Where to get help??

[KatieRL]

I've been taking Lyria for 10 years as part of my PHN treatment. I've stuck to Lyrica as a change to unbranded pregabalin some years ago made me really ill and I took 6 months to recover. I'm a Lupus patient (SLE) and the disease has made me allergic to this and many other drugs.

Yesterday my GP called and refused point blank to prescribe 'Lyrica' any more, despite my problems. My allergy problems are all in my medical notes, but he is now dismissing them. Of course I got the usual story about how poorly GP's are and was just told 'hard luck'.

I don't have an appointment in my Pain Clinic until August and they don't have an earlier slot at the moment.

I'm just wondering if anyone knows if there are any organisations I can go to for help? I can't be the only one who has been refused medication. Otherwise my only option is to stop the drug completely, although I wouldn't do this without pain clinic help.

Thanks very much xxx

[Northernd]

Do you have a rheumatologist consultant that you see for your lupus? I have gone to gp many times asked for things that he has refused but then gone to my hospital consultant and he has given me.....gp's are general practitioners and in my experience treat everyone the same, your consultant should look into this with a bit more detail and care in my opinion.

Hope this helps

[johnsmith]

This sounds like negligence. Putting aside the issue of whether Lyria is a good drug or not you have been on it for ten years. You are going to get withdrawal symptoms.

AVMA Action against Medical Accidents

avma.org.uk/

is a possible port of call.

NHS England is responsible for a GP’s contract and making sure that GPs carry out the terms of their contracts.

england.nhs.uk/contact-us/c...

Also speak to your local pharmacist, They have a University degree on drugs issues whereas you GP will have had a few lectures on drugs during their medical training.

[KatieRL in reply to johnsmith]

Thanks so much for your suggestions, I’ll definitely follow these up.

[johnadams in reply to johnsmith]

How exactly is it negligent ? It isn't patient centred care, it is cost -

[johnsmith in reply to johnadams]

It is fairly well known that if you have been on a drug for a long time you will get withdrawal symptoms. If the plan is to remove a drug. The proper procedure is taper the drug dosage. This issue will have been discussed in the medical journals that the GP is supposed to read.

AVMA Action against Medical Accidents will more clued up about the law than I am.

[johnadams in reply to johnsmith]

But the GP isn't stopping it. Just not giving the extremely expensive brand, rather the cheaper version. They both contain the same strength of pregabalin. If the GP said no i'm not prescribing pregabalin or lyrica i'd agree that is inappropriate.

[johnsmith in reply to johnadams]

I thought the post said: "Yesterday my GP called and refused point blank to prescribe 'Lyrica' any more, despite my problems."

I get your point that it may mean that the GP is switching to a generic with the same content of drugs. KatieRL can confirm or deny this issue.

[johnadams in reply to johnsmith]

hes refusing to prescribe the branded version. It is unhelpful to the patient, he isn't thinking about his patient - but the powers that be probably are having a go at him.

[Itsallinthehips in reply to johnsmith]

I stopped tramadol after 10 years and 3 years everyday and didn’t have any withdrawals at all. I did it with zomorph as well with no side effects some people don’t

[littlebear]

Hi Katie,

That's awful! 😢

I too am on Lyrica (for a chronic neuropathic pain syndrome which developed from PHN) as I became severely dehydrated with one of the generics as it exacerbated the side effects I experience from duloxetine.

Can you get telephone advice from your pain consultant and/or rheumatologist, or can you ask them to write to your GP to tell them to prescribe lyrica? You could write a letter to your consultant first to explain the situation and your concerns. This will then go on your records and they may then respond by writing to your GP.

Good luck.

Suzanne

[KatieRL in reply to littlebear]

Thanks v much, I’ll definitely write to my Pain Consultant - it is definitely a good idea to get everything down in writing! xx

[firedancer64]

Initially Lyrica was helpful but you had to contend with that floating euphoric feeling. After a few months it lost its effectiveness. Now I’m in the process of being weaned off of Cymbalta as it makes me very lethargic. The only thing I’ve found to truly help my pain is Tramadol through my pain management clinic. Best of luck & gentle hugs my friend 💜

[ArumLily]

My doctor changed my Lyrica to a generic but it didn’t work for me . I rang the surgery and asked to speak the surgery pharmacist . He rang me and I explained that the generic was not working for me and he put me back on Lyrica. See if your surgery has a pharmacist .

The generic Pregabalin is not the same as Lyrica !