Asha and Chewie

[ChewieandAsha]

I was taking Pramipexole for over 20 years with no warning of what it would do to my bank account with all the over spending I did. When I tried to come off it my Dr just took me straight off it much to my pain and suffering, needless to say I had to go back on it and am now trying to withdraw from it slowly. I was taking 250mgx3 daily am down to 125mgx3 daily but cannot seem to go any further .Can anyone help me? The Dr has started me on Lyrica 150mg x2 at night much to my chemists disgust.

[SueJohnson]

Get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

[Joolsg]

Please remember to report the Impulse Control Disorder via FDA side effects AND UK yellow card scheme. Unless we do this, feckless doctors will continue to prescribe dopamine agonists and destroy other people's lives.Also consult a lawyer as failure to warn about gambling, spending, overeating, hypersexuality etc is negligence and you can recover the money you spent from the doctor ( his insurance will cover it).

I normally would never recommend suing doctors, but until more of us take action, they will keep prescribing dopamine agonists.

[ChewieandAsha in reply to Joolsg]

Hi Joolsg ,thanks for replying if I could remember which Doctor prescribed the drug I would take action but it is all so long ago I will just have to bare it .

[SueJohnson]

Also you have come down way too fast to where you are since you came off it 7/25. You may find just reducing as I advised you by .125 every 2 weeks and waiting for the symptoms to settle would be enough.

300 mg pregabalin is a lot to start off with and won't do you much good anyway until you are off the pramipexole and your symptoms have settled. I would suggest you only take one tablet and once you are off pramipexole and your symptoms have settled, ask for 25 mg tablets and increase by that amount every 2 days. You don't want to take more than you need.

[Wordsworth99]

Hi ChewieandAsha, any idea why your Chemist was disgusted about your Lyrica prescription?

I wish you all the best with your Pramipexol tapering. I didn’t find it too difficult, but I did it very slowly over a period of about 9 months and I used tramadol when needed.

[amrob123 in reply to Wordsworth99]

I have taken pregabalin (Lyrica) for nearly a decade. I have seen various doctors in that time (for reasons unrelated to my PLMD). Some of them have been surprisingly anti pregabalin, with one saying "it's a dirty drug" and others saying "I never prescribe it". When i saw an integrative doctor some years ago, he said "get off it whatever you do".

Even a GP that i saw two weeks ago said that he sees so many people experiencing depression on it, that he no longer prescribes it.

I understand the problems with dopamine agonists but unfortunately on this forum, people seem all too keen to recommend gabapentinoids without understanding that they too have a huge downside. Especially the longer one is on them, and the higher the dose taken.

[teakabeagle in reply to amrob123]

I had severe depression on Gabapentin, and again after withdrawal from Pramipexole that finally responded to rTMS/ TBS. It also improved the RLS about 30%. ( the TBS apparently does reach the motor area for the legs). A few times a week I don’t need the Buprenorphine It has only been 2 months since completing the series and so far so good.

[Wordsworth99 in reply to amrob123]

Thanks Amrob. Perhaps those who recommend gabapentinoids to others should also advise people that they have a downside and either explain what that is or advise people to do their own research on the pros and cons. That goes without saying for some people (they will always research a new medication before trying it) but I fear that some people won’t bother because they believe it must be “ok” if someone on this forum advised them to get it.

This is perhaps ultimately a downfall of this forum (though mostly this forum is great!). Sometimes, instead of writing about their experiences, or advising others about helpful research they have discovered, some people are telling others what to do in a manner that seems prescriptive, like a healthcare provider would do. However unlike a (good) healthcare provider, they don’t explain the potential side effects. I guess that is what would happen when they go to their GP/neurologist to ask for the medication, however that doesn’t always happen either.

At the end of the day, masses of people are taking medications without fully understanding what they are taking.

[amrob123 in reply to Wordsworth99]

I couldn't agree more Wordsworth99.

[Munroist in reply to Wordsworth99]

I recognise some of what you mean when you say some of the advice is prescriptive but I feel that on the whole the advice is consistent, concise, clear, practical and for many people gives them clear picture of the options when they are struggling with understanding their condition. Many have been trusting GPs and others who have prescribed them with medications without a full understanding of the side effects and the advice here is more balanced and I believe more up to date and relevant. I have to say many, many people including myself, and Amrob123 above do convey our personal experiences with the various drugs and medications which if you read the forum regularly helps to build an understanding of our many different responses to the drugs and treatments and to come to their own conclusions about what's best for them.

Side effects are frequently mentioned which is absolutely right, but not everyone will experience the same side effects, if any, and even if experienced may be better than suffering with chronic lack of sleep and fatigue. While I believe the forum absolutely does its best to read and understand people's posts and their individual situations it's not always easy to give perfect advice or to anticipate exactly how everyone will react, nor to think of everything for a particular individual. Ultimately people are responsible for their own health and whether to accept the advice and experiences offered here. However it's very important that we all continue to offer our views and understandings and learn from each other so I appreciate your perspective and we would all do well to keep it in mind.

[Suesh]

Your chemist’s disgust? Sounds like he/she has no concept of how financial ruin feels. I was also on Pramipexole for around 20 years but had to get off it after I realised that if I didn’t my bank account would be zero. My estimated losses/incurred debt - just for the easy to calculate things - has been nearly $400,000. I weaned myself off by reducing the dose every 3 days and then went straight on to Lyrica 75mg x 2. It’s been a godsend. Stay away from any alcohol and also antihistamines…

[KPPA]

Hi. I feel for you. After 8 years I have just weaned myself off Sifrol (Gabapentin). Years of gambling addiction that I was never warned about. Now off it I have no desire. I have a post on here as to how I am now managing RLS symptoms and its working well. All the best x