Next steps and questions

[dlourens]

Hello, I'm a fairly new member here, but have been dealing with RLS for about 10 years. I've been taking pramipexole for much of that time, gradually increasing the dosage as symptoms have worsened to my current level of 0.5mg. I'm now experiencing what I believe is augmentation - symptoms are somewhat worse, happening earlier (and later) in the day, and sensitivity in my arms as well as my legs. It's not as debilitating as some folks have described on these boards, as I still (usually) sleep most of the night, and can mitigate symptoms with the meds and walking as needed. But it's definitely disruptive, getting worse, and I don't know what the future holds.

While my primary care physician has been cooperative in trying to help me, I'd say he's not experienced in treating RLS. I feel like I need to drive a treatment plan for myself, and so I'm trying to determine next steps based on what I've read on the rls.org site and on these boards. Does this plan make sense?

1. I will ask my PCP for an iron test, but exactly what should I ask for -- ferritin, iron panel, and transferrin tests?
2. I feel that I may need to transition off pramipexole (or reduce dosage), but am intimidated by that prospect. I did get a prescription for pregabalin because it seemed like a good replacement for pramipexole, but have not used it yet. Is that the way to go, or should I try something else first (Horizant, Neupro)? Or do I need an opioid?
3. If iron levels are normal and other medications are not effective, then do I need to consider a drug holiday? From what I've read from others, this sounds like a last resort.
4. Or should I just stay the course with the pramipexole until symptoms get more "unbearable"?

This is so difficult because it feels like we're just making it up as we go, and all treatment plans are different. And while everyone seems to think we need to get off DA's, I just don't understand what an "end state" looks like for me. In reading the boards there really seem to be a lot more horror stories than success stories, so that's disconcerting.

Thanks in advance for answers to my questions, and I welcome any whatever suggestions you have. This is a great forum and I really appreciate everyone's time and effort to respond to all of us.

[Polar Bear]

Welcome, we are happy that you found us but sorry that you needed to.
1. Yes, you want your bloods done and it's your ferritin serum level that you need to specifically ask for. When you get it done ask for the number, don't accept 'normal'. Normal is anything over 20. We want out ferritin to be up near 100.
2. It would be best to get off the pramipexole and it can be very challenging. Nowadays pregabalin (or gabapentin) would likely be the first thing to try. It may eventually be a replacement but it would be unlikely to be sufficient to cover the withdrawal from pramipexole and if your doctor is cooperative an opioid for a couple of weeks would greatly help you wean off the pram.
3. There are always combinations of meds to try. Some members have had good success with iron infusions, if your ferritin is low. Drug holidays can be an option but it's early days yet.
4. If it was me, I would not stay the course. I'd get off the pramipexole.

We do sort of make it up as we go but there is a general path to follow and then take it from there. You read horror stories here because often once people find a resolution we don't hear from them so much.
Most of us with moderate to severe rls eventually take an opioid, often a medication cocktail, and achieve reasonable success. At present I take cocodamol and pregabalin with good results. Not 100% but good enough.

[Rustsmith]

1. The iron tests that you need your doctor to order are 1) an full iron panel and 2) ferrritin. The iron panel gets everything that you will need, except for ferritin, which has to be ordered separately.
2. Since you appear to be augmenting, you do not want to switch to another dopamine agonist, which includes Neupro. Lyrica is probably the best place to start once you have gotten off of pramipexole. It is in the same class of meds as Horizant, and is less expensive (while still not cheap).
3. When you get your iron results, don't accept "normal" for ferritin since that is anything over 20 for the general population and we need to be at least 75 and better yet, over 100. If you haven't been taking an iron supplement, you can expect your ferritin levels to be lower than that.
4. You probably will want to get off of pramipexole NOW. Waiting is only going to make things worse and then the withdrawal will be all the more difficult.

Finally, dopamine agonist withdrawal is very difficult unless you have a few days of an opioid to cover the symptoms. Lyrica is not strong enough to do this and will only help once you are off of pramipexole. This will take at least a week for the worst of the symptoms to subside and usually about a month to return to whatever your normal RLS is like. IF you cannot convince your doctor to provide you with at least a week's worth of an opioid, you can expect absolutely no sleep and the worst RLS you have ever experienced. Give your remaining pramipexole pills to someone to hide, because around day 4 you will not be strong enough to resist taking one, which just starts everything from the beginning. Around day 7, you will be able to start getting short naps and the RLS will slowly subside.

As for drug holidays, the doctors at Johns Hopkins like this approach because they want to find out if your RLS is mild enough after withdrawal to limit what meds you will need. If your RLS was moderate to severe before you started pramipexole, you can expect it to be worse now following augmentation and another 10 years of aging. Most of the rest of the RLS experts feel that this approach is too hard on their patients and choose to provide opioids.

Finally, here are two documents to share with your doctor before you start this journey. Read through them, highlight key passages relevant to you and then ask your doctor his/her opinion. Hopefully, these will be enough to convince him/her to take the opioid route. You might want to point out that these were funded by the RLS Foundation and have been provided to the CDC.

https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://www.mayoclinicproceedings.org/a ... X/fulltext

[dlourens]

Thanks to both of you for your quick responses. A couple of follow-up questions - would it be ok (better?) to move off the pramipexole and onto Lyrica slowly, rather than go cold turkey? If so, how would I go about doing that, and how long of a "weaning off" period should I have? And what if I could get down to say 0.25mg pramipexole, along with Lyrica - would that be a viable long-term solution, or is it critical that I get completely off the DA?

[Rustsmith]

You should probably drop from 0.5mg to 0.25mg for a couple of days. Beyond that, you are just extending the agony of horrible sleep and elevated RLS need to move symptoms. As for starting Lyrica and staying at 0.25mg, that is something that you will need to figure out for yourself. All of us are different and we have to find what works for each of us. If you are lucky and the combination of 0.25mg and full dose Lyrica works for you and you don't need to increase beyond 0.25mg, then great. But don't expect miracles. The closest thing to a sure bet after augmenting are the opioids.

Years ago, I switched from 0.75mg of pramipexole to methadone in one day, but my doctor asked me to stay on 0.25mg for a few days until I got my methadone dose lined out. That ween without any problems and I immediately felt better than I had during the year that I was augmented. I eventually got to zero pramipexole, but found that I needed a slightly higher dose of methadone at zero than I did with 0.125mg (I should also add that I also take gabapentin for another condition, but that it helps with my RLS insomnia). I have stayed that way for six years now, a combination of an opioid, 0.125mg pramipexole and gabapentin. I can stop the pramipexole, but that requires increasing the opioid dose and I feel more comfortable (mentally, not physically) with the three med combination than I do with increasing the opioid and dropping the pramipexole.