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Any GPs on who might be able to explain something to me please?

18 replies

Bettyhatesavocados · 22/11/2019 23:30

Apologies that this is longish. I will start by saying this is in no way a complaint about her my NHS GP who is really very good, but rather an attempt to understand what prevents them from prescribing a medicine I wish to try. I have other health issues (CFS/ Fibro). I suffer from rosacea and its ocular component pre-dating the aforementioned conditions. I have v v sensitive eyes and skin, and chemical sensitivities. I do not have facial bumps but I do have painful sensitivity wrt to my face and eyes. I have blepharitis (posterior-type/ Meibomian Gland Dysfunction) with dry eye.
Anyhow, I heard about a medicine called Efracea, a low-dose (40mg) modified release doxycycline which targets the inflammation of rosacea without the negative effects of antibiotics, short-term and long-term. I was surprised when my GP said they weren't allowed to prescribe and offered to contact a derm for advice, which they kindly did.
The derm said no to Efracea (unless I try regular doxycycline or lymecycline first and react badly) when they might then reconsider.
My GP said they would recommend I try the lymecycline because it's gentler than regular doxy.
I really want to try the Efracea because I want to target the inflammation of my rosacea symptoms without anti-bacterial properties of regular doxycycline or lymecycline.
I don't understand why, with the big push to limit antibiotics, the derm refuses a low-dose MR antibiotic which targets inflammation only. I feel like my GP's hands are tied. But I don't want to further burden my already struggling body. I have anxiety too and the idea of trying the alternatives to Efracea (low-dose, one a day) is making me feel worse. I don't want to help one issue while making others worse.
Is there a reason why I can't get the Efracea from my GP? Cost, for example?
I see I can try to obtain online or with a private prescription (not sure if that would have to be from the derm or my GP?) with Lloyds but am not sure how to go about it.
I had tried various antibiotics in the past for my rosacea (pre-CFS/ Fibro) but I am pretty convinced that my CFS/ Fibro (which originally started with a very severe sinus infection) was not helped from getting worse in its early stages by three increasingly potent courses of antibiotics over six weeks. I got worse and worse and never recovered. Of course, I will never know if the antibiotics really did make everything worse and prevent improvement/ recovery, but I'd rather avoid them, especially if I can get the advantage of the anti-inflammatory aspect of them without all the negatives that usually come with antibiotics. Btw, it was a different GP then.
I think, to compound matters, I have a couple of items (took a long time to find!) that I can use to help my facial rosacea (esp my v. red nose) so, at a glance, my rosacea can look not so bad. I'd be stuck if they were discontinued. But, while I have dry skin, and no acne/ pustules, it feels much sorer than it looks..it's hot, sore, tight burning, throbbing pain when it's flaring and can be unbearable. My eyes can be hell and I get a lot of severe headaches from them and both cause increased pain in my upper body muscle groups (tension?). The eyes flaring worsen the skin and vice versa. On top of my other conditions, it can be unbearable.
I could possibly try to raise funds for a private derm appt but if they've told my GP no in a letter, is it worth it anyway, and I hate the idea of trying to explain the more bizarre aspects of my conditions with someone new? Are these online places where you can have a consultation and buy privately safe? I worry about whether the meds are fake...
Thanks for bearing with me and any advice you can offer wrt to a further talk with my GP would be really appreciated.

OP posts:
smileylottie87 · 23/11/2019 01:10

My OH suffers with rosacea and has found that the GP doesn't really prescribe anything without having the dermatologist take a look first as they are the specialists. Every time he wants to try something new he has to see the dermatologist first.

The dermatologist always seems to be cautious and prescribe lower strength medicines first to see if they work before moving into stronger things as it isn't an exact science in that some things work well for some but not so well for others.

OH started doxycycline 3 days ago and is already really pleased with the results. It's a horrible process to go through until you find things that work for you but sometimes a stronger medicine doesn't automatically mean it will work better for you.

All the best in getting something that works for you OP, it's a shit process but you will get there.

Greybeardy · 23/11/2019 02:02

Not my area at all, but googling the product literature suggests it’s contraindicated in rosacea with ocular manifestations - perhaps that’s why they’re not so keen.

Emelene · 23/11/2019 02:05

Is it not because you haven't tried the standard treatment? Also is it licensed in the UK by NICE? If it is an unusual (likely expensive) drug it also has to be on the local formulary approved by the CCG.

Interested in this thread?

Then you might like threads about these subjects:

ThePawtriarchy · 23/11/2019 02:12

I know this isn’t answering your question but have you tried soolantra? I don’t think it can be applied to eyes but there maybe an oral option.

Goldenchildsmum · 23/11/2019 03:06

Who should not take Efracea?
• Children under 12 years of age.
• Women who are pregnant or breastfeeding (see below).
• People who have a condition where stomach acid is not produced (achlorhydria) or who have had surgery to bypass the small intestine.
• People with rosacea affecting the eyes.
• People who are allergic to other tetracycline-type antibiotics, eg tetracycline, minocycline.
• People who are allergic to any ingredients of the medicine.

itsAlmostXmas · 23/11/2019 05:08

Bumping for you

Bettyhatesavocados · 23/11/2019 15:40

Thanks to all who've offered help and advice - I appreciate it. Replies below.

smileylottie87 I'm so glad doxycycline is helping your husband. May I ask what dosage he is on and if he's also affected by ocular rosacea? Oh, and I thought Efracea was less harsh, being 40mg, slow-release and having the anti-bac component removed...

Emeline I think from limited research, it was approved by NICE at lest ten years ago. I have tried other standard treatments way back but my rosacea is worse and now I'm badly struggling with other health conditions so want to avoid those antibiotics because of their harsh effects.

ThePawtriarchy (your username made me smile) I tried Soolantra and it burned, esp on the second day's application, so I stopped. I think it's more for pustular-type rosacea too which I don't have.

Goldenchildsmum I don't think it's a 'Do nut use' if you suffer ocular rosacea. I looked up the leaflet for the med and, under Precautions and Warnings, it said 'Talk to your doctor first if...' you have a type of rosacea affecting the eyes. I wonder if this is because it is a type of doxycycline and that med makes you much more sensitive to sunlight. Although, the regular doxycycline leaflet doesn't mention that (maybe that's a space thing though as Efracea is rosacea-specific, whereas reg doxy treats a myriad of things...
GreyBeardy as per reply to above poster, I can't see that it's contraindicated, just that you should tell your doctor first.
I wish I could see an explanation somewhere as to why you need to speak to your doctor if you have ocular rosacea...can't find anything online as to why this would be. It's frustrating.

itsAlmostXmas Thanks for bumping I appreciate it.

Thanks to every one who has been so lovely and offered help. If anyone else can chip in, especially and UK-based derms or GPs, I'd appreciate it.
My GP is great but consultations are short so I want to have as much info as poss to find the best way forward. Thanks again.

OP posts:
endoflevelbaddy · 23/11/2019 16:01

When NICE approve medication it's often at a particular stage in treatment, which it sounds like this is i.e if pat can not tolerate / does not respond to x & y then can try z.

It's down to evidence (the medication may only have been trialled in pats that already had x & y), cost / benefit (much more expensive than x & y or not significantly better outcome to warrant becoming the standard treatment).

Clinicians will have to justify veering from this pathway and may be penalised / not reimbursed from NHS England

If you look on the NICE website you might be able to find guidelines for rosacea and the TAG for the drug which might help you check if that's the case for the medication you're after. Sometimes it's trust / ccg policy rather than NICE policy so it might arm you to push back with the GP.

Montybojangles · 23/11/2019 16:11

The info on this drug on its SmPC on medicines.org.uk clearly states in the special warnings and precautions:
“Efracea should not be used in patients with ocular manifestations of rosacea (such as ocular rosacea and/or blepharitis/meibomianitis) as there are limited efficacy and safety data in this population. If these manifestations appear during the course of the treatment Efracea should be discontinued and the patient should be referred to an ophthalmologist”.

Bettyhatesavocados · 23/11/2019 16:57

endoflevelbaddy That is really helpful, thank you.

Montybojangles Thanks for posting that. This is where I am confused. It is literally slow-release, low-dose doxycycline minus the antibacterial component, as I understand it, and regular doxycycline is often prescribed in the treatment of ocular rosacea. I'm not sure what SmPC means.
The Efracea info leaflet does not say 'Do not take if you have ocular rosacea, it says to speak to the doctor first'. I don't understand why there is so much conflicting info, even on bona fide sites.
I went to rxlist.com (referred to here by its American name of Oracea) and it says, 'ORACEA has not been evaluated for the treatment of the erythematous, telangiectatic, or ocular components of rosacea.' These are the types I have. I have no papules/ pustules.

Could it be that it's just a case of it's not been tested on OR and the makers don't want to be sued?
Sorry if I come across as argumentative at all. I just thought this medicine would be the better option as I want the anti-inflammatory effects without the ill-effects of antibiotics.
Thanks.

OP posts:
healthylifestylee · 23/11/2019 17:03

I didn't read all of this as it was v long apologies so you may have already covered this in your post

-GPS have what is called a formulary of items that they can prescribe it may not be on there

-different items have different costs, it may be a more expensive item and they have to offer cheaper alternatives (no this isn't strictly fair but if they go for an exepsive option that works without trying the cheaper ones they wouldn't know)

-some things are the gps aren't specialists in, and therefore will refer you to someone who can help better, in this case the dermatologist

Some items are harsher than others with more side effects, trying a less intense treatment is usually preferable. This is often more true with terms of side effects, a harsh medication may do what it was designed to do but could have other side effects that then need treating for you to finish the course
A very extreme idea of this is chemotherapy where people can start a whole course of multiple drugs to battle side effects (understandably not only from the drug but from the illness they are being treated for)

Fatted · 23/11/2019 17:05

The short answer is that it is public money that they have to justify every penny of. They need to try the cheapest option first of all and only if this is not suitable, then they will consider another, more expensive alternative. Also some medicines are not licensed in the UK for certain conditions, although they can treat that condition.

A private appointment will not necessarily guarantee you the medication that you want. They will still only be able to prescribe you what in their medical opinion is best. If they do not think it's suitable given your other conditions, they won't prescribe it.

ncncncncncncncnc · 23/11/2019 17:27

Sounds like you are just being asked to try the standard medications on the formulary first. Go with it, see if they work and if they don't, the GP may be able to prescribe the one you want

smileylottie87 · 24/11/2019 20:57

@Bettyhatesavocados he does have some red by his eyes but it is perioral dermatitis which he takes doxycycline for too. He is on 100mg once per day but there have been studies which show that a 40mg dose is just as effective.

The doxycycline in low doses works more as an anti inflammatory rather than anti biotic

smileylottie87 · 24/11/2019 20:59

Sorry, I forgot to add, have a look at this article it is really informative and helped my OH lots

www.ncbi.nlm.nih.gov/pmc/articles/PMC3168247/

Tasharuby1 · 29/03/2020 09:42

I had to argue with docs but I did manage to get 40mg just stand your ground.

Soontobe60 · 29/03/2020 09:52

It's no use looking at guidelines from other countries, as gps have to follow not only NICE guidelines, but also those of the CCG they work in. So what may be available in one area may not be in another.

I too would do what the dermatologist has advised in the first instance, then go from there.

Tasharuby1 · 29/03/2020 16:24

That’s ok but the NHS is behind the times. Anything over 40 mg has the risk of causing antibiotic resistance. I did a international poll on a rosacea forum. 40mg is the top prescribed treatment. It’s just 100mg is cheaper as it’s made in bulk. Giving people 100-200mg is a ticking time bomb. Even advisors to the NHS do not advise it .
www.guidelinesinpractice.co.uk/skin-and-wound-care/rosacea-newer-treatments-can-avoid-antibiotics/352882.article

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