GP refusing to give prescription

[Brenda23]

Hi everyone,

Hoping someone can give me some advice. My 10 year old DD caught cold sores from one of her friends (not sure which one), and since then gets them monthly, which is really upsetting her.

I spoke to the GP to get medication to help reduce it and she says it’s not licensed for her age. The normal Zovirax stuff hasn’t been working and she’s gets lots around her mouth and nose.

I was reading online that GPs can prescribe ‘off label’ which means they can give prescriptions for medicine where the benefits outweigh any risks.

Does anyone have any experience of getting medicine off label or what I can do? I don’t know if I’ll have the same problem if I go and see a private GP.

Op sounds weird but have you tried the boots own liquid coldore stuff?

It's in a clear glass tube and it like water in consistency

I've suffered with cold sores for years thanks to an auto immune Disease and when I get them I don't get a tingle.
They literally pop up out of nowhere and bloody hurt

My top lip is very scarred from them. I tried anti virals a I lover but they then stopped prescribing it for me.

I've tried every other tonic or cream even compeed patches at £10 a pack and they made it worse.

I find keeping lips moisturised with Vaseline daily helps but when they do appear I instantly apply the boots tonic and it literally dries them up within a couple of days. It's absolutely brilliant stuff.

Has the go done bloods to check she doesn't have any deficiencies?

I would seriously consider going to a different gp if not because they were one of the signs of my immune disorder.

I also used to get them as a child and consultant told me I'd probably had the underlying problem even back then.

And yes it does make you fee absolutely shite not only because of how they look but they make my body achy and tired/drained.

It's bloody miserable

I use l-lysine from Holland and Barrett and haven't had a cold sore since I started taking it about 6-8 months ago.

Boots do this zappy thing which is amazing in cold sores, it’s about £30 I think.
It does hurt when you do it, so probably not great for a young DC, but worth a go for anyone reading who suffers badly.
It’s made such a difference for me

@Brenda23 I don't understand the gp...what dose are you asking for of acyclovir? My dd takes 800mg x 4 times a day as she is on Methotrexate and any time we suspect contact with CP we have to out her on it. She ends up onnit at least once every 3 months.

Generally it’s paediatricians who initially prescribe off licence then after that the GP will continue ..... So it sounds like your GP is following GP guidance re prescribing

@Terminallysleepdeprived

I wanted the recommended dosage that would suppress the virus as she went from having one every couple of months to at least 5 every month now. They are really painful for her and makes her feel tired. The GP is not interested in prescribing any amount as she says it’s not licensed for under 12s.

@wtfisgoingonhere21

I’ve only tried Zovirax but now have other ideas to try. She takes a multivitamin everyday to support her immune system.

The GP is only offering phone consultations, no offer to take bloods or anything else, plus she’s the only GP in our catchment area so have no alternative choice really.

You can’t get oral aciclovir from an online pharmacy unless you have a prescription.

Totally understand the GP not prescribing as it’s their licence but you daughter could do with a referral to paediatrics for further tests and management - they would also be more likely to prescribe off label medicines as they are specialists

How difficult for your daughter and can see how frustrating it is for you. Lots of good ideas here.

I also get cold sores and am a big advocate of L-lysine. I see it says not for children but I think looking at the suggested L-lysine rich foods is an excellent idea. Get her eating those and go the natural way.

I have the tablets but don't take them on a regular basis only if I get a cold sore. I don't get many - maybe 1 every two years but I do have a pot of an L-lysine balm which I use whenever I feel something about to occur so definitely get some of that.

Also worth looking into triggers. I know some foods can be - maybe because they deplete lysine? Can't remember why now! Can only remember almonds being one right now but worth looking that up.

And always always strong sun screen - one of those lip salve type ones, every time out in the sun.

Lysine has been an absolute game changer for me! I didn't bother with it for years because I thought how good can it possibly be compared to all the pharmaceutical things I've tried? I only take a couple a week and it keeps them at bay

Zovirax is acylovir, so the doctor probably won't prescribe it, as you're already using it.

And won't prescribe valtrex (valacyclovir), because although it can be used during acute chicken pox (and is considered for very serious cases only)

I mucked up my earlier post with a typo! What I meant to say is that Just because it can be used in serious acute cases does not mean it's OK for young children to use for a chronic condition

I hope you can find an alternative way to manage the cold sores.

I used to get terrible cold sores as a child, it hurts. I've tried a few things over the years. The tablets are a game changer so if you have any way to push for that do try - can you self refer to a specialist? Not sure, sometimes you can.

Now I alternate aloe vera gel and zovirax. The aloe sometimes seems to stop the cold sore in its tracks, but it also work once it breaks out to limit secondary infection and clears it up really quickly. Now if unlucky and get an outbreak its gone in 3 days. I haven't needed the tablets for about 4 years with this new regime.

[quote Brenda23]@Terminallysleepdeprived

I wanted the recommended dosage that would suppress the virus as she went from having one every couple of months to at least 5 every month now. They are really painful for her and makes her feel tired. The GP is not interested in prescribing any amount as she says it’s not licensed for under 12s.[/quote]
That's really frustrating, I don't understand why they would licence oral use for the immunocompromised but not for "healthy" kids. I am so sorry they are being so pedantic.

Is it worth chatting with a herbalist to see if they can help?

Have you thought about going to a private GP? They are often more amiable to prescribing other drugs which NHS GPS don't as a first course of action, they'll have more time for you and listen to your concerns.

I did this for DSs acne and the private GP was appalled at how we'd been fobbed off with what was basically a bar of soap when he needed to be on antibiotics.

@Terminallysleepdeprived

That’s what I don’t get too. It’s just really frustrating.

I will google herbalist and see what comes up unless anyone has any recommendations?

@Twinkie01

I did initially think about a private gp but was thinking they would refuse to write the prescription also. I also looked at seeing a private paediatrician but I was quoted £260 for a consultation and £260 for every visit!

It's usually about £90 for a private GP appointment. Worth a try if you can afford it.

Aciclovir IS licensed for children under 12. link to SPC

I'm a hospital pharmacist and this is the resource we would use to check what each medicine is licensed for. Scroll down to the dose section, then paediatric population and it states for treatment of herpes simplex infection children over 2 should have the adult dose.
Aciclovir isn't licensed for cold sores as a preventative treatment however I've been plagued with them all my adult life and they are so depressing! I had 4 at once for my 40th birthday and they were awful. I saw my GP at this point and he prescribed me a 5 day course of treatment (licensed) then advised me to take them preventatively twice daily long term (unlicensed). I now just need to take one daily and they are a complete life saver. Lysine and all the other suggestions here didn't work for me.
If I were you I would take your DD to the GP when she has a flare of cold sores and ask for a course of aciclovir for treatment. I found that a full course of 5 tablets daily for 5 days could keep them at bay for a long time. Take her every time she has a bad cold sore and get a course of treatment.

Not sure if that link will work. Here it is again www.medicines.org.uk/emc/product/4334

Also screenshot from the BNF which is the best prescribing resource used by prescribers in the UK

@imstilljenny2

Thank you so much for this info. Really helpful.

Lysine, regardless of the scaremongering... it's just a protein. Better than drugs.

Lysine, regardless of the scaremongering... it's just a protein. Better than drugs.

Yes & no. It's an amino acid that works with others on proteins & though definitely better than drugs, it does require caution as it can knock the amino acids etc out of balance & cause issue, such as raising cholesterol or causing deficiencies.

Definitely better than drugs though as it's a natural substance your body needs to function, but some sort of supervision would be advised

That won't affect any taken in via food though as your body can balance that with arginine etc itself

Acyclovir orally as a preventative for herpes simplex isn't licenced for under 12s unless they're immunocompromised, so there's no point going private as they won't go against the bnf either, and a Paediatrician would be very unlikely to either. What you could do though is ask the gp for a course of acyclovir to take at the first sign of a cold sore as a lot of people find this helps get rid of an outbreak quicker and for longer.

With her having so many so quickly, it might be worth she's not accidently reinfecting herself- is she properly washing hands etc, using fresh towels after an outbreak, not using the same lipsalves etc. As others have said make sure you always have a fresh tube of acyclovir cream (zovirax) and encourage her to use it as the first sign of an outbreak.

If your gp continues to be so difficult, next time she has an outbreak it might be worth trying to see an out of hours gp, as hopefully they will be a bit more helpful/sympathetic.