My lovely gp prescribed gabapentin on the advice of the consultant neurologist I saw in September (for a very brusque 10 min appointment - now discharged). I have been on 300mg 3x a day for 4 weeks but no effect on my symptoms. He has given me the option of increasing the gabap or sticking at the same dose and adding in mirapex. Having read a lot of the posts here, I've opted to work up the gabapentin dose for now.
Does anyone else take gabap + a DA? I was wondering if it would mean a lower dose of the mirapex might be possible in combination with the gabap, so less risk of augmentatiin/ICD? Just thinking about plan b!
Ferritin is 120 btw.
Thanks
Alison
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Nottsali
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Thanks for replying - my symptoms are 24/7 so need daytime coverage really. Gp not keen on prescribing opioids if we can get the gabapentin to work, but I'll push for that I think if upping the dose of gp doesn't work. So far no side effects really, but thanks for pregabalin suggestion, I'll bear that in mind.
I too would urge extreme caution before embarking on a dopamine agonist and would have thought an opioid would be a better option. I would just add that if you were to try one, I would have thought neupro patch (rotigotine) might be a better option for you. It is slow release over 24 hours and may be better for you given your symptoms are day and night. If you did opt for a dopamine agonist I would suggest making sure to keep your serum ferritin high and not exceed the basic dose that you find works at the outset. Also be vigilant about worsening symptoms and immediately reduce/eliminate - rather than increase dose - if symptoms start to worsen.
I have seen a number of posts from people who have found that getting their serum ferritin to over 300 has helped. Unfortunately, it seems to be very difficult to do this without an iron infusion except for those unfortunates with hemochromatosis.
Hi involuntary dancer, i'm interested to learn about the 300 ferritin levels. I have done a quick search of this site but can't find the posts you mention. I have just has an iron infusion (one week ago) and simultaneously coming off pregabalin (over a 6 week period) and returning to pramipexole. Despite swearing off the pregabalin, i'm starting to think it's "stoner" side effects are better than the nighttime nausea and insomnia from the pramipexole. Thanks
If you look at the US forum (search 'bb rls org') you will find more people posting about iron transfusions as they are more commonly used in the US and more people on there see the 'big' names in RLS such as Dr. Earley, Dr. Allen and Dr. Buchfuhrer.
It sounds like you are getting good medical care from a knowledgeable expert and I am sure you won't need me to advise you about the level of caution required on pramipexole but just in case (even apparently knowledgeable medical professionals seem to be remarkably cavalier about the dangers of dopamine agonists and the torture they can cause if augmentation is allowed to take hold) ... make sure not to increase once you hit a dose that works. Keep serum ferritin high (should be fairly straightforward if you have recently had a transfusion). If you find the pramipexole becomes less effective over time, I would be inclined to reduce rather than increase the dose and possibly even eliminate it temporarily and use an alternative treatment to cover symptoms - most likely an opioid - for a while.
As I understand it, the benefits of an iv iron transfusion can take a number of weeks to be felt and in your shoes I would be inclined to use only a very low dose of pramipexole until you have given the transfusion a chance to take effect. Some fortunate people find they do not need any drug treatment for their RLS once the benefits of the transfusion kick in and it would be a shame if you actually fell into this category but did not realise it because you were already taking pramipexole and thought it was covering symptoms.
Thanks ID, i will look that up. I was interested to read your comments as you seem very knowledgeable. This time around, I have only been on the pramipexole 6 weeks now (already at max dose of 0.5mg) but already experiencing augmentation (symptoms earlier in evening and some restless legs before falling asleep) . I have off the charts periodic limb movement disorder and don't generally experienced restless legs just PLMD when awake and asleep - there is such a thing!.
I am still taking 75mg of pregabalin (down from 300mg) and take 0.75mg of clonazepam when I need to be assured of a good sleep. I'm not sure which way to turn now as the one time I took tramadol, i had an entirely sleepless, hallucinatory night. I have had 2 iron infusions previously (several years back) but was expecting a 100% cure which didn't happen. These days I'd be happy with any improvement!
I will go back to my sleep specialist and discuss coming off the pramipexole and taking pregabalin with dipridyamole or introducing some other opiate (which he's not keen on but not entirely against).
It sounds like you are really up against it - with your options contracting. Why do our bodies do these things to us? From what you describe, pramipexole is not going to avail you for much longer and I imagine that the longer you stay on it, the harder it will be to withdraw from it.
Have you messaged Dr. Buchfuhrer? He usually responds within hours (provided good grammar, spelling and syntax is used!). He may have some suggestions. My understanding is that PLMS is harder to treat than RLS. My knowledge is all gained from this and the US forum, the Johns Hopkins University Hospital website, Dr Buchfuhrer’s website (rlshelp.org) and general reading, including the medical textbook Clinical Management of Restless Legs Syndrome. And of course all the experimentation I have carried out on myself with the assistance of my very helpful GP. I am only a lay person with no particular expertise.
I’ve already posted this many times but I did read an account of one guy who found that taking a high dose of naltrexone (from recollection it was 25mg in his case) had the effect of reversing his augmentation and dopamine agonist induced impulse control disorder. It might be worth trying for you if all else fails and you can persuade your GP to prescribe the naltrexone. It should be noted that naltrexone cannot be taken at the same time as opioids which removes it as an option for many on here. I am currently trying a system of taking naltrexone with pramipexole but my dose of both drugs is much lower (9mg naltrexone and 0.088mg pramipexole). Unfortunately, I think my days of good coverage from the pramipexole are coming to an end with symptoms breaking through nightly at moment so I have imminent decisions to make ...
Have you tried restrictive diets? Many people report considerable improvement in their symptoms with a ‘clean’ diet. The fodmap diet has some very fervent supporters.
Thanks ID. I am waiting to see my sleep specialist but managing at present on a nightly combination of 250mg pramipexole, 100mg Lyrics and 0.75mg clonazepam. I find that combining meds sometimes works quite well but am worried about developing tolerance to all then not having any further options! On your suggestion, I am planning to ask the specialist about LDN as I have read some positive things about it. Not wishing to concern anyone overly, but I have recently read that opioid can accelerate cellular ageing (however most studies that I have come across have been done on people using opioids illicitly). I also emailed Dr B. His response was very interesting (although a little confounding) as he had a totally different take on treating PLMD which I'm not sure would work for me. I have tried both gluten free (6 months) and low FODMAP diets (3 months) but didn't notice any difference whatsoever. I'm thinking of trying an anti-inflammatory diet next. Just need to psyche myself up to it!
I have also noticed that there does seem to be a lot of trial and error with gabapentin before finding the timing/dose that is effective so wouldn't be inclined to give up on it yet. Good luck.
Thank you - I really appreciate your advice. I did ask about the patch but my gp would need hospital authorisation first. Will carry on tweaking the gabapentin dose and think positive thoughts.
You have a great attitude - good luck! Pippins suggestion of switching to pregabalin is also worth considering. Sometimes one works well even though the other didn't.
I wouldn't touch Pregabalin with a barge pole. I suffered unexpected unbelievable disorientation. It is also alleged that it kills brain cells at an alarming rate. I have had RLS for as long as I can remember and Pramipexole, Clonazepam and Codeine Phosphate have been my saviour. Over the last ten or fifteen years I have taken this cocktail and have upped the dose very slightly in that time. I now take an under the counter 'herbal medicine' as well and have never slept better in my life.
Hi i would increase the Gabapentin or switch to Pregablin.If no improvement (neither helped my RLS but works really well for some ) then i would try adding in a milder opiate eg a low dose of Codeine.If you do go on a DA i would only try Neupro patch as has the lowest rate of augmentation and would only try the lowest dose of 1mg but avoid DA if you can x
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