Are you on pregabalin or gabapentin for any reason? This may be relevant to you and a GP appointment may be needed.

[PMRpro]

This has just been posted on the Lupus forum:

psnc.org.uk/wp-content/uplo...

[Soraya_PMR]

Thanks, forwarded to my niece who has MS and is on gabapentin.

[Longtimer]

Thanks for that, my nephew burst a disc in his back this week, in agony....doctor prescribed Pregabalin and another drug......will keep an eye on that, now that I know....

[PMRpro Ambassador]

pharmaceutical-journal.com/...

psnc.org.uk/our-news/pregab...

[Hindags in reply to PMRpro]

I always wondered about gabapentin. The dose range for it was very varied and so large. Never trust a medication with such wide dose range. Can't say why I don't. Just don't. Heh.

[CT-5012]

Thank you for the link, our GPs must be on the ball as my son has had a letter about the changes which also limits the amount on each prescription.

[Yellowbluebell]

Thanks for this. Husband has been on this since Jan 2010 as part of a concoction of meds including zomorph to control his pain from broken back and degenerative spinal condition. We can check with our gp and pharmacy.

[Blearyeyed]

Like my life couldn't get anymore complicated.

Pregbalin!

My current prescriptions are all already prescribed on request repeat via the useless pharmacy at our practise and take two days after request.

Reading the details it seems that they already use this system , what do you think?

It's not implying you have to see the GP every month is it!

For General Information, why Pregbalin over Garbepentin based on personal experience and research .

I was swapped from Garbepentin to Pregbalin because it was always recommended by my pain clinic as my option for neuralgia ( trigeminal / occipital ) but my GP chose to leave me on Garbepentin because it is cheaper!

It was only changed last year when I got a record of my clinic letters and found it from back in 2010!!

It took an argument between my Consultant and my GP Practice to forced them to do it!

There is a big reason for taking Pregbalin over Garbepentin for Neuralgia especially if you are on alot of drugs or have gastric issues.

It is virtually the same drug but more effective at lower doses .

It has a third less reports side effects from patients and doctors.

After changing to it and getting used to the change it can cause less dizziness / balance issues because many of these are because of nausea so it's good if you have balance issues or are prone to falls.

It has less impact on the stomach and bowel ( probably the most important reason to take it!)

Garbepentin can increase gastritis , IBS , Constipation , Nausea and Diarrhea in patients .

In a review of both drugs , Pregbalin was recommended for use over Garbepentin for prescribers if patients were being treated for stomach related issues or had these side effects on Garbepentin.

But the Doctors will always choose Garbepentin first because it is much cheaper to give you that and a PPI instead.

Costs over Health again!

Thanks Brains for the info , as obviously my GP hasn't told me anything! xxx

[Yellowbluebell in reply to Blearyeyed]

Interesting because OH has been on gabapentin for years. He has to see our gp soon so will get him to mention it

I panicked at first about how you had to order it but realised we are doing it the required way already.xx

[Blearyeyed in reply to Yellowbluebell]

Unless your GP is very good , the OH is having issues with it , or it gets recommended by a Consultant , especially under the new rules he may have great difficulty changing the medication.

I know my GPs are useless but the articles I have read on it , and guidelines , all steer doctors to prescribe Gabapentin first , and the cost means they are very reluctant to change to Pregbalin unless the really have to .

[Yellowbluebell in reply to Blearyeyed]

We have a good gp but wont expect miracles.

[PMRpro Ambassador in reply to Blearyeyed]

nice.org.uk/guidance/ng46/i...

You can't collect more than a 30 day supply at a time. And I'm not sure about how the script gets from the GP to the pharmacy if it isn't an in-house one. It wll say on the gubmint website

psnc.org.uk/our-news/pregab...

[Blearyeyed in reply to PMRpro]

Sounds like the system in place at my surgery already , except for special arrangements for holiday prescriptions , you have to order in house , and because the have a pharmacy get it from there, and they only usually give you a 28 day count ( they forget some months are longer!!

[PMRpro Ambassador in reply to Blearyeyed]

As far as I can gather it has been known about since January, But I am concerned that not all GPs know - probably because they are rushed off their feet...

I know - 28 day packs are a nightmare when it comes to syncronising medication!!!

[Yellowbluebell in reply to PMRpro]

This is the system we have at ours already. So no change for us necessary.

[polymy in reply to PMRpro]

It’s like Tramadol. Scripts have to be collected from the GP practice and signed for at the pharmacy. The pharmacy can collect the script for you but it can’t be processed electronically.

[piglette]

This is what the BMJ said last week.

From 1 April 2019 pregabalin and gabapentin will be reclassified as class C controlled substances in the UK. The change, announced in October 2018, is expected to prompt a decline in the use of the drugs as prescribing, dispensing, and collecting them becomes more onerous for doctors, pharmacists, and patients.

The reclassification will make it illegal to supply pregabalin and gabapentin through repeat dispensing. Pharmacists will need to dispense the drugs within 28 days of a prescription being written, and doctors will have to hand sign prescriptions, unless a system for electronic prescription of controlled drugs is agreed and rolled out. NHS England sent guidance to GP practices about the changes last month.

After representation from community pharmacy groups it has been decided that pregabalin and gabapentin will be exempt from safe custody regulations, meaning that they will not be required to be kept in controlled drug cabinets.

The reclassification has been prompted by a growing number of deaths associated with misuse of the two drugs ...

[Blearyeyed]

I don't know if GCA itself causes additional nerve pain if you have trigeminal neuralgia.

I know that the inflammation in the area caused by a flare does cause a trigger for more neuralgic pain from both my trigeminal and occipital neuralgia.

Just like other environmental and activity triggers , anything putting pressure on those nerves causes the neuralgia to respond.

Inflammation in the temples , scalp, neck , behind the eyes and ears cause additional neuralgic pain .

It becomes very confusing to know if the pain you are experiencing in a flare is just GCA pain , just neuralgic pain or a combo of both.

I know I used to think TN and ON were the worst pains you could have until having GCA head pain , but then the added neuralgia probably didn't help much either.

And your right , the drugs available don't remove all of the neuralgic pain , neither do the injections , in fact the last option for TN / ON is also steroids and prescription NSAID just like with PMR/ GCA.

I also think that having the types of neuralgia and other inflammation issues I have had over the years were probably early warning signs , or undiagnosed AI issues , and a taste of what was to come.

It's all a pain !😋😁 X

[PMRpro Ambassador in reply to Blearyeyed]

If the blood supply to the nerve is reduced it is likely to cause some form of ischaemic pain - how much will depend on how little oxygen is getting there.

[Cally55]

That explains why my husband had to sign an extra bit of form when collecting my prescription, like he does when it's tramadol. Having avoided recreational drugs all my life the NHS now has me taking 2!!

My GP practice only prescribes 28 days of every drug anyway. Between my 8 meds, my husband's 4 and my daughter in law's 14 we are at the dispensary all the time! Fortunately we are classed as rural patients so can use the in house pharmacy.

[Nellie1965]

Thankyou for this information.Both my daughter and me are on gabapentin.This info is very useful.Again thanks for the info and I hope you are feeling good today.Have a nice day.xx

[MrsJim]

It caused extreme depression and I tried to kill myself while on it. I had no idea it was a side effect until a few years after cessation when I had to return to using it only for the suicidal thoughts to return within days of starting the drug again.

I thought I was suicidal because of my disabilities and that the feeling went because we were trying for a baby not because I’d stopped taking gabapentine. Two years later I had a disc prolapse and had to go back on to gabapentine with disasterous results.

As soon as we removed them from my system again, I never had depression or suicidal thoughts again and that was six years ago now.

My medical records have it as an allergic medication and given the extreme reactions to it I’m not to take it in any dosage or format (pregabalin...) as it has such a high risk to life in my case.

It depletes micronutrients but I had no idea while I was taking it and it leaves your feeling washed out... it did help with nerve pain though and that’s the difficulty when nerve pain is so agonising to manage.

[rocketman42]

I have been on a high dose Gabapentin for 7 years now. I was given it for severe peripheral neuropathy in my hands that is allegedly secondary to spinal cord damage from spinal stenosis. I had spinal surgery to correct the stenosis ( C3-C7 fusion ) but the pain in my hands remained. I often wonder if the pain in my hands was actually from the start of PMR and not from the spinal cord injury. Have tried to taper the Gaba several times but each time the pain became so much worse that I had to up the dose again. Would love to get off of it but can't see how I can do it unless I try changing to an equivalent med such as Lyrica which is basically the same.

The combo of Gaba and prednisone has made weight control extremely challenging.

[PMRpro Ambassador in reply to rocketman42]

I can believe that! Have you succeeded?

[rocketman42 in reply to PMRpro]

I was not watching what I ate since I love food and found it emotionally comforting to eat all the "bad" things I like.

Last week I started to become stricter with my diet and have lost 8 pounds so far. Hope I can find the willpower to keep it up !

[PMRpro Ambassador in reply to rocketman42]

Once you see results it does get easier.