Pregabalin

[sparkey1958]

I just read an article in "Nightwalker" RLS Publication by Dr. Winkleman and he spoke about symptoms from being on pregabalin......weight gain, fluid retention, cognitive fuzziness and maybe mood disorder. I'm on 300mg and 2mg ropinirole. I'm having these symptoms and for too long now still experiencing RLS every night....I'm beginning to think.....why take this stuff if it's not helping???

[Hidden]

I think you are quite right, if the side effects of a medicine outweigh the benefits, then there seems little point in taking it.

There is a problem that you're also taking ropinirole and it's possible that this is making your RLS worse i.e. augmentation. In which case the pregabalin may have limited effectiveness.

I believe Dr Winkleman is a supporter of iron therapy for RLS.

The third option for RLS when "first line" treatments fail, is an opioid.

[sparkey1958 in reply to Hidden]

Thank you Manerva.....I actually saw Dr Winkleman 2 years ago. Unfortunately it was about 6 months before I could get an appointment. I had had an awful time with augmentation happening when I had 2 hip replacements! I was on 6 mg ropinirole, zolpidem and the pregabalin when I saw him. I spent months slowly taking away the ropinirole. He said to also stop the zolpidem. I got myself down to 2 mg ropinirole....so presently on that and pregabalin. I've been on pregabalin for over 2 years. Wouldn't I have noticed these symptoms before now?? they probably sneak up on you slowly

🤫

[Hidden in reply to sparkey1958]

If you've been on pregabalin for 2 years, I would have expected you to have the side effects earlier.

However have you been on 300mg all that time?

[sparkey1958 in reply to Hidden]

Yes I believe so

[Joolsg]

I also read the article. I think the first thing you need to do is get off the Ropinirole completely. Until then you won’t know whether pregabalin is really helping or hindering.

Reduce 0.25mg every 2 weeks and you should be off the Ropinirole in 3 months. If the symptoms flare up too much, reduce more slowly- 0.25mg every 4weeks.

If the pregabalin still not helping then, switch to a low dose opioid.

[sparkey1958 in reply to Joolsg]

Thank you Joolsg......your name is a familiar one to me and I appreciate your advice. I knew I should be off the ropinirole but after experiencing augmentation once I certainly do not want to go through that again. I have a new practitioner who I've only seen a couple of times ....I haven't even approached her as I have a feeling it might be something she doesn't come upon often. Do you think it would be ok to be in touch with Dr Winkleman after 2 years?? At my visit there was also a Dr. Lee Sullivan who I might also contact.

[Joolsg in reply to sparkey1958]

Definitely as you’ve seen him before. However I know he’s very busy and is doing telemedicine appointments at the moment.

I know how hellish getting off Ropinirole is- been there, done that & worn the TShirt. I survived withdrawal just!

However- the intensity of the RLS is much reduced and I only get it at night and in my legs now.

He would definitely prescribe low dose opioids- I’m not sure you’ll find another doctor who will prescribe them.

Let us know how it goes.

[sparkey1958 in reply to Joolsg]

Again...I thank you for your replies and encouragement and will keep you posted......didn't know there was such a t'shirt🤬😀

[sparkey1958 in reply to Joolsg]

I meant to include the smiley face but not that red, mad face....my arthritic fingers sometimes make mistakes!

[Joolsg in reply to sparkey1958]

😂

[martino]

I too found the piece very interesting. I have been attending a pre diabetes course as I am not quite tall enough for my weight. I exercise and eat a fat free diet so why I had weight I didn’t need was a puzzle. We have suspected Pregabelin so having evidence of the culprit was very interesting. RLS has been well controlled with my cocktail of meds but it has been waking me a little earlier.

[sparkey1958 in reply to martino]

Hi Martino,.......good to hear more responses . So may I ask what your cocktail is......?

[martino in reply to sparkey1958]

With pleasure. I have 600mg of Pregabelin, a daily 2mg Neupro patch and 200mg ofTramulief. It looks a lot but I also have some sort of Peripheral Neuropathy. I have a phone conversation with a neurologist in a couple of weeks time and I will say that despite all the meds my legs are getting restless again. Back to the drawing board!

[Pagan707]

Pregablin didn’t work for me. I gave it six months of feeling unwell and stopped it. Was changed to duluxotine but I don’t feel any benefits from it but no side effects either. The Neupro patches and diazepam seem to work best for me.

[WideBody]

I was on Ropinirole, augmentation is hell, you have my deepest sympathies. There is still a bit to go and to be honest it took a least a year for my head to clear from the DA drugs.

I am now on 300 mg of pregabalin. I am not experiencing those side affects. I did find pregabalin more effective and consistent than Gabapentin.

Hang in there, it gets better.