Pharmaceutical companies

[moll 61]

Hi

I have the exteme misfortune to suffer from Cluster Headaches,

 

part of my treatment for this is Sumatriptan injections, these come in 6mg auto inject pens.

 

I am only allowed to use 2 in any 24 hour period.

 

some days I have to ride out 2-3 other headaches at 45 mins each.

 

Having joined support forums etc I have noted that most sufferers split their needles (physically dismantle the auto inject pens)

and manually inject 3 mg as this will abort an attack and will give them 4 injections a day if necassary.

 

I have asked my GP if they come in smaller doses and he states no.

 

In the states, they get vials of Sumatriptan and needles to draw up their own dose.

 

I have emailed the pharmaceutical co that produces the pens and asked why they do not do smaller doses

and the reply was a short one line " we only do the 6mg" no reason as to why etc.

 

surely this must be costing the NHS if I am using twice as much as I need to,

 

and I am suffering twice as much some days as I need to.

(if you are not familiar with CH google most excruciating pain known to science).

 

Should I press this with my MP?

 

or what action could be suggested?

 

Many thanks

[rebel11]

Hi moll61

 

Contact your local NHS Trust, http://www.nhs.uk/NHSEngland/thenhs/about/Pages/authoritiesandtrusts.aspx

 

Also contact NICE, http://www.nice.org.uk/

 

It could potentially benefit others.

[moll 61]

Thnaks Rebel on it now

[rebel11]

You could also contact the Migraine Trust they could also help you in this regard.

 

http://www.migrainetrust.org/factsheet-cluster-headache-10908

 

Thnaks Rebel on it now

[moll 61]

I wrote to the NHS who redirected me to NICE who inturn directed me to MHRA, they have responded and will get back to me within 18 days. I mentioned this to my Doctor and was met with a blank expression, I felt as if I was interfering? I am due to see my Neurologist next month and hope to have some information with me to see if us sufferers can obtain what we need and probably save the NHS a fortune in the process

[BazzaS]

I wrote to the NHS who redirected me to NICE who inturn directed me to MHRA, they have responded and will get back to me within 18 days. I mentioned this to my Doctor and was met with a blank expression, I felt as if I was interfering? I am due to see my Neurologist next month and hope to have some information with me to see if us sufferers can obtain what we need and probably save the NHS a fortune in the process

 

Would it help if you can "back up" the anecdotal use of lower doses by dismantling kits with some of the clinical research behind this practice (noting that GSK even supplied 3mg kits during their study in Japan).

 

2 links to such (there may be more studies too.....)

 

http://www.ncbi.nlm.nih.gov/m/pubmed/16109122/

 

http://www.gsk-clinicalstudyregister.com/files2/21105.pdf

 

Sadly, though : it may not save the NHS money.

Just because it has half the dose doesn't mean half the cost as the drug may not be the main expense.

In fact, if it is only produced in small amounts, the lower dose kit might be more expensive!.

However, if you can take 4 doses (treating 4 attacks) instead of 2 doses (treating 2) : it may be a better option for you.