I have been to multiple neurologists in India for RLS before and they all prescribed pramipexole as first line treatment. Hearing all the advice here I have my reservations about taking it.
I have also talked to a member here and a few others on Facebook who are in India and they are on ungodly amounts of pramipexole and their symptoms always break through in a few years after increasing their dose.
Hearing such stories, I want to reach out to members here to ask them about providers in India up to date with the most appropriate treatments and who have the capacity to prescribe opioids if necessary. Who are also cautious about prescribing dopamine agonists.
Would appreciate any leads/advice!
Written by
MrCrow
To view profiles and participate in discussions please or .
I wish you luck. We have had a few members posting from India and there have so far been no recommendations for up to date neurologists.It's a worldwide medical scandal.
Even in the USA, where most of the top experts practise, there are still thousands of neurologists who still prescribe dopamine agonists first line,.despite the Mayo Clinic Algorithm and new guidelines from AASM.
Hopefully someone will post with a recommendation.
I talked to my previous neurologist and discussed why they prescribe pram as first line despite augmentation risk. He mentioned that while gabapentinoids and other treatments like dipyridamole are effective, they are not as efficacious as DAs. There are some patients who are able to stay on the same dose of pram for long periods of time or have intermittent RLS i.e. it goes away for periods of time on its own. For most cases pram seems like the best option according to him though he didn't seem opposed to pregaba either.
When asked, my neuro said that he does prescribe opioids for RLS but for short term use only. Usually to help taper off other drugs. He said that taking opioids long term has a worse side effect profile compared to DAs and that's why he prefers them.
I also asked about the dosage and he said that he typically goes up to 1mg Pram before advising taper off. Other DAs can also be tried apparently if Pram doesn't work.
---
I had a conversation with a sufferer from India who said that he goes to the top neuro from the top hospital in the country. They know about augmentation and is in contact with Diego Garcia. Despite that they wont prescribe opioids to this sufferer and numerous attempts to get them from them have failed. The sufferer is trying to visit other states in the country where regulations about the use of opioids are more relaxed. The sufferer is currently on a very high dose of pramipexole and is also taking pregabalin but its not working. Has tried tapering off but even minute dose reduction of 0.0625 mg causes massive symptom flare ups.
Delhi and Punjab are known for drug abuse and maybe that's why there is such strictness about it 🤷?
---
Another conversation with a sufferer from India who is on 0.5 mg pram 2x a day said that he prefers to not take opioids. He has taken tramadol (which is available OTC in a lot of places in India) and while initially effective, he had to quickly keep increasing the doses. Eventually he had to taper off and the withdrawals were far more brutal than those with the DAs. I asked him about the prospect of trying other opioids like buprenorphine but am yet to hear back. Looks like he's very apprehensive now of trying opioids.
I cannot imagine the suffering of someone on 1mg Pramipexole.
The neurologist is correct that Pramipexole works very well-AT FIRST.
Also, so many people are experiencing augmentation but are in complete denial.
I know it well. I was in denial for 4 years on Ropinirole. But I couldn't sit through a car journey or visit the cinema.
Many do well on gabapentinoids. Many do well on opioids.
Dr Winkelman's opioid register has been collecting data on RLS patients for 6 years and is proving that we don't become addicted and we don't develop tolerance.
We can only hope that neurologists worldwide read and follow the latest evidence and research from the USA.
.0625 is not a minute amount. In fact that is what it is recommended to reduce by every 2 weeks. He can 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 he can reduce by that amount every 2 weeks.
And pregabalin won't work much if at all while he is on pramipexole.
You mention that tramadol is available in many places over the counter in India. A post by ID158 two days ago asked for responses about Tramadol Regimen and there were a number of replies from members who are successfully using tramadol for RLS, some for many years.
Certainly a good option for the short term. But we don't know the long term effects. Certain studies show augmentation. Long term studies about the rates of augmentation are in progress.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I need your advice
Pramipexole
LDN (low dose naltrexone)
Restless Legs - changing treatment.
Blacklisting of RLS drugs in the UK: result of contact with my MP.
