Posted , 2 users are following.
I have just received a letter from my doctors referring me to a haematologist as Phenindione is due to reach critical levels so I need to find something different.
i can not tolerate warfarin as it gives me sickness and diarrhoea.
is anyone else in the same situation and if so what are they changing to. I am not sure if I want to be on a new drug that no one really knows anything about.
thanks in advance
Nic
1 like, 15 replies
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reddisa NicE
Posted
My haematologist has been trying to persuade me to switch to Rivaroxaban but there is no good evidence out there about side effects or interaction with other medication. Additionally, they are trying to 'sell' this anti-coagulant to me as a 'more convenient' treatment since INR readings will be a thing of the past. Frankly, I need the reassurance of self-testing INR to ensure therapeutic levels (particularly after 2 PEs and a brain aneurism) .
I have contacted NICE several times previously and their responses have all been the same, ie aware of delivery issues, supplies due shortly and that both NICE and the DH accept the importance of Phenindione as our anti-coagulant of preference. I will contact NICE again on 04-01-16 and post their response
best wishes
NicE
Posted
you have the same concerns as me, I have Lupus and Hughes Syndrome and am already on enough medication. The thought of going on a relatively new and unproven drug worries me a lot.
I have an INR theraputic range of 3.5 - 4.5 and like you wish to see it in this range for myself.
My pharmacist managed to get hold of some 10mg for me this week, but has been unable to get 25mg for a couple of months.
To be honest I would rather go on Enoxoparin injections whilst the phenindione is out of stock, it can't take them that long to make a batch surely.
reddisa NicE
Posted
'We are sorry to hear that you have not been able to obtain this medicine. We are checking with colleagues to understand the current supply situation; we will come back to you shortly.
Emis Moderator comment: I have removed the contact details etc as we do not publish these in the forums. If users wish to exchange these details please use the Private Message service.
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NicE reddisa
Posted
it will be very interesting to see what they have to say for themselves. This has been ongoing for years, you think they would be able to rectify the situation by now.
My appointment with a haemotologist has come through for the middle of March, hopefully I will be able to go them armed with some helpful information.
I look forward to your next update.
Nic
reddisa NicE
Posted
Just received the following from MHRA:
'Thank you for your email.The sole manufacturer of phenindione tablets in the UK ‘AMCo’ has continued to experience manufacturing difficulties and is currently out of stock of phenindione 25mg and 50mg tablets. The company has been working hard to resolve these issues and expects supply of the 25mg strength to resume in February.
Supplies of the 10mg strength remain available and pharmacists should be able to obtain stocks from their normal wholesaler.'
I'm going to put in another prescription for 10mg as I would rather stick with Phenindione than go through the inevitable side effect problems with Warfarin or change to yet another anticoagulant.
Wish you well
NicE reddisa
Posted
that at is really good news, hopefully by the time I go to my hospital app stocks should have returned to normal levels.
take care
reddisa NicE
Posted
Given the run around again! Local pharmacist at surgery wouldn't fulfil repeat prescription for 10mg because of very short use by date. I contacted consultant and he arranged for hospital pharmacy to provide enough Phenidione until wholesalers get new stock. Good news is that the new supplies should be available in February with a 2017 use by date. 80 mile round trip to collect from hospital which I will do next week. Will post again when I actually get the 'stuff' in my hands!
NicE reddisa
Posted
i have been told that short date or out of date ones are still ok to use if you are checking your inr regularly because you can monitor their effectiveness.
february isn't too long to wait for a new batch, the way my gp was acting you would think they are not going to be available for the next 6 months or so.
good luck on your hospital trip.
reddisa NicE
Posted
My GP took the initiative and spoke with the consultant last week. Since then I've had 2 confused conversations with surgery staff. I've decided to politely listen but continue to self-manage and trust the CoagChek readings as I've done for the past several years.
NicE reddisa
Posted
reddisa NicE
Posted
That's interesting!!!. I've been away and in my absence one of my outstanding repeat prescriptions was delivered - a month's supply of 25mg with a use by date of April 2017.
I certainly will not be changing to any other anti-coagulant. My next haematology appointment is on March 9, so perhaps the issue future dispensing of Phenidione will be raised then. Will keep you posted.
best wishes
reddisa NicE
Posted
My latest on Phenindione - I tried to get repeat prescription online earlier this month and found that it had been removed without notification! Took several calls to the GP to be told eventually that this is now on restricted list and in future can only be prescribed by haematologist.
Contacted Derriford and consultant clearly knew nothing about Phenindione now being on the 'restricted list.This is where it all gets silly. Two hours after the conversation with GP's receptionist, their pharmacy delivered 2 weeks' supply, again with no indication of who prescribed Phenindione.
Today I collected 2 months' supply from hospital pharmacy - the prescription had been sent from Haematology and the use-by date is April 2017. I'm not changing to another anti-coagulant and my next haematology appointment is 8 June. Surely we can't be forced!!
be well
Reddisa
NicE reddisa
Posted
i don't see my haematologist until June either.
my anti coat team told me that it was restricted because of its price, they also told me that I couldn't be made to come off of it if I didn't want to. I am just hoping that they are right.
i have also been getting a good supply of phenindione with a use by date of April 17, so even though my docs told me that I needed to change as it was due to go out of stock it obviously isn't the case.
i will let you know how I get on with my hospital app, I think we may have a fight on our hands.
Nic
NicE reddisa
Posted
well I finally had my hospital appointment with the haematologist this morning.
My local authority had contacted my doctors stating that I needed to be taken off of phenindione as it was not often in stock and that it was too expensive and that it should be replaced with Rivoxaban.
My consultant was quite surprised as Rivoxaban isn't licenced for Antiphospholipid Syndrome and is still under trial and so wouldn't prescribe it for me even if I wanted it.
He agreed for me to stay on phenindione whilst the drug is under trial and to use cleaxane injections if and when it does go out of stock and I have got another appointment in a years time to review the situation.
I hope you have as much success in a couple of days.
Take care
Nic
reddisa NicE
Posted
Hi Nic
?A belated update on my haematology appt. Yes, it now seems that its the cost of Phenindione not a shortage - but then we knew that! I've been assured by both the consultant and the hospital pharmacist that they will continue to prescribe and obtain Phenindione for the foreseeable future. My next appointment is 27/07 so I guess its going to be a case of lurching from one appointment to the next and hoping each time .......
be well
?Reddisa