Docs not talk??

[donnellysdogs]

Sort of none diabetes, but could be relevent to those in pain...

I went to my pain consultant today.

I have suffered from radiotherapy pain in my ribs for 13 months. No medic suggested this pain reliever to me... I found out from flat friends on website...

There is a plaster that called lidocaine. Can be applied for 12 hours and its like having a local anaesthetic. My CCG has double redlined this drug. It is not prescribable.

Anyhow. After being told of no options but the standard nhs tablets that I cannot tolerate I asked about these lidocaine plasters. I waa told that they can work, little or no side effects (skin rash but my consultant couldnt mention unless I did!! What????

At a further £70 cost for a month we are paying for them but I really do not understand how Consultants / nurses / doctors can leave me in 13 months of pain because a drug has been double redlined by my CCG. Nobody even being able to suggest it to me.

So as much as doctors do not like patients using internet for medical solutions... I have suffered needlessly and horribly because nobody could talk to me about this option..

This cant be right surely? Do we really need to go private to even be offered alternatives??

I had lidocaine injections in my neck a year ago, doctors know I can tolerate the drug and yet I've had to go through hell and back before thankfully finding out other flat froend ladies do actually get prescribed this.

Apparently these plasters can be used for some sort of neuropathy but not the pain relief I need them for.

Are other options in all health issues like this... they cant be talked about unless the patient specifically asks??

 

[Sid Bonkers]

Hi DD I have been using Bu-trans patches and lately Transtec patches which contain the drug bupronophine so I imagine the plasters you are talking about are similar, they are generally not prescribed to patients who are opiate naive because of the side effects if you are not used to opiate pain relief drugs like codeine df118.

The redness you describe is par for the course but a tip I picked up from a pain relief forum was to spray "Beconase Hay Fever For Adults Nasal Spray" on the skin where the patch/plaster will go about 3 to 4 hours before applying the patch and it works for me.

I told my doctor about this and he prescribed me some steroid cream because Beconase has a steroid ingredient which is the part that stops the redness and soreness, however the cream was not so good as it leaves a greasy residue that Beconase doesnt which means the patches stick better which is important as you dont want them to fall off when showering, swimming etc.

Try the beconase trick, it might help although the inhalers arent cheap they are worth it

 

[asparagusp]

I see it's available as an ointment - https://www.theindependentpharmacy.co.uk/genital-herpes/lidocaine-ointment - unfortunate link - sorry!

 

[donnellysdogs]

Hi DD I have been using Bu-trans patches and lately Transtec patches which contain the drug bupronophine so I imagine the plasters you are talking about are similar, they are generally not prescribed to patients who are opiate naive because of the side effects if you are not used to opiate pain relief drugs like codeine df118.

The redness you describe is par for the course but a tip I picked up from a pain relief forum was to spray "Beconase Hay Fever For Adults Nasal Spray" on the skin where the patch/plaster will go about 3 to 4 hours before applying the patch and it works for me.

I told my doctor about this and he prescribed me some steroid cream because Beconase has a steroid ingredient which is the part that stops the redness and soreness, however the cream was not so good as it leaves a greasy residue that Beconase doesnt which means the patches stick better which is important as you dont want them to fall off when showering, swimming etc.

Try the beconase trick, it might help although the inhalers arent cheap they are worth it

Not allowed butrans patches or diazepam etc... they play havoc with slowing down colon even more!!
I was on them both at one time (by previous GP) and painconsultant was horrified.

Its 5% lidocaine patches x 30 and Lloyd costing to sell to me is a whopping £108.60 for 30 days supply. I over night so I can sleep.

No orher pain relief comes anywhere near the help butrans and the diazepam gave. I then had 6 lidocaine injections in neck and that got me off the meds.

Then the radio therapy as the tumour was 0.1mm away from rib wall has taken its effect and it and theway I was sliced and stitched has jyst given constant pain.

I decided to come off the cancer tablet Jan as that too was crucifying my health physically and mentally...

Consultant said today (after I brought up about lidocaine) that it would be a safe and effective painkiller to try...

Brought script home to see if I can get cheaper online!! Did before for other cream that was £130 a tube from Lloyds..

 

[donnellysdogs]

I see it's available as an ointment - https://www.theindependentpharmacy.co.uk/genital-herpes/lidocaine-ointment - unfortunate link - sorry!

Thanks for that, I know someone that had mentioned 2.5% spray... this 5% cream could help... especially our pockets!!! I could try cream first for a week?? The patches last 12hours. Will be interesting how long creammanages and how much has to be used.. I may end up needing a tube a day-lol!! Although I'm small its quite a big area to cover with cream...

Thanks for the link.. despite the herpes!!-lol.....

I had to stop the PPI tablets prescribed for stomach because of the chronic hives they gave me... I was taking antihistamines too because of itching from mosquito bites and hayfever... must have been trying to do too much with the antihistamines as became quite ill from the reaction to the PPI's to my skin and hives all over...

 

[donnellysdogs]

Good idea to try the spray on skin!!!

 

[ally1]

So sorry that you have to pay privately for the pain stuff. It's so sad to hear that they work for you, yet you can,t get it on a nhs prescription x

 

[igual88]

Hi I don't know if this may help but the scar I have on my right leg is 14" long by 8" at widest point ( front of leg was stripped off clean to bone ).
Had massive skin grafts etc
Fast forward many years and the nerves etc that were left have got to a state where they constantly send pain,burning signals.
I'm on transtec patches and temegesic sublingual tabs, as well as ketamine cream, as we tried the lidocaine patches but they weren't big enough and the pain when removing them was indescribable.
The ketamine cream physically numbs the area fairly deeply if you re apply 3 times a day.

Hope you find a solution

 

[DavidGrahamJones]

I've had back pain (muscular spasms) for many years but just recently I've been close to tears because it's got a lot worse and even walking the 1/2 mile to the shops sets it off. I feel that nothing works except for large quantities of cocodomol which I really would like to avoid.

Thanks for the Lidocaine cream and Ketamine cream references, something else I can try at least.

 

[donnellysdogs]

Lol.. gave up last night trying to get online lidocaine patches!!
Found one company... went to pay. Card declined by bank as they thought it was being used fraudulently!!

Gave up... new day today...

 

[Brunneria]

Can you please explain what 'double redlining' means. @donnellysdogs ?
Thanks!

 

[AndBreathe]

Can you please explain what 'double redlining' means. @donnellysdogs ?
Thanks!

@donnellysdogs - Does this explain it well?

http://www.neneccg.nhs.uk/resources/uploads/files/Medicines Not Routinely Commissioned.pdf

 

[donnellysdogs]

@donnellysdogs - Does this explain it well?

http://www.neneccg.nhs.uk/resources/uploads/files/Medicines Not Routinely Commissioned.pdf

Yes, I always for some reason add in word of lining... but its not... its when CCGs put limits on drugs and who / when the can be prescibed... called double red for lidocaine in my instance.

I used to be with Nene CCG, and as PPG Chair I asked for a lot of info under the freedom of info act as a whole for the patients in my Practice.

Different CCGs double red different drugs...

Jyst pid £91 for 30days online... so will give the patches a go when they arrive.

Just a shocking amount of money really to have to keep paying out for in total each month.

However, when I consider that we used to pay out £400 a month for our dogs medicines then I have to put it into perspective!! However, nowadays I'm not working!!