Where to from here???
After being on Pramipexole for too many years I have reached the highest daily dose of which I take at night only. Now I need day time relief too. My doctor asked me yesterday " Where do we go from here, do you have any medications you have been researching?
NO. I have no ideas at all..
We both decided opioids is only to be used much later if at all. What am I to do now? I have no clues to what RLS specialist practitioners are giving their patients.
So I thought I would ask the best people for the job... you. I would love to know what drugs & daily doses people are finding effective. thank you so much. xx
I’ve had RLS for 33 years. For the first 10 years it wasn’t horrible. Then I was actually diagnosed due to increasing symptoms. I was put on Pramipexole. Fast forward 23 years -several neurologists later, I found one who thought he could help. He had me do a sleep study that indicated I have mild sleep apnea. I disagreed but tried the newest CPAP. I slept worse because of the machine. In consultation with him I asked about side effects, especially augmentation. He dismissed my question saying, “Not at your dose - that’s only an effect Parkinson’s patients have.” At that point I was taking .5mg 3-5 times in 24 hours. I did my own research and deduced he was mistaken. At Easter, 2023 my legs hurt so badly I left church saying this was ridiculous. I took myself off the medicine, had 2 pretty bad days, and then my symptoms were reduced to such a great degree it felt like a miracle. They became slightly stronger after a few months and have now stabilized. I’m working on my sleep hygiene (33 yrs of RLS creates a lot of bad habits) and now take 300 mg’s of Gabapentin every night. Moral of my story: even dr’s who know Pramipexole causes augmentation in one disorder dismiss it for another disorder. I had some severe side effects (an impulse disorder) which disappeared with a week of stopping the med, and have not returned. We have to do our own research and then find a dr who will listen.
Thank goodness you advocated for yourself and did your own research,
. I am thrilled to hear you are doing so much bettter. Thanks for sharing your experience. Such great insight! Wishing you the best. - Lori (Team Member)
I’m in the same spot. I’ve been on pramipexole for 15 years. I’m a 61 year old female. I’ve read that HRT AND menopause can exacerbate RLS?? Anyway, I recently started HRT and my RLS got worse. 2 days ago I asked my PCM to prescribe gabapentin. She did and I started talking 200mg an hour before bed, in addition to the .50mg pramipexole I already take at 2pm every day (and .25mg at bedtime). I’ve slept 5 hours straight for 2 nights now and have felt good when I wake up. We will see.
I was afraid to try gabapentin Enacarbil(a time released capsule), because I did not want to be feeling “cloudy” during the day. But, that’s my next step, if need be.Hi
. I am glad to hear gabapentin is helping. Many people do experience drowsiness from daytime doses of gabapentin, but I am always surprised to hear that some people are not affected at all. If you do have to take Enacarbil, I hope you are one of those people. Best wishes. - Lori (Team Member)
Dear molly..can u pls try this for few days and i am sure u will not need premipexole..make normal tea with lots of freshly grated ginger and bi sugar...drink this one hour before u go to bed..notice the difference and pls let me knoe
I take an over the counter Hylands Restful legs PM and the daytime version in the afternoon. It has been great so far in addition to Ropinirole.
I am sorry you have reached your limit with Pramipexole and need to change to a different medication.
I recently switched from Pramipexole to Pregabalin, so far so good. I had been experiencing daytime symptoms on Pram but thankfully the Pregab has put a stop to that. I also have found I am more sleepy at bedtime cause of Pregab.
I hope Alyssa's links help you and your doctor come up with a plan of attack. Please update us if you feel comfortable doing so.
🥄🦄 Ray (Team member)
