New Member seeking help with meds for RLS

[KoolKestrel]

This is my first post. Thanks to the person who welcomed me to submit any questions I might have. I have done my best to read through previous posts and will try not to be redundant.

For background, I was referred to a prominent and well-regarded Pulmonologist because I was diagnosed with severe sleep apnea in Aug. 2024. I am on CPAP therapy and was told I must see the doctor for reasons of compliance. While at the visit, I mentioned my restless leg symptoms. The doctor immediately said, "There is a medication for that!" He gave me a prescription for Pramipexole .25 mg, and I began taking it on Oct. 10. The relief I felt from taking the drug was immediate.

Then I began doing research on RLS. What I learned about Pramipexole and augmentation caused me to doubt the wisdom of continuing to take it. At my most recent visit with the Pulmonologist a month ago, I mentioned research and studies that recommend not taking Pramipexole and asked to switch to something else. He said that I would not augment on such a low dose. In fact, he recommended that I increase the nightly dose to .375. When I questioned him on other possible drugs for RLS, he listed all of them, seemed frustrated with me for asking, and would not recommend one. He also said my iron levels were "normal" even though Ferritin was 29 (low), Transferrin was 375 9 (high), and TIBC was 474 (high).

Subsequently, I went to my PCP who diagnosed me with iron deficiency without anemia and started me on oral iron--3 months before I can qualify for IV iron because of insurance. But I am still on Pramipexole. My PCP does not want me taking Gabapentin at my age (68) because of side effects (dizziness, fatigue).

So, my questions are:
1. Is augmentation still possible on Pramipexole .25mg?
2. How do I address my concerns about Pramipexole with the Pulmonary doctor who prescribed the Pramipexole? Or should I just try to go through my PCP?
3. If my PCP doesn't want me to take Gabapentin, would Gabapentin enacarbil or Pregabalin possibly have fewer side effects?
4. Once I am cleared for IV iron, is it possible it could "cure" my RLS and I could just drop the Pramipexole without having to start a new medication?

Thanks in advance for any comments, encouragement or advice.

[Rustsmith]

Since we are not doctors, we can only try to steer you in the right directions.

1. Is augmentation still possible? Absolutely, especially with iron levels as low as yours are. If your ferritin level gets over 75, it could take months or years to augment - if you are lucky. However, one of our moderators augmented at that level in just two days. As a point of reference with respect to the suggestion to increase to 0.375, the FDA max recommended dose for treating RLS is 0.50 but is higher for Parkinsons. Most doctors only see the higher Parkinsons value and think that applies to us as well.
2. You have to judge the personality as well as your relationship with your Pulmonologist. Some doctors are willing to listen to input from patients and others expect us to blindly follow what they advise. Since your Pulmonologist is practicing in the area of sleep medicine, you might try sharing this recent publication that specifically recommends against using pramipexole except in unusual situations or after failing gabapentin/pregabalin. When you share it with your doctor, point out that this was published just six months ago, so (s)he would have good reason not to have seen it yet. That way, you give your doctor an easy excuse https://jcsm.aasm.org/doi/10.5664/jcsm.11390
3. If your PCP doesn't want you to take gabapentin, pregabalin and Horizant are probably also out. Pregabalin is a similar drug but is more consistently adsorbed than gabapentin. As for Horizant, once it is adsorbed into the blood stream it becomes gabapentin. Horizant was developed to address a shortcoming of gabapentin's consistency of being adsorbed into the bloodstream. Personally, I would ask to at least get a chance to try it. I am almost 73 and have never had a problem with dizziness or fatigue. My wife is the same age and takes a slightly lower dose to treat the neuropathy caused by her MS.
4. It is possible that once you get your ferritin levels up to much higher levels (you may need 200 or more), you may no longer need pramipexole or any other RLS medications. Some people benefit from increased iron and others do not (my ferritin is 454 and I have never benefited from the increase, I just keep it high to be safe). And if your symptoms do subside a few weeks after an iron infusion, that does not mean that they won't come back. Repeat infusions are usually necessary. How often depends upon the individual. Several of us have said, we are all an experiment of one. We all have to experiment with our meds and treatments (with the help of a good doctor) to find what works for you.

Finally, based upon how your pulmonologist and PCP receive the information that you share with them and how well you respond to iron therapy, you will need to decide whether to stick with them for treating your RLS or to find a doctor just to manage your RLS. Many of us have had to see RLS specialists for our care. Sometimes, the specialists work with our PCP where the specialist defines the treatment and the PCP then manages prescribing meds and monitoring blood tests. Other times, the specialist has to become sort of a specialized PCP who only works the RLS side of our health.

[KoolKestrel]

Thank you so much, Rustsmith. What you have said makes sense to me. I really appreciate your quick, comprehensive, and thoughtful reply. I was really feeling alone and confused, and you've been very helpful and kind.

[ViewsAskew]

This is my first post. Thanks to the person who welcomed me to submit any questions I might have. I have done my best to read through previous posts and will try not to be redundant.

For background, I was referred to a prominent and well-regarded Pulmonologist because I was diagnosed with severe sleep apnea in Aug. 2024. I am on CPAP therapy and was told I must see the doctor for reasons of compliance. While at the visit, I mentioned my restless leg symptoms. The doctor immediately said, "There is a medication for that!" He gave me a prescription for Pramipexole .25 mg, and I began taking it on Oct. 10. The relief I felt from taking the drug was immediate.

Then I began doing research on RLS. What I learned about Pramipexole and augmentation caused me to doubt the wisdom of continuing to take it. At my most recent visit with the Pulmonologist a month ago, I mentioned research and studies that recommend not taking Pramipexole and asked to switch to something else. He said that I would not augment on such a low dose. In fact, he recommended that I increase the nightly dose to .375. When I questioned him on other possible drugs for RLS, he listed all of them, seemed frustrated with me for asking, and would not recommend one. He also said my iron levels were "normal" even though Ferritin was 29 (low), Transferrin was 375 9 (high), and TIBC was 474 (high).

Subsequently, I went to my PCP who diagnosed me with iron deficiency without anemia and started me on oral iron--3 months before I can qualify for IV iron because of insurance. But I am still on Pramipexole. My PCP does not want me taking Gabapentin at my age (68) because of side effects (dizziness, fatigue).

So, my questions are:
1. Is augmentation still possible on Pramipexole .25mg?
2. How do I address my concerns about Pramipexole with the Pulmonary doctor who prescribed the Pramipexole? Or should I just try to go through my PCP?
3. If my PCP doesn't want me to take Gabapentin, would Gabapentin enacarbil or Pregabalin possibly have fewer side effects?
4. Once I am cleared for IV iron, is it possible it could "cure" my RLS and I could just drop the Pramipexole without having to start a new medication?

Thanks in advance for any comments, encouragement or advice.

I augmented quickly on .125 mg of pramipexole - my ferritin was 8 at the time. Of course, I had no idea about any of it - it was over 20 years ago and while there was some info out there, most doctors were unaware of it and thought that DAs were the wonder drug for RLS/WED. My experience was hellish - eventually with 24/7 symptoms and an increase of pramipexole to .75. I was sleeping less than an hour a night at that point. I finally started reading, found this forum (it was in its infancy), and with many wonderful people here sharing their info, found a way to change things.

Given his/her annoyance at questioning if there are other things you can take, you may want to find another doctor, but some will learn and take in new info.

The following info is old (and I hope I am remembering it correctly!) - I am unaware of what it is now. It used to be said that 20% or so of people who got iron had their symptoms completely resolved. About 60 percent had them diminished. No impact on the remaining 20%. I was in the 60% - my symptoms were resolved by about 45-50%, so it was worth it for me.

[KoolKestrel]

Thank you for sharing your story, ViewsAskew. I will be seeing the Pulmonologist next week about sleep apnea so I will revisit my concerns with Mirapex with him then. I have printed out the article on treating RLS from the Journal of Clinical Sleep Medicine and will bring it with me. In the meantime, I have asked for a referral to a RLS specialist at another hospital. It may take me months to get an appointment, but I think it may be worth it in the long run. Glad you are currently doing well.

[badnights]

Hi KoolKestrel

I also augmented on pramipexole. I was started at 0.125 and told to increase to 0.25 after 2 or 3 nights (whether I needed to or not). My WED/RLS was clearly augmented some time during that first week, probably day 3 or 4, when I started to experience symptoms in my arms during the day. My ferritin was in the 20s at the time. My GP had put me on oral iron, but the internist who put me on pramipexole took me off the iron, saying I didn't need it. So he double-whammied me.

This was 17 years ago. But to hear your story, it might as well have been yesterday.

I don't need to repeat what Steve told you. I will add that with this disease, more than most, you really have to be your own advocate. You should understand that your doctors know an awful lot about many things, but might not know enough about WED/RLS.... and the danger is that a tiny bit of ignorance about WED/RLS can lead to a massive mistake like prescribing pramipexole for a first-timer like you, setting you up for a dramatic, long-term (possibly permanent) worsening of your condition. This is hard for the physician to believe, because there aren't many medications that cause a worsening of the disease they're supposed to help, so the whole idea sounds like nonsense to a lot of them. Sadly. You have to be polite but adamant when you know something the doctor doesn't know.

The new guidelines that Steve shared recommend NOT using pramipexole at all, and definitely checking ferritin and other iron parameters, using iron as first-line treatment and the gabapentinoids next. I'm 63 and I use pregabalin with no dizziness. Kudos to your PCP for adding the iron! But the proper course of action re the gabapentinoids would be to warn you of the possible side effects, and prescribe the med with instructions to contact her if you get an important side effect. (Just as an aside, if your PCP truly understood augmentation, she/he wouldn't hesitate to prescribe a gabapentinoid, since the risk of augmentation from pramipexole is high, and the consequences of augmentation are worse than being dizzy all the time - although I wouldn't want either.)

Good luck

[KoolKestrel]

Beth,
Thank you for your thoughts. I'm so sorry you had to go through that. Glad you found something that works for you. I'm going to request a trial with a gabapentinoid when I see the pulmonologist next week. What is considered a therapeutic dose of pregabalin? Do you titrate up? Do you stay on pramipexole while you transition? I think the doctor mentioned that Horizant is more expensive, but is it worth asking for/better than pregabalin? Thanks again for your post and help.

[badnights]

Hi Kool

I don't think there's any way of knowing which one of pregabalin or Horizant might work best for you. You could ask the pulmonologist which he would recommend. Leaving the choice up to him might work well if he's the kind of person who needs to be in control. He sounds like he's going to be difficult to work with, since he would have to backtrack and admit he was wrong in order to agree that low doses of pramipexole can cause augmentation. Your PCP might serve you better as your primary WED/RLS caregiver.

In order to treat your symptoms, according to the latest expert advice, you should try iron and a gabapentinoid. (Both the 2021 Mayo Clinic recommendations, which are easy to read, and the 2025 AASM recommendations, which are dense, can be downloaded from my signature link.) I'm not a doctor and this is not medical advice, but you might want to stay on the pramipexole as you start the gabapentinoid, keeping in mind that the idea is to get off the pramipexole completely, as soon as you can. If it was me, and if I'd gone up to .375 pramipexole, I'd go back down to .25, and if I'd stayed at .25, I'd try lowering to .125, within a few days of starting the pregabalin, and I'd have a plan to very soon lower the pramipexole to nothing.

('Actually-really' if it was me, knowing what I know now, I'd stop the pramipexole dead and never look at it again. But that might be an extreme reaction caused by my experience of augmentation and quitting DAs, which the thought of still - STILL, 16 or 17 years later - causes a visceral reaction with flashes of terror.)

Your doctor - even the pulmonologist - can give you a reasonable plan for reduction and stopping of the pramipexole and a starting dose and up-titration plan for the pregabalin or Horizant. I understand that after your experience of his ignorance on the problems of pramipexole in WED/RLS, you might be leery of trusting your pulmonologist, but he can't do any unintentional harm with any meds other than DAs, so you can trust him with a pregabalin plan. As long as he's clear that you're going OFF the pramipexole, he can also guide you on doing that - but the danger is that he won't take the issue of augmentation to heart, and consequently will tell you to lower a bit, then not tell you anything, leaving you there at that dose, because he really believes it's doing you good.

I've used 75 - 150 mg pregabalin for years. (I've been afraid of going too high because I became suicidal on gabapentin, but pregabalin seems ok for me.) Those doses do nothing discernable for my sensory symptoms; they just help me to sleep. They might do good things for you, though, since you haven't augmented yet.

Your PCP has you on oral iron and sounds amenable to IV iron if your ferritin doesn't go up in 3 months. That's great. Hopefully your PCP is following the 2018 guidelines for the use of iron therapy in WED/RLS (also in my signature link).

[KoolKestrel]

Great advice! Thank you. I'm going to message the Pulmonary doctor about this today. No point in waiting. I'll let you know how it goes!

[badnights]

Awesome! We'll be waiting to hear and hoping for good things.

[KoolKestrel]

Steve, Ann, and Beth,

A huge, heartfelt THANK YOU to all of you. I met with the Pulmonologist today. I'd already messaged him ahead of time about wanting to get off pramipexole and getting on an apha-2-delta ligand. He made no small talk, but immediately asked me why I wanted to get off. I told him I'd been reading studies that scared me about continuing with the medication. I also mentioned that it wasn't working as well and that I was having symptoms earlier in the evening. He went right to pregabalin as the alternative. But he kept coming back to the pramipexole. I finally handed him the copy of the study from the Journal of Clinical Sleep Medicine that Steve had recommended. He brushed it away. I opened it to the chart on page 141 and handed it back to him. For the next 10 minutes there was complete silence in the exam room while he read through the next several pages of Recommendations. He seemed totally engrossed, and I strongly believe that he had not seen the article before. When he finally looked up, he SAW me. You know what I'm talking about. Doctors spend most of the time with you looking past you or at the computer or.... It was a moment of quiet victory and personal validation that you all made possible.

So, I will pick up a prescription for pregabalin tomorrow. Unfortunately, he told me to quit the pramipexole completely "in 1 or 2 days" before starting the pregabalin. My understanding based on RLS Foundation videos is that I should titrate down on the pramipexole (drop from .25 to .125) while also starting and titrating up on the pregabalin. Please correct me if I am wrong, but I am worried about getting off the pramipexole too quickly and before the pregabalin has had a chance to kick in. I'm thinking I should give it at least a week.

And there's more good news. My PCP has authorized IV Iron. Hopefully insurance will approve and cover it. I'll know in the next few days.

So much gratitude to all of you for your help and support.

Wendy

[Rustsmith]

You are correct that the best way is to titrate your pramipexole dose down and not stop suddenly. Fortunately you are not at a dose that is so high that abruptly stopping would result in Dopamine Agonist Withdrawal Syndrome, but you will not suffer as much if you drop to 0.125mg for a few days and then once again when you feel that you are stable, probably to 0.0625mg (if you can cut it that small) for a few days before stopping. You might even want to go every other day near the end if that seems to help. During the taper, if your legs bother you or the insomnia gets too bad before the pregabalin kicks in, remember that you can soak in very hot water to get temporary relief.

[Rustsmith]

Steve, Ann, and Beth, A huge, heartfelt THANK YOU to all of you.

Wendy, thank you for posting your success story. Hearing about successes like yours and how we were able to help is why we continue to volunteer to keep the discussion board running and to respond to each and every person who posts a question. Replies such as yours are what keeps us going, so thanks to you for letting us hear about your success and how we were able to help you achieve it.

I hope that your infusion goes well and that the combination of higher ferritin levels and pregabalin keeps your RLS well managed for many years to come.

[badnights]

Kool/ Wendy
That is such a phenomenal win. I love it!

Everyone who may be about to go thru a similar process, please note how Wendy didn't give up when he dismissed the paper she was trying to show him. She had already read thru it herself and marked the relevant section, so she opened it and pointed to that part. Respectful but assertive. That's when he got interested. Good for you, Wendy! Good for him!

EDIT:
there is also the document posted here: viewtopic.php?p=111523#p111523
that gives advice on how to approach doctors; it might be useful to someone in a similar situation.

[ViewsAskew]

So happy to read your latest development. That is wonderful.

Per stopping the pramipexole that quickly...my doc has always said there was no need to stop a low dose slowly - say .25 mg. He advocates it when you are more like .75 or higher. BUT - we all are different and slower is almost always better in my experience. I was on a tiny dose of clonazepam only for a couple months and every doc told me I could stop it immediately. That was when I looked like an addict stopping heroin. It took me 7-8 months of teensy titrations downward after that. Then I took Tramadol for 6 weeks. I was in the ER when i stopped it. So, I just go slow these days regardless of what it is and what the doc tells me.