call us on
01646 651 979

or overseas
+44 1646 651 979

Helpline

(not 24hrs)

 

OUCH(UK) Organisation for the Understanding of Cluster Headache

Straw Poll - Number of sumatriptan injections issued on one prescription?

8 posts / 0 new
Last post
#1 Mon, 16/05/2016 - 23:24
CatherineW
Offline
Last seen: 11 months 2 weeks ago
Joined: 26/02/2014 - 14:41

Straw Poll - Number of sumatriptan injections issued on one prescription?

Hi people.  Please can you can help me out?  I'm an Episodic CH and have been since my mid-20s- (now in my mid-40s) typically 3 months on, 18 months to 2 years off. Diagnosed by neurologist about 8 years ago.

I would be very interested to find out typically how many sumatriptan injections your doctors 'let you have' on one prescription?  My latest ECH bout is on its way (shadows started, when main ones hit oxygen and injections my method of surviving).   I asked for 12 injections as I am likely to be away from home for some of the time in the coming weeks, and away from my oxygen.  However, I have had to deal with a different doctor (all the others have left the practice) who just so happens to be head of the practice and who has said I can't have 12 but she would be "happy to supply 4 injections on a monthly basis"... This is after I wrote a lengthy letter explaining about  the nature of the cluster headaches and possibly being away from my oxygen and that given that we have to ask for repeat prescriptions at least 2 days in advance, and then the stuff takes an extra day to be ordered in, this might not even cover the repeat prescription waiting time...Of course if she can promise that my attacks will only limit themselves to 4 every month over my bout I'd probably be happy!   Am currently awaiting a response from the secretary of the neurologist I saw quite a few years ago -Dr Brendan Davies - as I am getting nowhere with the surgery - Apparently I have to go in to see the doctor and take up an appointment slot to discuss it with her if the 4 injections per month "is not agreeable".  I have been to collect the four as I'd rather have some than none at all for the coming weeks...

I would love to know what other people typically get supplied with before I use up half a day in the drop in surgery to see her.  Please can you all let me know so I can work out if I am being unreasonable here?  In case it's relevant I live in England.

Any help much appreciated!

 

 

 

Wed, 01/06/2016 - 20:00
Peter Shaw
Offline
Last seen: 11 months 2 days ago
Joined: 01/06/2016 - 15:26

Hi Catherine,
I would look at changing your doctor as they have obviously no idea of the suffering of ch-er
My Gp agreed to double my prescription from 12 to 24 injections with the minimum of persuasion. I now ask for what I need,and this is usually granted. I live in West Yorkshire.
Hope this helps.
Pete

Fri, 10/06/2016 - 09:42
Kit
Kit's picture
Offline
Last seen: 8 months 2 weeks ago
Joined: 26/02/2014 - 14:54

Told my GP I needed a weeks supply and he didn't blink!

The pharmacist went a bit pale though.

Benchmark has now been established and hopefully I won't have any more problems on that score at least.

Cheers

 

Kit

 

Mon, 13/06/2016 - 11:01
Val
Offline
Last seen: 18 hours 5 min ago
Joined: 21/03/2012 - 15:16

If your GP won't up the number per prescription, speak to the prescriptions adviser at your CCG - Clinical Commissioning Group - used to be PCTs.  There is provision for more per script for CH sufferers.  Also you could refer your GP to the NICE guidelines on p rescribing for CH.

Val.

Sat, 18/06/2016 - 07:59
Harrietjt
Harrietjt's picture
Offline
Last seen: 1 month 2 weeks ago
Joined: 22/10/2014 - 12:47

We had exactly this ridiculous problem when we moved five years ago and had to change GPs. The upshot of the entire saga was that the GPs knew nothing about CH, apparently couldn't use google, and were entrenched in strictly limiting Triptans because of medication overuse headache (MOH) which I understand is a problem in migraine. Our GP listened to us and then decided to make a phone call for guidance and the situation was then not helped by a random hospital neurologist (who has never been involved in my husbands care and was not a headache specialist) diagnosing MOH on the basis of the phone conversation and advising that all Triptans must be stopped because he was addicted and they were the cause of the headaches!
 
THEN I found the NICE Guidelines telling gGPs how they must treat CH! 
 
https://www.nice.org.uk/guidance/cg150/resources/headaches-in-over-12s-d...
 
Page 17 paragraph 1.3.31 directs GPs as follows 'When using a subcutaneous[17] or nasal triptan[18], ensure the person is offered an adequate supply of triptans calculated according to their history of cluster bouts, based on the manufacturer's maximum daily dose.'
 
We got the Consultant to write to the GP spelling out Zomig treatment at two per day, wrote to the GP practise manager quoting the NICE Guidelines and asking if she could get the situation resolved for us. The practise manager was great and got on the case, but subsequently a series of other random GPs kept refusing to prescribe. We went back to the practise manager saying we couldn't understand why it wasn't clearly on the system that this man is to have this as directed by the Specialist who carries the prescribing responsibility. I also said that from now on the practise must either follow the NICE Guidelines and carry out the Consultants instructions, OR go to the Consultant and have this out with him; but that continuing to ignore NICE and the Consultant while leaving the patient in extreme suffering was not to happen any more, so until such time as they persuaded the Consultant to change his instructions to them we expected to receive prescriptions without further difficulty.
 
We did all this politely and calmly but very firmly and to the point, I must say the practise manager was brilliant and my husbands Triptans were raised specifically by her at a couple of practise meetings.
 
My husband now is prescribed 28 Zomig nasal sprays a fortnight.....
 
The pharmacist securing supplies however is a whole other story, but she is a star and has developed a system of her own! But that is the benefit of a local community chemist.
 
This is such a horrible situation to be in, we were very distressed and desperate at the time. But it was determined calm rationality that won through.
 
Harriet.

Sat, 17/09/2016 - 14:20
MarkShepley
Offline
Last seen: 2 months 3 weeks ago
Joined: 26/02/2014 - 14:04

Only 2 at a time for me which is a pain (pardon the pun) but seems to be limitless on repeat prescriptions. It would be easier to get larger batches but I guess the docs are afraid large numbers of injections would be 'wasted' which I know is definitely not the case. I go to Germany frequently and buy myself back up supplies. Yes, it's costly and I'm not divulging here how I make this happen but the security of having 'enough' injections on hand is priceless as I'm sure most of us would testify to.

Wed, 15/02/2017 - 11:31
Tim973035
Offline
Last seen: 2 months 1 week ago
Joined: 10/02/2017 - 13:05

Hello

I've only recently been diagosed CH and still hopng for something that will stop them coming on.

In the meantime, my GP gave me 6 Zomig nasal sprays and explained they are too expensive to prescribe more. The result is I suffer everything up to a 6 without medication which I find very difficult. I wouldn't treat my dog like this but is this the threshold everyone applies to CH management? Should I only use on the 7-9 rated pain?

 

Wed, 15/02/2017 - 23:10
ElizabethK
Offline
Last seen: 7 hours 45 min ago
Joined: 26/02/2014 - 14:26

Hi Tim,

in the doctors prescribing bible the BNF (British National Formulary) it states the first line of abortive treatment for CH is Sumatriptan injections and then oxygen.  Injections have a limit of up to 2 per day.  This should not be withheld on the grounds of cost.  Zomig Nasal sprays work for some people but not for all.  Have word with your practice manager. There is a link on this site to the NICE (National Institute of Clinical Excellence) guidelines for the treatment of Cluster Headache.

take care

Liz