Health Organization for Pudendal Education

Anyone offer any help or advice. I've had two rounds of pulsed radiofrequency PN injections privately that were really successful and enabled me to be virtually pain free for up to 8months. The last one started wearing off begin July, I decided to try some more drug options as I've only ever taken codeine to control the pain, purchased over the counter, as no-one has ever prescribed me anything else. This was just to explore all of the options and I'm also starting to get worried my insurer might start thinking about kicking me out soon. I'm hoping I can manage on one injection a year. I'm seeing Dr baranowski, who wrote me a prescription for pregabalin suggesting 75mg / day to start and mentioned it was on the NICE guidelines for neuropathic pain. My GP practice refused to prescribe it just wrote gabapentin on the script anyway without even mentioning it. I tried it and the side effects were awful, I lasted 4 days the highest dose I tried was 600mg, I couldn't keep awake or stand up as I had no balance and couldn't drive to work. To be honest the pain was preferable. Since that all went a bit wrong, I decided to have another PRF injection which I had 2 weeks ago, having a bit of a flare at present (struggling a bit on codeine) but this is usual after the PRF I've had before (lasts up to 3 weeks) but touch wood I'm hoping for a really good outcome again. If I can last a year between injections I would be really happy. I'm keen to try pregabalin but the GP practice nurse said it was on there "double red" prescribing list and they get told off if they prescribe it. I'm not sure if this is a "national" decree or the local PCT's descision or the fact I'm seeing the consultant privately not helping. I'm not keen to switch to seeing dr baranowski on the nhs unless as a total last resort as the waiting lists are really long and that's assuming my GP will refer me as I'm well outside of the London area. I was thinking about puting in a funding request to the PCT and I'm guessing this might take months to sort out. Not liking the thought of having to turn myself into some sort of special case either.
Anyone had the same problem getting pregabalin on prescription or is it just me ?
Jenny

I think that your difficulties with getting a prescription with pregabalin - it is very expensive - may be simply because you haven't tried any of the cheaper alternatives first, and of course GPs have a budget.

The 'double red' is there because it is so pricy. Prescribing something so costly needs to be justified, that's how the reasoning goes. It is not likely to be some edict from the PCT, more likely the practice has it highlighted - along with most other practices nationwide. I know that it is flagged double-red at my GP surgery.

I can show you the Analgesic Ladder for Neuropathic Pain from my pain clinic - link here. I am on pregabalin at the moment, all my treatment is through the NHS.

If you have not yet tried amitriptyline, then this is very definitely worth a shot, lots of people get excellent pain relief with this. Usual maximum dose for pain relief is 50mg but don't jump in at that dose or you will feel like a zombie. Start with 10mg and take it up. I found that the side effects were a bit much with amitriptyline, tried nortriptyline instead and that was much better. (I'm actually re-starting this stuff this evening, I'm having a few problems with the side effects of the pregabalin so I'm taking that down a bit, and adding the nortriptyline back in.)

Gabapentin, they did insist that I gave it a good try. I gave it one try at 300mg (per the first dosing schedule) and came off it quite fast, I had real difficulties with the side effects. But they wanted me to get it up to 1800mg and keep it there for 2 weeks - well, I did this, it took 18 weeks to get up to that dose. I was getting some pain relief at that level, and I'm sure that if I took the dose up higher then I'd have got more. But for me, the cost/benefit of side effects vs pain relief just didn't work out. I was very glad to get my brain back again afterwards, I can tell you. By the way, I strongly recommend taking the dose up slowly, 100mg a week. The dosing schedule is on that pain clinic link. I am not surprised you couldn't stand up if you were at 600mg after 4 days. It took me 6 weeks to get to that point.

Tramadol is also worth a try, although it is not really for long term unless nothing else helps. It has more effect on neuropathic pain than codeine. If you've only been taking OTC stuff, then this is quite a difference. If you try it, you want the slow release stuff that you only take every 12 hours - reason, much better at keeping the pain damped down because the medication stays more level in your bloodstream. Also, much easier to stop taking it, when you want to. I was taking 400mg SR, which did work quite well actually. But the GP was not happy with me staying on it. I am still taking 50mg SR in the evening as that keeps the PGAD out of the way.

After I had given gabapentin a good try, my GP was entirely happy to prescribe pregabalin. I've been on it for a few months now, we have taken it up to 2 x 100mg daily and I've been getting pretty good pain relief although still with substantial breakthrough pain every day, I need a higher dose really - but am feeling rather spaced and weird at the moment, hard to describe but I don't feel right at all. So we are taking the dose down to 2 x 75mg and adding the nortriptyline back in, and seeing how that goes.

I think that if you are willing to try some other things first, you should find your GP being more helpful.

And I do hope that some pain relief from the PRF kicks in soon!

Hi Calluna,
Thanks very much for the e-mail with all the advice I really appreciate it. Your GP sounds amazing and tragically that is something I really don't have access to. I've seen 3 different GP's at my practice and none of them seem to have much experience or knowledge with pain management at all. If I recall my 3 last experiences seeing them before I was properly diagnosed when the pain was horrendous, I got prescribed mefamic acid (and climbing up the walls with 1hr) and the other one told me I need to try an anti-spasmodic and to eat more fibre. Re the gabapentin I was told by the receptionist to follow the prescription the GP wrote which was 300mg 1st day 600mg 2nd day (1 morning and evening) and 900mg the third day (1 tablet three times a day) the pharmacist also said 300mg was the lowest dose they did. I have very little knowledge of the other drug based options as I have just gone on the advice of what Dr baranowski has recommended and thankfully he seems to know what he is talking about. I feel like I'm hitting a brick wall sometimes as what he prescribes they are funny about but don't help me with any alternatives or suggestions. Better make an appointment at some point, unless I sit on the phone at 8am for ages when I should be on my way to work I can't get in or I can book an appointment online but this usually means a 4-5 week wait, hence why I also avoid the place like the plague !!! No wonder I struggled on the gabapentin dose when I saw the schedule recommended on your pain clinic website !!
thanks
Jenny

Goodness, not a good situation!

I know that I've been very lucky with my GP, everyone who has been involved has been nothing but helpful and supportive. Mind you, my diagnosis was very clear, right from the start. And although most GPs haven't encountered PN before, they will definitely have encountered neuropathic pain before and should have some idea how to manage it.

Anyway, I do hope that the pain clinic link is going to be helpful to you - there is a whole stack of useful info on that site if you have a wander around, including some useful leaflets to download. I keep referring my GP to that site actually, or at least mentioning it.

Yesterday, for instance, he wanted me to start the nortriptyline at 25 mg, I said, no, the pain clinic likes me to start at 10mg for the first week and then take it up - he said, ok fine we'll do it like that then. The nortriptyline is definitely helping me already, and it is very good to have something which is already running full strength first thing in the morning - BM, don't you know! I have taken the pregabalin down to 75mg this morning (from 100mg) and to be honest, right now I am feeling better than with 100mg pregabalin yesterday. So this looks good. Maybe I will be able to take the pregabalin down further still in a couple of weeks, my GP will be happy about that!

Mefenamic acid, that's an anti-inflammatory whic they use for menstrual pain quite a lot. There is a substantial percentage of people with PN who get some relief with anti-inflammatory meds - I'm not one of them, unfortunately, and it looks like you aren't either - but that wasn't altogether a bad call. And the other one thought you had IBS...... wrong.....

I am not kidding with the gabapentin, if I'd taken it as you were told to, I'd have been asleep 24/7 I think. I think he was using a timetable that would be appropriate for someone needing it to stop seizures - the priority would be to get the dose up to an effective level as fast as possible. With us, different priorities.

Re your pharmacist only having 300s in stock - well, that will be because the GP only prescribes it that way at the moment. I can assure you that 100s are available for him to order in. Don't discount this med yet, for lots of people it works really well. And if you take it up at a more normal progression, then maybe it will be fine for you too.

I'd suggest that you see if you can start with trying either amitriptyline or nortriptyline. Maybe tell him you've got a friend with the same diagnosis who has found it helpful. Lots of friends, actually! They like to try the amitrip first because, as my GP said, it is 'cheap as chips' - and lots of people take it with no problems at all, and at much higher doses than we need for pain relief. Nortrip has less side effects in general but costs a bit more. Whichever you have, take it up slowly though, as per the link. And take it at the end of the day, not in the morning. Wait til the side effects settle before you take the dose up to the next step.

And if you need more help after that, keep the amitrip or nortrip running, and add in gabapentin starting at 100mg and going up s-l-o-w-l-y...!

Hope this helps a bit, and hope you have a better day today as well!

Calluna is our drug guru so clever. Just to let you know Jenny, that you are not alone, my practice refuse to prescribe pregabalin too. I asked if it was a cost issue and was told no. . . . BUT it has to be.
I was taking gabapentin and once I'd adjusted to being significantly less 'on the ball' I was fine(ish) with it . Strangely I was given the same dose as you too but I don't work so maybe managed to adjust over a longer timescale.( do you live around the corner from me? )
Anyway,I had a botox injection and decided to stop taking it to see how the botox was working (seeemed like a good idea at the time) and experienced awful withdrawl even though I did it slowly. It was an experience I wouldn't want to repeat as the drug didn't bring my pain down a significant amount to justify taking it when it took over 2 months of just feeling dreadful (flu like, sweats, nasty) coming off it. Obviously everyone is different , I didn't have too much trouble adjusting to it in the beginning for instance .
Dr Greenslade prescribed pregabalin for me but I have been told that it is EXACTLY the same as gabapentin, so I have to have that ! as a practice they will not prescribe pregabalin
I do take tramadol but find it dreadfully constipating so only if I have to. (I am a bit of a whimp in that I hate any diluted, fizz/movicol YAK!)
I take cymbalta too which I think does help.
Maybe your dr will come round to Dr B's way of thinking but at least you have a few other options if not.

jenny, sorry to hear that your going through a bit of a dip at the moment. The only thing I can advise is get your GP to refer to a neurologist, and explain PN to the neurologist completely. get him to write to your GP mentioning that the next step would be a referral to a PN specialist. That's the route I took. When my GP received the letter from my neurologist encouraging referral out of area, my gp was immediately persuaded. As it happens my symptoms seem to be very much under control at the moment and I have not pursued further treatment. but, its nice to know that my GP is on board should I want an out of area referral.

Hi Helen,
Thanks very much for the info re your experiences both with pregabalin (not getting it) and gabapentin. I was a bit bothered after reading a few people with withdrawal issues with gabapentin online, but I haven't seen this get mentioned often. I'm very wary of getting dependent on any medication particularly as my symptoms can be very intermittant especially now I know what activities to avoid i.e not to do 18mile cycle rides like I used to I'm a bit unsure about what the situation with pregabalin is as I have a close friend at work who as bad back problems and chronic pain due to serious discs issues and when her consultant recommended it she got it from her GP no problem. She lives about 5 miles up the road from me but in another county which probably explains it. Don't think she has tried some of the other drugs calluna mentioned. She also had a quite a negative experience on gabapentin so is considering surgery at the moment. It's nice to have someone else to chat to with some experience of pain.

Touch wood PRF injection seems to be settling in really well now and the flare up is passing. The injections aren't pleasant to go through but they seem to be a whole lot easier to deal with and side - effect free compared to the some of the drugs options so I'm definitely sticking with them for now, as long as they remain an option. Hope I've got some good pain-free months to come and BUPA look kindly on for a few more years !!
Jenny

Hi Spike,
Thanks for the tips regarding the referral if required. Good to have a Plan B up my sleeve if / when it's required.
Jenny

I spoke to my nephew's girlfriend (a GP) who told me that pregabalin is further up a 'national list of drugs' recommended for neuropathic pain and gabapentin lower down the list,
BUT her PCT sent a message advising Dr's to prescribe gabapentin rather than pregabalin. Obviously other PCT's have done the same. It's all to do with cost of course.
So glad the injection is effective and the flare has subsided Jenny, how I miss my lovely BUPA .

I have just written 300 words of importance and then was told I need to login but I did and now my work has gone