Am I right to be worried?

[Leelee49]

Hi all, out of shear desperation I started taking pramipexole again because it works for me, although it gave me panic attacks, I was desperate. So now I’m taking 1 x 0.88 every other day because I’m worried about augmentation. Do you think it’s a good idea to take them? I’ve only had them for a week or so, but after reading all the horror stories I don’t know what to do.

[Hidden]

Hi Leelee!

I would normally respond that that is a really hard question to answer since everyone’s journey and reaction to medications is different, but haven’t you augmented on Pramipexole before?

[Leelee49 in reply to Hidden]

I did yes, but I was taking more than what I am now, so thought I would be safe if I stick to what I’m taking now.

[Hidden in reply to Leelee49]

Hopefully the answer is “yes, you’ll be fine”, but it’s really hard to say for sure. Others might be able to give you a more definitive answer, although I don’t know how they can do that. I’m really sorry that I can’t give you a definite yes or no. There’s only one way to find out and that is to try it.Good luck!

[Leelee49 in reply to Hidden]

Thankyou jess, I’m really struggling as what to do because nothing else is helping me now, so I’ve no choice really. Thanks for your replies.

[Hidden in reply to Leelee49]

You’re welcome!

Been there before. It’s awful, isn’t it? So sorry. You know where to find my inbox if you want to talk.

[involuntarydancer]

I did this - returned to pramipexole having augmented on it previously - the dark side!. I have been taking since February half a 0.088 tablet (thus 0.044mg) 5 days per week. I take two days off a week to reduce the risk of augmentation or tolerance. I took a break of 5 or 6 weeks over the summer for the same reason.

There is a link between augmentation and low iron levels so I keep my iron stores as high as possible.

There is a link between augmentation and increased dose of pramipexole so I will NEVER increase my dose above 0.044mg daily. If (when) symptoms start to breakthrough I plan to discontinue pramipexole, at least for a while, rather than increasing the dose. I hope in this way to avoid augmentation. Nothing works for me as well as pramipexole.

Perhaps it would be worth your while cutting the tablets in two (I got a pill cutter from the chemist - very cheap and quite effective) to keep your dose very low. I would do this asap however as your body will quickly get used to the higher dose of a whole pill. It would also be worth checking your serum ferritin and making sure you keep your iron levels high.

Good luck. I would be interested to hear how you get on.

[Leelee49 in reply to involuntarydancer]

Thankyou ID, I had thought about cutting 1 in half so I would be having the same as you every day instead of 0.088 every other day. I’m going to give that a try, and I will try to take a break from it occasionally aswell. There’s no way I would increase it as I’ve been there before, so if it stops working I will have to try something else. I’ve been looking into kratom, so will keep that in mind. Thankyou for your reply, I will keep you posted.

[involuntarydancer in reply to Leelee49]

I use kratom when I'm not taking pramipexole (for one reason or another none of the other recognised treatment options are useful for me). It works well for the symptoms (and induces a pleasant sense of well-being) but I am just a bit more washed out the following day so it's not quite as good a treatment as pramipexole for me.

I am gradually coming to recognise also that I have to avoid taking kratom every day as I develop a physical dependency - not cravings or anything just an unpleasant withdrawal of physical restlessness which prevents sleep. Withdrawals from kratom are not too hard to cope with (far less bad than oxycontin for example) and in most people they only last about 4 days but for me they tend to go on for about 3 weeks and as I am taking the kratom to eliminate the rls so that I can sleep it completely undermines the point of it if the withdrawals mean that I don't sleep for 3 weeks!

[Yakester in reply to involuntarydancer]

How much kratom do you take?

[involuntarydancer in reply to Yakester]

I usually need about 1.5 to 2 teaspoons to cover my rls (I dissolve it in grapefruit juice) though even one teaspoon helps. I use a proper teaspoon measure. It weighs in at Aprox 1.75g per teaspoon. I generally have to take at least 2 doses of 1.5/2 tsps to get me through the night as it wears off after about 4 hours. Sometimes I take a third dose for a longer sleep.

[involuntarydancer]

By the way, Leelee, in answer to your original question, I think that you are right to be worried. Nearly all the drug treatments for rls carry some cause for concern - for one reason or another - and none of them should be embarked on without some worry!

The trick is to find a system that works reasonably well and with which the side effects are tolerable so that some sort of quality of life is possible. And also not to sleep walk into difficulties as so many of us (myself included) have done with the dopamine agonists. Worry will help us to avoid this.

[Leelee49 in reply to involuntarydancer]

Maybe I could alternate between pramipexole and kratom do you think? Say a couple of days on 1 then swap over? I’m out of my depth here, haven’t got a clue what to do for the best tbh, although I’m sure everyone has been in the same boat and won’t find out unless they try.

[involuntarydancer in reply to Leelee49]

It's so nice to have someone who is looking at similar options to my own.

I suppose that is sort of what I was doing in that I took pramipexole 5 days a week and then kratom for the other two. It worked reasonably well but the kratom days were never quite as good as the pramipexole days.

I didn't spell it out in my original post to you because it was getting long but I am now trying a new system with pramipexole since re-starting it after the 6 week gap. I am taking it every day. I am interested to see how long it continues to work for me. There is a guy who posts on the US rls forum who returned to the same dose of pramipexole as me (0.044 - but the US equivalent is 0.065) after augmenting and he has been taking it for nearly two years, in conjunction with some other meds, without augmenting so I am kind-of hoping the same will happen for me.

I have definitely found that it is trial and error with rls and also always trying to have a few options for down the line because, for me anyway, everything seems to stop working after a while.

I should admit that I am taking a few other medications for my rls which are very much off-label but which help with various aspects of it. My GP is VERY supportive and will basically prescribe what I ask so I am taking dipyridamole (also known as persantin - it is a blood thinner but there was a paper published recently and a small study found that it is potentially helpful). Unfortunately it doesn't help hugely with the urge to move but it completely eliminates the creepy crawley feeling. Also, I feel much more alert during the day since starting it. I also take low dose naltrexone - currently at 2 mg daily but shortly to increase to 4.5. It helps some people so I thought it worth a try. Unfortunately it interferes with the effects of the kratom and hasn't really helped the rls. I am going to take it until Christmas to give it a good shot. It also helps me feel well and alert during the day. I take cannabis made up into an edible most days - this helps me sleep but sadly does not help the rls. I am gradually eliminating lyrica (Pregabalin) which only marginally helped my rls and had unpleasant side effects. I am down to 25mg daily and will stop it altogether shortly.

Sorry that this is so long! I am an experimenter - my own guinea pig - and it can take a while to set out all my various treatments. I have tried a lot of different avenues and the only one that really allows a semi-normal life is pramipexole - I so wish that wasn't the case.

[RWick in reply to involuntarydancer]

A little confused about my long time US use and dosages of pramipexole. Currently cutting down a 0.25 in half and quarters. How does my dosage compare to .88 and .44 - less or more?

[involuntarydancer in reply to RWick]

Hi RWick, 0.125 is the equivalent of the European 0.088. So half of 0.125 (0.0625) is the same as the 0.044mg dose that I take. I found that a quarter pill (0.022 for us - equivalent to 0.03125 for you) was insufficient for my rls. It would be a good way to go if you are planning to eliminate pramipexole however. The more gradual the titration down the better.

[Leelee49 in reply to involuntarydancer]

I’ll say 1 thing you have going for you, the fact your gp is willing to work with you, not all of us are that lucky. I’ve had some horrible gp,s overtime, but luckily, fingers crossed, the last 1 I saw seems to want to listen to my needs and not just throwing anything at me medication wise, hopefully she won’t leave like the last good 1 did 😂. Fingers crossed for you with the pramipexole hope it stays good for you.

[Memmy in reply to involuntarydancer]

Hi ID and Leelee49, Im also on the method that ID. tried and its now2 months and still ok touch wood. I also returned to mirapex after trying most of the other recommended treatments. I alternate 4 days .44 mirapex and 3 days tramadol. I keep my iron levels up and take vitamin supplements. I had tried. even less pramipexole but it wasnt very effective..I have trouble sleeping and wake up many times at night but not because of my legs. I just hope I dont augment again. Hope this is useful.

[involuntarydancer in reply to Memmy]

Hi Memmy, Yes I found the same - the smaller dose wasn’t enough.

So glad to hear how things are going with you. Hopefully we will, all three, manage for a long time on pramipexole without augmenting.

Thanks for posting this. I hope you will keep us updated regularly.

[F_rls_N33D_H3LP]

Hi there. All I can say is I took mirapex for about 2 years. Worked good for about a year (ALTHOUGH IT DIDNT ALWAYS WORK EVERY NIGHT) then had to go up in milligrams. Started working again, then all the sudden it stopped working all together. I wasn’t aware of anything about augmentation at that time. So I guess that was all mentation will you take it so long it makes things worse. And then I got off of it and my legs were nothing less than Herendous (sp?) I don’t realize at that time either, that I was probably with drawling!! This was about 2-3 months ago now. I since have seen a pain management dr and take 10 mg Percocet and 900 mg horizant. I have an appt. in late Nov. to see an RLS specialist at Johns Hopkins bayview. I pray that will be my saving grace. The Percocet is what help me but wears off in 4 hours. The horizant helps me sleep. Once I’ve fallen asleep I don’t notice that the perc has worn off. But the horizant puts me out!!! I sleep heavily sedated for 12 hours at least. Up on and off but can’t stay awake at all!!! I’m going to reduce the 900 to 600 and see what happens but I do not work cus I can’t!! Applied for disability. But anyway I’ll tell ya, whatever it takes right now to take away the RLS is what I’m going to do because as you know, it’s just unbearable!! So all that being said, if you have to take that because it helps for now, I would! But talk to your doc. Don’t give up. Persue every safe avenue (med through dr’s care) and other sort of dr. that you think may be able to help you!! Have you seen a blood dr? I had an iron transfusion. Some have had 100% success with that, but unfortunately it didn’t work for me. Blessings, Strength and Prayers to you!!

[funnyfennel]

I take x2 prami and x1 5mg shortec (oxycodone) and if all other things are ok, it works...never sleep more than 3 hours in a row, but life is manageable...yet difficult....I cannot socialise normally as evenings do not work for me, I need to wind down. Too much excitement or even excercise late in the day will make for a rough night. I need to take my tablet at the same time every night, staggered from 7pm onward, otherwise I begin to sneeze etc...there it is...manageable but not easy.... people do not understand....