I’ve been taking Propranolol for 2.5 years. As my GP was clueless about its use as a preventative I ‘wasted’ over a year on too low a dose to control enough symptoms, but once increased by a second neurologist’s recommendation and following about 8 months on the upped dose I really started to see results. I’m now 18 months into the upped dose, steady balance (no rocking) and generally at about 85%. Even had a very few days 100%. Still doesn’t take much to wind it up but many symptoms much reduced most particularly the extreme photophobia. So on I go with the Propranolol, or so I thought. I do have an added complication in that I have GERD which means some brands cause me chronic indigestion which has been attributed to their outer coating,
There is a current and ongoing shortage of the twenty most commonly prescribed drugs. I’ve written elsewhere about it months back. I had already been advised it might be difficult to obtain my preferred brand. Last month I collected some of my pill allocation and an IOU! This month I have been given a full quota of a totally different brand. This morning I spoke to the pharmicist about the possibility of obtaining my usual brand and was told that would be impossible. Nobody (stockists) have any although he suggested I might want to ring around myself to different chains to be sure. After a brief discussion on the various possible reasons for the national shortage he told me it’s not just a question of ‘my’ brand being unavailable but Propranolol generally being in short supply and said it could happen that there would be no Propranolol available anywhere at all, at which point he suggested my best bet might be to go back to my GP and just ask to be put on some totally different drug instead!. Just as if it were only that easy!
‘Out of the mouths of babes …!!
Just thought my fellow MAVers might appreciate the joke.
Granted. There are generics being produced but he’s saying too many peope chasing too few drugs. Just like the current Eppipen crisis. I suspect one firm allowed to get the monopoly. Too few drugs being produced to meet demand. Of course it’ll affect the other drugs too, Ami’s another I saw and various anticonvulsants
MP? That’s an idea but they are all Brexit-blind currently I suspect. Helen.
I went chasing ‘mine’ but no he’s referring to all Propranolol supplies generally, and no he wasn’t being awkward, he’s great guy. Always exemplary in terms of helpfulness. I’ll flag him that in case. Helen.
That’s the downside of the more modern meds and brands.
Ami is ‘two pence a pill’ they say. (though in the UK we pay a standard £9 whatever the prescription I believe, so long as the medication is approved. - Helen correct me if I’m wrong here)
Correct, one standard charge per prescription which can include alot of items. Don’t think there’s upper limit. Pharmacists are good usually and will advise if it’s actually cheaper to buy OTC rather than on prescription as sometimes happens but if course some drugs are onky available on doctor’s prescription,
I think you will find Ami has increased dramaticaly in price recently, price the NHS pay manufacturer for it. All twenty most commonl prescribed drugs have. Propranolol has gone up from £1.99 a packet of 28 pills to £19.i9 if I;m to believe all I’ve read. As they are ‘older’ drugs guess they are cheaper than newer inventions not that we have a choice. It’s not like buying jar of coffee after all. Helen
Have today had letter from my MP saying he has taken up my case with Matt Hancock, Secretary of State for Health so we shall see. My husband reckons they will say there is no shortage and I’m deluded! Mmmm. Helen
Well, the saga goes on. Collecting our 4 weekly repeat prescriptions is getting to be a bit like opening Christmas presents from that eccentric old aunt. ‘What have you got?’ Is the cry that goes up as we open our relevant paper bags. Mine, despite a specific manufacturer listed on the script, this month, is different again. Three different manufacturers in three months. The composition must be so very different going by size. Last month’s pills were a good half as big again as my ‘usual’- or should I now say ‘former’ brand - and the latest offering contains the tiniest pill it must be possible to produce. Will I know I’ve swallowed it. Just thank goodness I don’t have arthritic fingers. Helen
Have today had further correspondence relating to drugs shortages requesting further details of brands involved etc, replied same day. Handy thing email. Fortunately changing manufacturers twice in two months doesn’t seem to have had any adverse effects as far as I can tell but it does seem a bit daft when you think the condition makes for hypersensitivities of all sorts and doesn’t like change, one has to be so careful what one does and doesn’t eat and drink then one is expected to keep swallowing different pills.
Latest update: yesterday my SO called at our local pharmacy to collect our prescription (electronically transmitted from our doctors surgery every 28 days) as he has done for years, mine’s three, his probably six. He got his pills but was told they didn’t have any 40mg Propranolol pills, only 10’s so couldnt supply mine. Instead they gave him a hardcopy script and told him to try somewhere else! He went to the nearest Lloyds pharmacy who had 40mg, but no 10’s but said they might get some in today which they did. So they supplied my Propranolol. Yet another different brand. Had a different one each month so far. Such shortages could be worrying bearing in mind one has none in hand. Just have to collect 28 days’ worth every 28 days. Could be very difficult for those without transport too. All getting a bit silly. I’ve emailed my MP with an update. Whatever is going on. Helen
This week we collected next month’s supply from our local pharmacy without incident. My batch was made up from two different manufacturers (each of which I have recently used) each providing one strength. Today I recived a written response from the Department of Health & Social Care advising me they have contacted the manufacturer of my preferred product, been told there is no drug shortage and advised in case of further difficulty to refer my local pharmacy to the manufacturer. I intend to copy him with this correspondence and look forward to hearing his response. I think there’s a strong possibility somebody higher up in his supply chain is spinning him a yarn, and the shortage is either a result of unpaid bills or the fact they are obtaining alternative supplies elsewhere because they are cheaper which is fair enough I suppose but why not tell the truth. That could be damaging somebody else’s integrity.
During the course of this saga I’ve spoken to a peripatetic pharmacist working in the south west but who comes from Birmingham. He works for a different chain but was well aware of drug shortages and told me certain large chains always have preferred status with suppliers and suggested I migrated to one he mentioned. Unfortunately there are none locally. Helen
Having received the above reassurance just 16 days ago today’s television news coverage announced a severe shortage of the most widely prescribed drugs, ie betablockers, calcium channel blockers, anti-depressants and anticonvulsants which apparently has been going on for ten years, and relates to shortages of supply of the natural base constituents! I rest my case. Helen.