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I don't know where to start but at this point I am begging for help! I have had severe RLS for many many years. Making a long story short however I have tried gabapentin(did nothing) Ropinarole a lot of years ago and am now on Pramipexole 2mg
I do see a Neurologist and highly rated. I have gained 50lbs since 2019 and can barely walk I am badly overweight! I have read a lot about Pramipexole and weight gain. There is no way my diet supports the weight I have put on.
However when I went to him and told him my worries, he got quite rude and said he highly doubted it was Pramipexole and that it was likely from my anti-depression med. (Venafexaline) I am naturally terrified of Drs so it's been a tough road .
My last neurologist appt. I asked to be weaned off Pramipexole, instead she raised the dose! And told me that I have "pretty much done all I can and she had no ideas left" I am 59 yes old and have HBP I'm really afraid as this weight 8s frightening me. I really want OFF this drug!
You need to find a new neurologist, one who actually understands the treatment of RLS and the side effects of dopamine agonists. This may require travel, but it will be worth it.
First, are there any RLS Foundation Quality Care Clinics somewhat close to you?
What you have said that your neurologist told you has two significant errors. First, there is always something new to try but the next step for you will be an opioid and your doctor either has a personal policy against prescribing this class of meds or else is simply afraid of them. Second, the FDA's maximum recommended dose of pramipexole for treating RLS is 0.5mg. Increasing you above that is a clear indication that she doesn't understand treating RLS as much as you think that she does.
As for the weight, one of the side effects of any dopamine agonist is an Impulse Control Disorder. ICDs can take several forms, such as gambling, shopping or EATING. It sounds like there is a good chance that you have an eating ICD and this is a side effect that warrants getting off of pramipexole as soon as you can.
You face a major battle to get off of pramipexole unless you can get an opioid prescription. You will need to taper down from 2mg to avoid getting DAWS (Dopamine Agonist Withdrawal Syndrome). During both the early stages of the taper and at the end, you will get very little sleep and will have horrible RLS - unless you have an opioid to help cover the withdrawal.
But the good news is that IF you can find a doctor who is familiar with treating augmentation (that is what the pramipexole has caused by having to go to 2mg) and who will willing to prescribe an opioid (any of the Quality Centers will do this), then transitioning from your current high dose of pramipexole to a daily, low dose opioid will be relatively easy.
For any of this to happen, you need to see a neurologist who understands treating augmentation. If you are not able to travel to one of the Quality Centers (this is your best bet), then you will need to get on the phone and start calling around. Start with every local neurologist and then try any medical schools that are "nearby". You need to ask to speak with a nurse and then ask 1) does the doctor have experience with treating augmented and refractory RLS patients, and 2) will the doctor prescribe opioids for the treatment of chronic conditions. The answers to these questions should be very telling.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Oh yes, a person gains weight from pramipexole. I gained 60 pounds.
Also changing from one DA to another plus increasing your dose will not help. It will only increase your RLS to get worse. Augmentation
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I also gained weight. Taking high dose ropinerole (sister drug to pramepexole) and taking Pregabalin which may also increase weight. I gained about 28 pounds over a few years.
With poor sleep and walking about for often 2-3 hours, I could eat a full packet of cookies. Just one after the other. I was so ashamed that I'd hide the wrapping deep in the waste bin. I never ever felt over full. Thankfully 14 of those lbs have now gone.
I am 59 yes old and have HBP I'm really afraid as this weight 8s frightening me. I really want OFF this drug!