Tingling

[tuckerdog109]

My issue is maddening tingling in my fingers and toes. I’m taking Pramipexole and it’s about 40% effective. Have tried Gabopentin, Ropenipol to no avail. I’m pretty sure my lousy sleep patterns aggravate the tingling. I typically get 0-3 hours sleep a night. Thouhts??

[SueJohnson]

You're suffering from augmentation and you need to come off it. You mentioned you wanted to come off it and I gave you some advice as to how to do this. Are you doing this?

[tuckerdog109 in reply to SueJohnson]

what’s does augmentation mean?

[SueJohnson in reply to tuckerdog109]

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[Joolsg in reply to tuckerdog109]

rls.org/treatment/managing-...

Ropinirole and Pramipexole actually increase the severity of RLS. They are no longer prescribed by experts because augmentation is so common and so serious.

[Baldrick123 in reply to Joolsg]

NHS is terrible. I was put on Ropinirole about 20 years ago. Hardly works at all now and when I last saw an NHS neurologist he just said it was the best they could do and he couldn't wave a magic wand! Useless.

[Joolsg in reply to Baldrick123]

I agree. There is a lot they can do if they cared enough about patients and researched.If you've been on Ropinirole 20 years you will DEFINITELY be suffering drug induced worsening ( augmentation). Your neurologist is negligent. Please consider reporting him and file a drug side effect via Yellow Card Scheme.

Please see your GP and show him/her the RLS UK website, particularly augmentation and treatment.

You should get full panel iron blood tests as per NHS guidance and increase serum ferritin above 100.

If you're still on Ropinirole, first split the dose. Take half 3 hours before bed, the other half an hour before bed. Then slowly start reducing by 0.25mg every 2 weeks. It's really hellish but once off Ropinirole, your RLS will actually improve.

You will need to start replacement meds about 3 weeks before your last dose of Ropinirole. Pregabalin is now first line treatment.

Join rls.uk and attend the AGM.

There are so many of us who have ignored our useless GPs and neurologists and researched treatment. We are now in a much better position.

There are a few neurologists who know more than the basics, but not many.

Buprenorphine and methadone are used more often among experts.

Look at Dr Berkowski's website and listen to his webcasts.

relacshealth.com/

[tuckerdog109]

Thanks

[SueJohnson in reply to tuckerdog109]

It's been awhile since I gave you the advice on coming off it. Do you want me to give it to you again?

[SueJohnson]

Did you ever have your ferritin checked?

[tuckerdog109]

No. I plan to do it this week

[sigurdur]

Coming off this is a living hell. I am down to zero this week but I have lost my will to live a few times during this journey. Luckily kratom was recommended to me here in the forum, and it reallyhelped me even though I have been a bit clumsy with how much to take. In correct doses it numbs the agony. Good luck. Anyone who has completed this, I feel is my war buddy.

[Birdland in reply to sigurdur]

War buddies is correct. My withdrawal was surely a living hell. And the extreme depression for years following………. Ugh. I feel I’ve finally reached the other side. Had to be done though!

[Joolsg in reply to Birdland]

See my reply to Sigurdur. Report augmentation and withdrawal via FDA.I reported via UK yellow card scheme AND FDA.

We have to make doctors realise what trauma these drugs cause.

[WideBody in reply to Joolsg]

100 percent agree, this is madness. I see this stuff everyday. It needs to change!

[Hidden in reply to WideBody]

Individuals reporting adverse effects to the relevant authority makes a huge difference but sadly many people with good intentions don't take the crucial step of doing so.

[WideBody in reply to Hidden]

where do we report it in the U.S.?

[Hidden in reply to WideBody]

I'm in Australia and reported it to the Therapeutic Goods Administration.

It looks like the Food and Drug Administration is the US equivalent. Its website states:

When side effects do occur, you are encouraged to report them to FDA’s MedWatch, a program for reporting serious problems with human medical products including drugs.

accessdata.fda.gov/scripts/...

[WideBody in reply to Hidden]

thanks! I’m on it! I will let everyone know if this works!

[Retiredlady in reply to Hidden]

Thanks for that info Amrob.I’m in Melbourne Australia too and will definitely report my experience with sifrol to the Therapeutic Goods Administration .

[Joolsg in reply to WideBody]

FDA adverse drug reporting. Even though I'm in UK, I reported via Yellow Card Scheme in UK AND the FDA.open.fda.gov/data/faers/

[Birdland in reply to Joolsg]

Thanks for the prompt Joolsg. I will definitely do that! We have to speak up.

[Embroiderer]

have you been investigated for other causes of tingling such as a peripheral neuropathy?

[tuckerdog109 in reply to Embroiderer]

Yes. I was diagnosed with peripheral neuropathy

[Embroiderer]

Did they find another cause for the peripheral neuropathy such as diabetes, B12 deficiency etc? It may be nothing to do with the Pramipexole.

[tuckerdog109]

Found no causes. All they could say is that the nerve sheathing had thinned and was overly sensitive .

[Joolsg]

Join rls.org. Look at Dr Berkowski's website.

Lightbulb moment when you realise Ropinirole and Pramipexole make RLS so much worse than before you started them..

Gabapentin won't do anything until you're through withdrawal from Pramipexole. Read all SueJohnson replies and it advises how to get off Pramipexole.

You'll need a good doctor who knows about the Mayo algorithm.

Educate yourself by reading all posts and replies from last few weeks on here. Join rls.org and read up on the latest treatments.

Look at Andy Berkowski website at Relacs and watch his webcasts.

relacshealth.com/

[tuckerdog109 in reply to Joolsg]

Thanks