seems to be the only place I can get any information.

The MS trust has just posted about there being an issue with Amantadine, I don't suppose if anyone knows if this is a new issue or a follow on from this one?

Thanks

Claire

39

I Picked up my repeat prescriptions this week , only to find Amantadine not available again !. When is this problem going to be sorted ?

40

Hi all,

Please see our website as there have been new developments with Amantadine: http://www.parkinsons.org.uk/news/6-october-2014/changes-parkinsons-drug-amantadine

This might explain any supply issues. Please keep us updated if there continue to be issues.

Thanks,

Leo