I've been prescribed pramipexole by sleep specialist and my doctor. They're following the Mayo algorithm so I have to do this before they'll consider opioids. I've tried pregabalin, etc without success. Starting pramipexole on .125mg, up to max .75mg. I'm too scared to take them due to potential augmentation and the horror stories. Because it's on the Mayo algorithm I can't argue it with my doctor. I'd like all your thoughts on this. My thought, to avoid augmentation, is to alternate cannabis and pramipexole. Could that work out OK? Maybe 3 weeks on, then swap over? Or 3 months on? Or some other plan? I would really welcome any of your thoughts on this. I feel stuck, too worried to give this a go but I have to do something to help with my severe RL and I have no other option atm due to doctor following the Mayo guidelines. Thanks to all the wonderful people on this forum. Without you I'd be alone in my RL nightmare.
Alternating cannabis and pramipexole - Restless Legs Syn...
Alternating cannabis and pramipexole
Did you ever have your ferritin checked? That is the first thing the Mayo Algorithm says to do.
The acceptable maximum pramipexole is .5 mg. which is stated in the Mayo Algorithm. Your doctor wants you to try 1 and a half times the maximum before prescribing opioids.
It does say "If alpha2-delta ligands are ineffective or poorly tolerated, change to a dopamine agonist." which is what your doctor is probably referring to. It also says for refractory RLS to consider opioids. "Opioids are highly effective in the management of refractory RLS,16,43, 44 reducing daytime tiredness and improving sleep and quality of life,43, 44 and thus should not be withheld from appropriately screened patients because of a fear of potential development of tolerance or dependence.17 When opioids are used appropriately for RLS, escalation of dose is uncommon, and misuse is infrequent in the absence of a history of substance abuse."
So your doctor wants you to suffer possible augmentation before trying opioids. I would find another doctor.
And no - I wouldn't suggest alternating them every 3 weeks as you would suffer withdrawal.
Also another one to try first is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
Thanks Sue, my ferritin is 127 and Transferrin saturation is 44%, not sure if I can safely take more iron?. Yes, the Pramipexole upper limit she prescribed is too high! Thanks for clarifying the withdrawal if I was to alternate! I had wondered how that might go. She's a super conservative doctor and I can't change doctors as all in our district are overbooked, they only take people new to the area. I have low blood pressure so she may not consider dypridimole. I do feel I have so few options and my health is not in my own hands. Thanks again for your ongoing help on the forum. It is a huge source of comfort to know we're not alone on this strange night time journey.
Yes your Transferrin saturation is close to the limit, so probably not good to take any more iron.
Some other things that may help are ketamine, ,various anticonvulsants:[ Tegretol (carbamazepine, Equetro, Epitol, Carbatrol), Oxcarbazepine (Trileptal, Oxtellar XR), Lamotrigine (Lamictal), topiramate (Topamax, Qudexy, Trokendi), valproic acid (Depakene, Depakote, Sodium valproate, divalproex sodium, Epilim, Alti-Valproic (in Canada), Convulex), levetiracetam (Spritam, Roweepra, Keppra), Wellbutrin (Bupropion, zyban), buspar (Buspirone, vanspar), botox, Bambuterol, Naltrexone (LDN, Vivitrol, Revia), Piracetam, Propranolol (Inderal, Hemangeol, InnoPran) a beta blocker, - Provigil (Modafinal). They are listed in the order of the ones most likely to help first. Https://pubmed.ncbi.nlm.nih.gov/36873914/ is the article that mentions lesser known medicines which can help RLS. They may have side effects you cannot live with. They may not be appropriate for you based on your medical condition or other medicines you are taking. As always discuss these with your doctor.
wow Sue, that's an impressive list, I'll have a closer look at it. Thank you for all you do for this forum.
The lowest dosage available from the pharmacy in the US is .25.
The lowest dosage of what?
The major failing of the Mayo algorithm is that it puts dopamine agonists before opioids.No expert in the USA would put a patient on DAs.
As SueJohnson advises, first line treatment is actually iron. Raising serum ferritin above 100, preferably 200 by pills or iron infusions.
Also, replacing all trigger meds (anti depressants, anti histamines etc).
Dr Earley makes it clear EVERYONE taking dopamine agonists WILL experience worsening. Top tips to avoid this is to keep the Pramipexole dose to the absolute minimum and to keep brain iron levels up.
I'm sorry that you have to go down this torturous route.
Can you change doctors and find one willing to prescribe a low dose opioid if an iron infusion doesn't help?
Hi Joolsg, thanks so very much for your constant support and advise on this forum. I'll look up Dr Earley and see if there is something I can show my doctor. My sleep specialist mentioned methadone but then back-tracked and said to try dopamine first! As in my note to Sue, I think iron is out for me. I don't take any other meds and eat whole food, minimal coffee and alcohol (though they do make me sleepy, especially coffee!). My dopamine receptors must be feeble...I had a blood transfusion as a new born due to rhesus factor way back then...I often wonder if that was the start as I read it can cause iron deficiency anemia. I've often wondered what triggered this disease in me and maybe that was it?! My tired wandering mind is always looking for answers.
hopkinsmedicine.org/profile...
The video at the top of the link shows Dr EARLEY stating that everyone will suffer severe worsening of RLS on dopamine agonists. If you can persuade your doctor to prescribe methadone, do your very best. If he refuses, ask for a written guarantee that he will prescribe it to help you get through withdrawal from pramipexole when it stops working, and that he will compensate you for any impulsive spending or gambling. There are an increasing number of cases of Impulse control disorder on these drugs.
As you can tell, those of us who have been through augmentation and withdrawal feel very strongly about these awful drugs.
I wish you luck. Let us know what your doctor says.
Hi Joolsg, I found Dr Earley and then saw your message!. I'm listening to his amazing video! I won't take Pramipexole - was worried but now I'm sure I won't take it. It's so clear. My symptoms are severe night time only and I cannot see why I would want to cause further desensitization to the already sad receptors and suffer worsening RL further in my body. So...I will visit the doctor again, can't face it just now, maybe after Xmas. In the meantime I'll see if I can improve sleep as Dr Earley explains that connection too. Even a small improvement would be a win for me. Thank you so very much for all youyour thoughts. BTW another topic the Pregabalin I tried caused some impulse spending; a pair of very expensive boots that don't suit me and I'll never wear. 😜
Pramipexole causes gambling, over spending, over eating, hypersexuality (ICD). There have been class actions in the USA and several legal cases here in the UK.Every doctor prescribing Pramipexole MUST warn patients expressly of the very high risk of drug induced worsening AND ICD.
It's one route we can take to try to get these drugs banned. People have lost homes, marriages, liberty and their lives because of ICD. It is so upsetting.
I don't see any video- ?
hopkinsmedicine.org/profile... scroll to the top, then under Dr Earley's photo is a box and a video play button. Press that, and you see Dr Earley talking about augmentation and his belief that EVERYONE will augment on DAs eventually.
Hi Rayme, of cannabis helps you, why don’t you use only cannabis? I am in the same situation, but cannabis works for me just for 2 days and then I have to take a few days break. It feels like cannabis accumulates in the body. I alternated prami en cannabis (5 days/2 days), but still had to increase prami to 2,5 pills of 0,125 mg. Having a 3 month drug holiday now to avoid augmentation. Dypiridamole doesn’t work for me by the way.
That's really good of you to tell me what is happening for you, so very much appreciated. It renews my energy to just stick with what I'm doing for now. It's true, the cannabis needs frequent breaks and I usually do 10 Days on 10 Days off then weaken and take some on the off days and it's nowhere near as effective if I keep doing that. What I do like is that it is soothing and helps the insomnia as well as the awful RL. You say you're having a drug holiday, will you go back onto prami after the 3 mths? That augmentation really is awful. I'm happy for you that you have been able to manage your situation well. All the best and again thanks for sharing your story with me.
Hi Rayme, happy to share my experience, so please ask whatever you would like to know. Yes the idea is to return to prami after 3 months. It’s cursing in the church, but I like the medicine. There is not a side effect and it helps well. For now I have been using Pregabaline which messes up with my head and tomorrow having a call with my neurologist to discuss the temporary use of OxyContin. She has PHD in RLS and there are not many specialists of her level here in the Netherlands. So I listen to her and check online if it makes sense with the famous protocols.
Thanks DNoda, I do wish to ask! How long have you been taking Prami/Cannabis on 5day/2day before needing a drug holiday? I know it effects everyone differently but am wondering how it went for you. Are you coping OK with withdrawal? Did it work well for a long time before dose increase? My Dr says maximum for Prami is .75. I definitely don't wish to ruin my feeble dopamine recetors even more as my RL baseline is already severe, only at night. I imagine the temporary oxycontin will tide you over the withdrawal period, methadone will be my next option but the Dr won't prescribe it yet. I had hoped for some way of alternating something with cannabis, but don't know what? I would try kratom but it's illegal in NZ. The Pregabalin caused fuzzy memory and blurry eyesight and a type of confusion for me, and still had RL! I'm pleased for you there is a RL specialist to go to in NL. Thanks for your info.
Wel it’s difficult to say how long. In the beginning I just took prami twice a week and sometimes the whole week nothing. I notice that when I sport intensively (like cycling very long distances or jogging), my rls gets much better, so I just did that very often en accepted the bad nights that happened sometimes. But after like half a year I started the 2/5 scheme and after 6 months or so I landed at the dose 2,5 pills. I didn’t want to increase to avoid augmentation, so here we are busy with the drug holiday. So in total it was 1 year. I notice I am very quickly tolerant to everything, most people have more time. The withdrawal is no problem at all. I’ve had 3 bad night so far since October, 12. And I am prami free for a few weeks already. Also thinking of Kratom, luckily it’s legal in the NL( like a lot more things haha), but need to do some more research. My dr gave me the methadone option as well by the way, but she is very serious about it and she want me to have a heart scan before and if I start methadone. For OxyContin it’s not needed.
I had a look at your replies on other posts and can see how it's been going for you. The rapid build of tolerance is a hard one. You seem to have it working well for you with the drug holiday. I was close to taking Pramipexole but have decided to first have another talk to my doctor about a 2-3 mth cannabis/1 mth methadone, like Dgags, see his reply to my post. I really don't want to worry about augmentation as my RL is already so severe. I wish you well and that the plan continues to work well for you.
In the UK you can buy otc paracetamol and codeine. I don't know if its the same in New Zealand. Before tramadol I found they helped me.
I was wrong. The lowest dosage I can get of pramipexole is 0.125. It is a very small tablet and hard to cut in half
You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it.
ask for Low Dose Naltrexone. It really helps. Read my original post
thanks, will check your post and will see what Dr says about it.
thank you.
I’ve been on ropinirole and pramipexole for about 3y. They worsened my RLS and made it spread to my back and even my arms.
I’ve tried vaping cannabis and it works nearly instantly. Unfortunately, just two hours of relief.
Based on what I know, I’d immediately get off the dopamine agonists. Also in my humble opinion, cannabis is not a long term option for this disease. I would say it’s a good thing to have around as a backup until you and your doctor find something that works for you.
I really empathize with you … I’ve been there
Good luck.
Rayme, I alternate marijuana infused sour gummies with 5 mg of oxycodone - two or three months of sour gummies with 10 mg of marijuana, and then one month of 5 mg of oxycodone. That seems to work for me, with the sometime side effects of oxycodone of getting very itchy for about an hour after consuming the oxy. If I time it right I get most of the itchiness and scratching out of the way before I lay down to sleep. Dave
thanks Dave for telling me what works for you. That is the sort of plan I'm looking for. The 2-3mths/1mth sounds pretty good to me. I really want to try that so will ask my doctor if she'll prescibe the methadone on that basis. I really hope she'll agree! It is very helpful info, thanks and all the best!
Could you please tell us how you react to oxy? I took my first ever dose (just half of 5mg pill) and I was sooo stoned. Today I am at the office and everything is still blurry. I am a young professional and need to be able to think at my work. But this way it’s quite complicated. The RLS was by the way completely gone from this dose.
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