Kratom/Neupro

[Camry2020]

Thanks to all!! I’ve had RLS FOREVER and I’m now 79 and it’s so acute I don’t know where to turn. Kratom is somewhat helpful but not terrific. I also have a neupro patch but experiencing bad compulsive behavior asa side effect. Does neupro have to be withdrawn gradually? How? Can it be overlapped with Kratom? Opioids don’t work at all! Where to begin? Daytime attacks are horrendous and embarrassing. Sorry to whine!

[LotteM]

Hi Camry, so sorry to hear about your badly controlled RLS. That mist be awful. Somehow, we often seem to 'grow' with are challenges, but of course, of course! we'd rather not deal with them. And in any case, never excuse yourself for whining. We here understand what you are going through and know that it is all but whining, it is serious business!

You post screams "augmentation" all over. This is a paradoxical worsening of symptoms that occurs mainly with dopamine agonists (DAs) (pramipexole, ropinirole and rotigotine=Neupro). And your compulsive behaviour is a rare, but very severe side effect of DAs. So yes, you definitely may want to talk to your doctor and start reducing the Neupro.

What dose are you on? You may have to switch first to 1mg patches and then reduce slowly. Patches can be cut, as many people on this forum have done without any ill effects. The big rule of thumb with DA reduction is to go slow, very slow. And especially the last steps are better taken in even smaller steps, as these are generally the hardest. If you use the search function and search for augmentation, you'll find very many posts and replies describing what should best be done and how people experienced their DA reduction.

As to the kratom, it is not an opioid, but attached to the same receptors. Personally, I find kratom is at least as effective as oxycontin, but with far less (if any) side effects. Kratom works fast, especially on an empty stomach, and can be combined with Neupro as both work on different parts of the system. If you want to start using kratom, you first need to consider the (il)legality in your country/state. I assume you are in the US? Anyway, when you decide to start using it, start with a very low dose and experiment until you find effectiveness. I started with 1/4 teaspoon, far too little to generate effect according to the general info, but after a few days I settled on 1/2 teaspoon and still take that amount. For kratom the rules of thumb are again to find your lowest effective dose, to not increase the dose, and then to rotate regularly between strains. I find red vein borneo the most effective, but also thai/maeng da and green malay worked for me.

Good luck. And keep posting.

[involuntarydancer]

One of the many downsides of rls is that non-sufferers tend to dismiss our descriptions of our very real suffering as 'whining'. No one on here will think you are whining when you outline horrid, embarrassing and even tortuous symptoms. We all know what you are talking about. It is a joy of this site that everyone takes the condition seriously.

It would be helpful if you indicated what your dose of neupro is and how long you have been on it. I agree with Lotte. Reading between the lines of your post, it seems as if you may be augmenting. Usually those impulse control issues strike when the dose is high which would also be consistent with augmentation. There is also a study suggesting that links the emergence of impulse control issues with the onset of augmentation.

As Lotte says, you will therefore likely have to withdraw from neupro and find another treatment. Have you had your serum ferritin checked? If so, can you indicate what it is? Raising iron levels can have a positive impact for many sufferers. Also, have you tried the anti-convulsants in the alpha 2 delta ligand category (pregabalin, gabapentin, neurontin, horizant)? These help many sufferers.

Finally, when you say 'opioids don't work' could you indicate what opioids you have tried? There is an excellent presentation available to watch on the Johns Hopkins University Hospital website by Dr. Christopher Earley (an expert in RLS treatment) about how the various opioids work in relation to RLS and how it is always worth trying a variety of opioids before giving up on them. I think the video is also available on utube. You could try searching under Dr. Earley's name.

[LotteM in reply to involuntarydancer]

Excellent additions from involuntarydancer. I agree wholeheartedly.