Dilemma with medication - update: Just had a follow... - PMRGCAuk

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Dilemma with medication - update

Karendeena profile image
28 Replies

Just had a follow up appointment with my GP about the meds.

Rheumatologist suggested Ramitodene? No longer being produced and neither is Famitodine so no longer available as stocks have been used up. So back to the dilemma, apixsban puts me at higher risk of stomach bleed but PPIs upset my GI (or is it the prednidolone)? Doc says try a different PPI and my cardiologist thinks it would be a good idea to have stomach protection.

I asked about enteric coated prednidolone but the NHS won't pay for these so it's private prescription only! Feeling pretty low and fed up right now. Sometimes I think I would rather put up with the pain and come off the prednisolone altogether 🥺

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Karendeena profile image
Karendeena
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28 Replies
Bcol profile image
Bcol

Hi Karendeena. I might be wrong but I'm sure we have members on the forum who are prescribed ECPred on the NHS.

Karendeena profile image
Karendeena in reply to Bcol

Bcol, my GP says it's 'blacklisted now and I can't gave it, only on private prescription

Bcol profile image
Bcol in reply to Karendeena

That's interesting, it might cause a few ripples across the community.

SheffieldJane profile image
SheffieldJane in reply to Karendeena

Do you know why it is blacklisted Karendeena?

Karendeena profile image
Karendeena in reply to SheffieldJane

Hi SheffieldJane, I am in the East Midlands and my GP said they used to prescribe it frequently, however she told me that scientific evidence has bee provided that there is no real proof that it is any better than ordinary prednisolone so they are not allowed to prescribe it on the NHS any more. I expect cost comes into the equation somewhere as I can have it privately. If the latest PPI doesn't suit me I may have to do that

SheffieldJane profile image
SheffieldJane in reply to Karendeena

Yes, I just found a document to support this too but I couldn’t make it copy and paste. I think I’ll swop for the ease of cutting tablets.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Answered this in another post - but replicated here for completeness -

Not sure that’s strictly true - particularly when you add in the additional cost of a PPI - if you want (or can be bothered) to challenge have a look costs -

bnf.nice.org.uk/medicinal-f...

Just select DRUG name and then “medicinal forms” for prices…

Link is already on Prednisolone

SheffieldJane profile image
SheffieldJane

The NHS pay for my coated Prednisalone.

Karendeena profile image
Karendeena in reply to SheffieldJane

I will go back to them and ask why I can't have it, could be a post code situation

PMRpro profile image
PMRproAmbassador in reply to Karendeena

It'll probably be your practice manager ... And incorrect information.

Karendeena profile image
Karendeena in reply to PMRpro

PMRpro it was my GP who told me

PMRpro profile image
PMRproAmbassador in reply to Karendeena

They are told their practice rules.

When it all came up originally years ago GP were included in the consultation, patients weren't (we don't know anything) and GPs were happy to do it. At the time e/c was a lot more expensive than plain white pred. Until e/c was "banned" - the manufacturers of plain white pred, having no competition, soon increased their prices so there was little difference in overall cost. And GPs were inundated with patients who had developed GI problems they had never had while on e/c pred. Partly because of the PPIs no doubt - but it is inescapable that patients on more different drugs have more problems so e/c pred takes one factor out of the equation. QED

TM1970 profile image
TM1970 in reply to PMRpro

😆😆

SheffieldJane profile image
SheffieldJane

It’s what you said - the cost and very limited evidence that they protect against GI issues / ulcers. In fact since being on them I have been less careful and I’ve developed significant symptoms. Thanks for raising this. I hadn’t noticed previous discussions but my case is proof of the pudding, as it were.

SheffieldJane profile image
SheffieldJane

enhertsccg.nhs.uk/sites/def...

I hope this works! X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Yes it does..I also found similar from PanMersyside HA saying similar - panmerseyapc.nhs.uk/media/1...

But couldn’t find anything more recent…so why has the issue now surfaced, if not on cost terms!

Bcol profile image
Bcol in reply to SheffieldJane

I wonder if this will only appy to Hertfordshire or go countrywide?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bcol

Already is in other places….

Karendeena profile image
Karendeena in reply to SheffieldJane

Thanks SheffieldJane

PMRpro profile image
PMRproAmbassador

The next one is cimetidine ...

Drivel - lots of people on the forum on enteric coated pred and it is actually similar in price to plain pred plus a PPI by the time the extra dispensing fee is added in.

I'm sure someone will provide the prices from BNF (I can't access it) and the dispensing fee per prescription is from about £1 and varies upwards.

PMRpro profile image
PMRproAmbassador

Just in case you don;t see it in my reply to Karendeena:

When it all came up originally years ago GP were included in the consultation, patients weren't (we don't know anything) and GPs were happy to do it. At the time e/c was a lot more expensive than plain white pred. Until e/c was "banned" - the manufacturers of plain white pred, having no competition, soon increased their prices so there was little difference in overall cost. And GPs were inundated with patients who had developed GI problems they had never had while on e/c pred. Partly because of the PPIs no doubt - but it is inescapable that patients on more different drugs have more problems so e/c pred takes one factor out of the equation. QED

Judyliz profile image
Judyliz

I have absolutely no doubt that enteric coated prednisolone works for me. I will have been taking prednisolone for 6 years in May and have had two trips to A&E with severe gastric symptoms. I won't bore you with the details but they started about 5 weeks after GP refused to continue to prescribe e/c tablets. A&E consultant did suggest I ask again.You can buy gel capsules from that easily accessed on line marketplace beginning with 'A'. They are very easy to swallow and made a huge difference to me. Good luck.

Floridafan profile image
Floridafan

I’ve just collected my prescription of 2 boxes of Famotidine with an expiry date of April 2024. Did they say why it was no longer being produced? I knew that Ranitidine was no longer available but have heard nothing about Famitidine.

I have been on enteric coated Prednisolone for over 3 years, again I have just collected my prescription for E/C 2.5 Prednisolone….no charge!

PMRpro profile image
PMRproAmbassador in reply to Floridafan

I suspect someone got hold of the wrong end of the stick - not "not being produced" but unavailable because of greatly increased demand since last year:

pharmaceutical-journal.com/...

Do like the quote from a consultant pharmacist though:

"“Many patients were changed to PPIs, which are sometimes not as effective,”"

Not just our imagination it seems!

Nightingales profile image
Nightingales

I have had no problems with getting enteric coated on the NHS. I have Gastro oesophageal reflux and have been able to half my pantaprozil (a PPI) because of it. My GP did mumble something about people not noticing it makes a difference but it has been successful for me.

orangemax profile image
orangemax

I just checked on Amazon, and Pepcid AC is for sale. That is famotidine. I was told to take that by my gastroenterologist, when ranitidine was taken off the market.

Karendeena profile image
Karendeena in reply to orangemax

Hi Orange max, thanks, just checked with my pharmacy and famotidine is still available on prescription, so I'm going to give it a try. Do you have any GI side effects from it?

orangemax profile image
orangemax in reply to Karendeena

Actually, I feel that the famotidine does a better job for me than the ranitidine did. No problems from it whatsoever. Just a side note - Here in the US, they've been using famotidine alongside other meds for Covid19. I remember President Trump mentioning it as one of his meds when he got the virus.

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