Pregabalin and gabapentin to become Class C drugs

[Marina]

This news appeared a couple of days ago, and sounds like it will be bad news for many MSers.

 

“Gabapentinoids are set to become controlled drugs, after a spike in the number of related deaths and series of studies warning about the adverse effects of the medication.”

From:

Pregabalin and gabapentin set to become controlled drugs

http://www.pulsetoday.co.uk/clinical/more-clinical-areas/pain-relief/pregabalin-and-gabapentin-set-to-become-controlled-drugs/20035333.article

 

and

 

“The government has now accepted in principle that pregabalin should be reclassified as a class C controlled substance, which would mean patients could not obtain a repeat prescription.”

“It would mean the drug could not be repeat-dispensed and prescriptions would only be valid for one month.”

From:

Pregabalin, known as 'new valium', to be made class C drug after deaths

https://www.theguardian.com/society/2017/sep/21/pregabalin-new-valium-class-c-drug-deaths

 

How will this affect the many of you who take pregabalin or gabapentin?

[Nick]

Thanks for all the information Marina,

 

Sure does concern me. I have found Pregabilin very useful and better than Gabapentin. I recently tried switching to Duloxitin, and found that very difficult, with me then having to change back to Pregabilin. The other aspect is that I tend to vary the dose, depending on the pain, so my repeat prescription changes. This could make all that more difficult. I'm all for making drugs safe to use and wish I didn't have to use anything, but its clear that we need a better understanding on how to prescribe on long term conditions where the condition is a variable one such as MS. We are supposed to be the experts on our particular condition, and we need the freedom to make some of our own decisions, while at the same time having the proper information about drug safety.

[Scully]

Oh my word....

I swi heed from Gabapentin to Pregabalin a couple of years ago.

Pregabalin was a revelation insomuch that the pain relief from muscle spasm was almost instantaneous.

Side effect was weight gain, so I cut down the pregabalin dose with the GP's help...

Nevertheless, I've tried amitriptilyne and some of this group which had little or no effect...

 

Not sure what I am going to do if it's limited and as far as I can see it can no longer be a repeat script...coupled with the withdrawal of Sativex.....thrown back into pain from muscle spasm....excellent news !!!!! Not.

 

I certainly don't or didn't know that it was used inappropriately or for cutting class A drugs.

 

It's going to be a tough road for a lot of us, me included, if our main pain control med is going to be so difficult to obtain.....

 

Scully

Edited 24 Sep 2017, 5:17 am by Scully

[Downwards]

Well I saw neuro' 2 weeks ago..I told him of my unbearable leg pain..I was almost in tears telling him of the incredible pain I suffer daily..he readily recommended I try Pregabalin..he said he would write to my GP for her to prescribe it to me..GP has had neuro's letter all last week..but never got round to writing a prescription out...anyway I called in to surgery this morning to see if she's acted on my neuro's letter yet..yes she sure has! she's declined to let me have Pregabalin...the agony continues..

Edited 25 Sep 2017, 12:19 pm by Softsqueezy

[Scully]

Hang on a minute...

Neuro says take pregabalin.....and has 'instructed the GP' to prescribe it...

GP has said No.....????

I'm not even sure it's been withdrawn yet, it's just up for discussion!?

 

Ok. Call your MS Nurse and rant to her/ him...

Call your neuro's secretary, or write and let them know the situation.....and, copy the GP in on the letter or email to your neurological team or secretary..

 

Unbelievable !

I suffer crazy leg pain, to the extent that I told the neuro that he could happlify amputate both of them, just to clear the pain...so I do empathise with you on this one...I think it's only the Pregabalin that is stopping me going completely round the twist with leg pain ..

Scully

 

[Marina]

Scully beat me to it about your GP undermining your neuro. On what basis has your GP refused to prescribe it for you? It's definitely not on. If your neuro has prescribed something, your GP should give it to you, it's as simple as that.

 

I agree with Scully that you should contact your neuro and your MS nurse about it.

 

As for the articles I posted about, as Scully says, it's only at the "consultation" stage, which means the reclassification may, or may not, happen. So, at this stage, right now, nothing's yet changed. Even if it does eventually change, there might be allowances for people who are already on repeat scripts, nobody yet knows exactly how this may develop.

Edited 25 Sep 2017, 1:03 pm by Marina

[Downwards]

Thank you for your replies Scully and Marina, rang doctors again and the receptionist said 'didn't know which doctor had refused it or why' she said she would re submit the Neuro's letter to a different doctor to see if they would prescribe the Pregabalin..she obviously did know who'd refused it then... I will go down to doctors again in the morning and if it doesn't get prescribed something will hit the fan..I will do exactly as you say Scully..

 

I know just what you mean about happily considering amputation..the times I've pondered if that would be possible..it really is hell isn't it...

Edited 25 Sep 2017, 2:33 pm by Softsqueezy

[Downwards]

I was at my GPs surgery at 9am this morning..I asked the receptionist if she had a prescription for me...a-gain she said no...so I told her I NEEDED the Pregabalin..and my neurologist said I am to be prescribed it!..she said she would go in to talk to the doctor when she arrived..so I waited..luckily she soon arrived..receptionist went straight in to speak to her..after a good ten mins receptionist appeared with the prescription in hand..just 2 weeks worth of Pregabalin..I have no idea what the problem was..it was all spelled out in the Neurologists letter..there shouldn't have been a problem..but anyway at least I have a few Pregabalin..for now..

 

Fran x

[Marina]

Well, at least you now have some Pregabalin, even if only for a mere 2 weeks! Also, it gives you a chance to see how you get along with it.

 

Maybe they only made the script for 2 weeks as they were under pressure from the receptionist (who was under pressure from you) and didn't have time to find and go over your notes and your neuro's letter in full?

 

Do you have a copy of the neuro's letter? If so, take it with you when you return to the GP for more Pregabalin (on the assumption you'll need it long-term). At least you'll then be armed with it so that the GP can't refuse it.

[Scully]

I am still amazed at this entire scenario. As a consultant trumps a GP every time..

 

And I would still urge you to do the following to maybe avoid any grief in two weeks time.

1. Speak to your MS Nurse as they are the go-between and have access to the neurologists.

2. Compose and email, the secretary may give you her email address. Set out the events, keep to the point, and even mention that you are aware that there is a move to make the drug class c etc..

 

Finally.

When you start Pregabalin, not sure what dose you are on?

You may have some blurred vision and also some fogging thinking....( no change there then)

That was all I had when I started, AND those two things only lasted 2 weeks!

The upside was that regarding pain relief.....it was a complete revelation and pretty much changed my life.

 

Good luck with it, but get those emails and calls made if you can.

 

Scully

x

Edited 26 Sep 2017, 4:34 pm by Scully

[Marina]

and even mention that you are aware that there is a move to make the drug class c etc..

 

I wonder if that's the thing to do at this stage? I tend to think that sometimes it's best to work on a "need to know" basis. At this stage, the GP may not even have the foggiest about the possible reclassification. Or, what if the GP then refuses flat out to prescribe it, without actually yet knowing what the outcome of the consultation will be (and that's if they do know about the possible reclassification)? What if informing the GP about the possible reclassification makes them even more disinclined to prescribe it, even though there’s not yet any legal reason to limit its prescription?

 

I think I’d prefer to wait and see if the GP makes any reference to the reclassification. If they do, then mention you’re aware of it, whilst adding that you’ve been prescribed it by your neuro and that you’re someone who’s not going to be using for drug abusive reasons. Until such time as any reclassification takes place, there’s no reason for a GP to refuse or limit it (for someone with MS at any rate).

 

It would be so much nicer and easier for you, Fran, if it was an understanding GP who knew your history and your MS symptoms and who understood the difficulties MSers have... If that's not or can't be the case, maybe an MS nurse might be more helpful as an intermediary?

[Nick]

Sure is a nightmare! I'm with Marina on thinking that having the knowledge of this possible change, ahead of GP's may be an advantage when it comes to carrying on with Pregabilin. That said my GP recently did try and change my prescription to Duloxitin, something I found didn't work for me, however he was quite happy to change me back onto my original prescription. Question is just how addictive is Pregabilin? I know it works really well for me but I would be only too happy to change onto a 'safer drug'................IF IT WORKS!

 

Nick

[Scully]

Just an update on this topic.

I spoke to my GP at length about this as I take pregabalin and have done for years. Apparently making this a class C drug has been discussed for some time, not just recently.

Implications can be.

1. They can only prescribe it for 1 month at a time.

2. The prescription cannot be electronically transferred to the dispensary, rather has to be collected from the surgery.. ( although there are pilot schemes ongoing for this )

3. Most patients with clearly defined conditions will conintue to access it, albeit one month at a time.

 

He was a little incensed about the prescription not being allowed to be electronically sent to a pharmacy as that is the most secure route.

Anybody, not just the patient can collect the script from the surgery, they don't have to be related in any way. So, conceivably, th script could be handed over to anyone to misuse or pass on....that said, I guess the same is true when collecting from a pharmacy. Although proof of identity for the person collecting it should be asked for.

4. The drug cannot be delivered to the patient from the pharmacy.

5, The drug cannot be used in a weekly 'medibox'.

 

All the above applies IF pregabalin is re-classified....in his opinion, if it happens, it's likely to be a fair way off.

 

Scully

Edited 4 Oct 2017, 10:12 am by Scully

[Marina]

Thanks for the very useful info, Scully!

 

The "If" is a big "if", I guess. If it does happen, it makes it sound like the med is heroin or something... It also makes it sound like GPs aren't to be trusted as to who they prescribe it for. How often is someone, who genuinely needs it, actually going to send someone who doesn't need it to collect it for their own "abuse" reasons? How often does someone steal your paper script before you've had time to hand it over to the chemist (which can be a few feet away in the doctor's surgery anyway)?

[Downwards]

Thanks for your replies Marina, Scully and Nick : )

 

I did ring my MS nurse the day I first got refused the Pregabalin I only got the answering machine I left my details but she never got back to me luckily next day I managed to get the prescription for 2 weeks..I've been on a 25mg dose for 8 days now..and I can barely find the words to convey what a miracle it has been for me..I've had next to no pain!! I can take more if I need it..but feel as I'm doing ok just now I'll hang fire. Going to have to put my repeat in on Friday so to get it for next Tues..see how that goes :-/ if I have any trouble I will go to the clinic where my MS nurse is and see if I can get to see her rather than leave a message. At my surgery all we have is a constant flow of locums so no one really knows me..I was refused Pregabalin a couple of years ago too..it would have been different doctors back then...anyway onwards and upwards.

 

Fran x

[Scully]

Hello Fran,

 

Am so pleased your pain is a bit more under control, especially on a low dose.

Pregabalin was a true revelation for me too, so long may it continue.

 

As an aside, it may be worth contacting your neurologist secretary. Explaining your GP surgery is not happy about prescribing it. The neuro team may well write to the surgery and reinforce the instruction to them....failing that....change your GP surgery ( although I know that so many lists are closed now, due to patient limits being reached )

 

Scully