Dipyridamole Treatment Update

[involuntarydancer]

I posted a few weeks ago that I was going to try this drug following a small study which found it helpful for RLS sufferers.

Previously I was using pregabalin (200mg) and Kratom to treat my rls. Although I got sleep on that regime, I felt really dopey and ‘druggy’ during the day.

I titrated up gradually on dipyridamole and am now taking 325mg (the max dose in the study was 400mg). Over the first couple of weeks I eliminated Kratom and reduced pregabalin to 125mg. Reducing/eliminating these caused withdrawals including exacerbated rls which made it impossible initially to assess dipyridamole.

It became apparent that dipyridamole alone was not enough to cover my Rls symptoms even after the withdrawals settled down. I would say Dipyridamole definitely muffles symptoms but I am still woken up by an urge to move. What is fascinating is that it does completely eliminate the awful crawly feeling. I thought that was an intrinsic part of the urge to move but apparently not. I hardly ever get that feeling now.

To get some sleep, I added in a tiny dose of pramipexole (half of a .088 tablet). That combination works brilliantly to control all my symptoms. I am now planning to use pranipexole at that dose 5 nights a week and take a break from it for two nights. I am hoping that at the very low dose and with regular breaks I will not augment for a while.

On this regime, I am getting the best sleep I have had in ages but the real benefit is that I feel reasonably alert and normal during the day - not nearly so druggy or dopey. This is true even when I don’t get such good sleep at night.

My next aim is to gradually eliminate the remaining pregabalin (125mg currently) by reducing at a rate of 10% per 7 to 10 days.

So far, I am really pleased with the outcome of my dipyridamole experiment and I plan to continue to take it. The imponderable is whether I will be able to maintain the pramipexole at the very low dose. If I find I gradually need more I may try introducing some Ldn as this combination seems to be successful for some. Hopefully I won’t need to ...

[Billdel]

Hey ID, it is good to see that your experiment is working. Was a little concerned, not seeing you online for awhile. I was reading your account with growing enthusiasm until I got to the part about pramipexole. That was my nemesis. I cringe when I see it in someone's account. But, it sounds like you have it well under control. Please, don't let it sneak up on you. I admire your spirit, undertaking a trial that takes you thru any kind of withdrawal! That is still too deeply embedded in my psyche, to strike out on a new RLS venture. Give me a few years

I'm now on 2, 600 mg Horizant, doing well except for the physical fog that comes and goes.

Take care and best of luck with your endeavor.

[involuntarydancer in reply to Billdel]

Hi Bd,

Nice to hear from you. Ironically, I have the exact same response as you to pramipexole. I am immediately turned off if I see it mentioned in a persons account of a new treatment.

Having been through a really bad withdrawal process I was not overjoyed to reintroduce it. However, it is nearly two years since I started to reduce pramipexole (from a final high dose of over 1.65mgs) and I have struggled ever since to find a treatment that provides enough cover and manageable side effects.

I am just about ready to acknowledge that for me the d/as provide the best treatment if I can find a way to avoid augmentation. Anyway I will see if I can maintain the current dose which, in fairness, is tiny. I am pretty sure the pramipexole would not come close to covering my symptoms at this dose without the dipyridamole.

Hope things continue good with you on Horizant.

[Billdel in reply to involuntarydancer]

Hey ID, I know you will tread lightly with the pramipexole, having been down that road, once. I wish you had access to Horizant. I know many. think it is just gabapenten with a different name. I had doubts, when my Dr. listed it at the top of the program he outlined for me. But, it has worked amazingly well. Now, as you know well, lets see if it continues to work! The problem is that it is ridiculously expensive.

You mentioned having the information for a Iron Infusion. Have you looked any further into that? I, also, received it from Dr. B. and plan to begin pressing it with my Dr. on my next visit in April.

Are you still working?

Stay healthy.

[involuntarydancer in reply to Billdel]

I am edging my Gp towards an iron infusion using the protocol dr. B sent. At the moment with so many changes in my regime I am happy about the delays as I don’t want to throw anything more into the mix.

Would be interested to hear how you get on if you go for it. How is your balance these days? Are you still not playing tennis?

[Billdel in reply to involuntarydancer]

Will let you know how it goes. He did say "if I wanted to". I think a drawback with the Horizant is the foggy physical demeanor of which balance is a part. I made a lot of improvement when I stopped pramipexope, but lost it back with the H. Will talk to Dr. about it in April. Interestingly, he has me keep a diary, which I have never done before and I am learning some things about my behavior that relate to RLS and other areas, too. I am playing tennis regularly but with much less vigor and ability because of the balance problem. Actually, I was just looking at that term - balance, and that is not quite it. Balance is actually better, but, my upper body doesn't seem to follow the straight and narrow! I bump into door frames, furniture and other similar stuff, but my balance keeps me from falling. Weird, does that make sense? I'm not sure it does to me!

2 things I have learned from my diary: I switched to a decaff coffee, and, I stay up as late as I can, before going to bed. Have never had a problem with caffeine, even late at night, but the change seems to ease the intensity and frequency of the RLS. And, the more tired I am the less I seem to have trouble with RLS and the easier and quicker I can get to sleep.

Good ,sharing with you. Stay healthy.

[antelope99]

Hi,

May I ask how you get your LDN.

[involuntarydancer in reply to antelope99]

My GP wrote me a prescription and the pharmacist sourced the ldn. It was expensive that way. I notice some people suggest getting it online.

[Hidden]

Hi, I'm hoping to try Dipyridamole as well. Just need to check with a neurologist about some other symptoms I have related to another condition.

But just to let you know my experience of coming off Pregabalin as it takes ages to settle. I thought it had made my RLS worse so tried to wean down slowly. I still think it has a worseing effect on RLS and probably in the long term even when off it. That's my 'evidence' even if not officialy documented despite it being a miracle at first.

The cutting down made me very restless. I looked up withdrawl effects for it in general ie if used for other conditions and came across 'restlessness' ie it appears to mimic RLS when withdrawing even for folk who don't have RLS in the first place. I found the last 25-50mg the worst. I got stuck on these doses for weeks. It takes ages for this to wear off so don't despair and keep at it.

[involuntarydancer in reply to Hidden]

Thanks for that Alison. I am anxious about coming off pregabalin. I reduced from 200mg to 125mg too quickly and had awful symptoms for weeks. I am now following the 10% rule so have diluted one tab so that I can take 12.5mg of it. Am planning to reduce by 10% Aprox every 8 to 10 days.

I am also conscious of its contribution to sleep, especially deep sleep so not sure I will completely eliminate it.

It would be great if you would post of your dipyridamole experience (if you get the go-ahead). One thing is it causes a headache in me for a day or so every time I increase the dose. The headaches started around 150mg so for me I reckoned this was the first dose it really made an impact on my body. Good luck.

[Hidden in reply to involuntarydancer]

Thanks ID. I know what is said about sleep and Pregabalin but I don't think it did improve my sleep as such. I am no worse off it than when on it. Around 18 months ago I got desperate and decided to restart it at 75mg hoping as I hadn't been on it for a while it would be effective again for a bit. It didn't help at all and all the side effects such as the poor balance and weight gain came crashing back. I am now off it again, looking for another answer.

[involuntarydancer in reply to Hidden]

What are you taking at the moment - I can’t remember?

[Hidden in reply to involuntarydancer]

Not very much! I try to avoid sugar ( unsuccessfully so own stupid fault - I find I'm desperate for sugar when tired - good excuse! ), am taking Ferrous bisglycinate to get ferritin to over 100 if possible - recently 88 ) and Codeine Phosphate 30mg at night some time when I feel it all coming on and can't get it to switch off any other way, and sometimes with 2 Paracetamol though Dr B says Paracetamol is ineffective.

is poorly controlled but no worse than when taking Pregabalin 125mg at one time and without the side effects.

Have also tried the magnesium powder in something called Calm - can't remember full name - but I found it unpalatable.

So not at all great but am scared of side effects of a lot of things including the stronger opiates and LDN so still searching for a decent solution.

[involuntarydancer in reply to Hidden]

It is immensely difficult to achieve a balance between keeping the condition under control and coping with the substantial side effects and potential withdrawal problems presented by the currently favoured pharmaceutical treatments.

[involuntarydancer in reply to involuntarydancer]

I am a huge admirer of Dr. B. - what Rls sufferer could fail to be when he is so generous and kind with his time and expertise to all comers?

However, I am not at all happy with pregabalin as a treatment even though gabapentin and it are the go-to recommendation of Dr. B. On top of the usually established side effects of weight gain, daytime drowsiness and balance issues, I experienced mysterious burning patches on my skin which I notice other people recording.

Moreover I didn’t find it managed my RLS - I had to take Kratom every night to get any sleep - even at 225mg (Dr. B. Does say it’s ok to go to 300mg but it’s not a great look out if you have to go straight to the highest dose - no room for any habituation).

I don’t want to start on opioids just yet - current life expectancy figures suggest I will be around for another 30 or so years and I don’t fancy being spaced out during the day (I needed 30mg if OxyContin to cover my symptoms) and wearing a cpap at night for that length of time.

For now I will stick with dipyridamole and tiny dose of pramipexole and see how I manage the pregabalin withdrawal. The fact that the dipyridamole banishes the crawly feeling is a blessing. I could almost cope with the urge to move and sleep deprivation without the awful crawlies.

[involuntarydancer in reply to Hidden]

Have you considered iv iron?

[Hidden in reply to involuntarydancer]

Thanks. Yes I have. But I don't think anyone would give it to me until it's been shown that the oral iron preparation hasn't had the desired effect. My Ferritin is still going up with the Ferrous Bisglycinate I learnt about on this forum.

Also I must admit that as with other treatments I am wary about trying something which isn't entirely necessary and which has potential serious risks. I was a Dr myself so I remember that no medical treatments are 'Smarties' as we used to describe things. Everything has a risk and I recall that occasionally folk have quite severe allergic reactions with IV iron.

I tend to treat all medicines with the utmost respect. It probably is much easier not to know what I know and trust treatment decisions but occasionally things go wrong. I'm sure that's why a lot of folk are turned down for various treatments as Drs are wary of prescribing things with risks attached. That maybe doesn't make happy reading for folk in general and I too wish so much that I could find an effective treatment. We'll see though. I still might consider it or at least ask.

I keep hoping for something both very safe and very effective as I basically can't stand what I and all of you out there go through each night and day.

[lbrosa]

If I can not get my Dr. to write a script for LDN I will try to get the Naltrexone 50mg. and make my own liquid low dose. There is reference to it on the lowdosenaltrexone.org site as well as a nice YouTube presentation that tells exactly how to do it!

[Hidden]

Also I saw something about balance in someone's reply, not sure what it related to. Pregabalin 100% definitely made my balance worse. I also have peripheral neuropathy which causes this too so I may be more vulnerable to this but it began to feel quite dangerous as when I wobbled it was hard to right myself so be aware. When I stopped the Pregabalin my balance improved to a considerable degree.

[Billdel]

Hey Alison7, I too have peripheral neuropathy. I am not sure how it interacts with RLS, but I am confident it is not complimenting it. Mine, developed as a result of chemo therapy. They said it could go away after a while. Have been taking mega doses of Vitamin B, for years, which I was told helps regenerate the nerves/milan protection, but to no avail. I hope you have had better luck with you PN. I may have been the one mentioning a blance problem and in my case, it is related to the Rx, Horizant, that I take for the RLS.

Hope you get and stay well.

[Memmy]

This sounds great. So pleased for you. I have been doing 5 days of 0.09mg mirapexin and 2 days of codeine and paracetamol (which isnt much good) for the last 6months so I will try dipyridamole instead of the codeine. I used to have tramadol but my doctor wont give it to me. It was Lotte who gave me the idea of alternating after going through hell and then having to go back onto mirapex. I just pray that this new drug is a good one and works. I'll keep my fingers crossed for you

[Memmy]

Just realised that your post was from 10 months ago. How is it going?

[involuntarydancer in reply to Memmy]

Lotte always has good, well considered, sensible suggestions. I think alternating and/or combining drugs is a good way of dealing with rls. All of the treatment drugs carry problems of their own so it is best to keep doses as low as possible and oscillating between treatments can help to prolong their effectiveness. I have recently started to reduce my dipyridamole dose as my symptoms are very much better at the moment and I want to make sure that I am not taking any unnecessary medication. If my symptoms or sense of feeling well diminishes I will resume the original dose. I hope you find a good regime yourself.

[Memmy]

Thanks for replying and so glad to hear how well you're doing. Ive just bought dipyridamole but they only sell 75mg here so my pharmacist suggested taking 150mg. I will take it tonight with 12mg codeine and hope for the best. Do you think 75mg would be effective?

[involuntarydancer in reply to Memmy]

I would be inclined to start with 75mg. I think I increased in increments of 25mg. I got a headache every time I increased the dose which lasted for about 2 days. I wouldn't start at 150mg as the headache might be worse. I increased the dose quite high when I first started. I think I went as high as 350mg in the hope that it would cause a substantial improvement in my symptoms. At 350mg I got a headache that didn't go away without a commensurate improvement in my rls so reduced back down. I still got good effects at about 100/125mg - it was as good at that dose as it was at higher doses. It may even have worked at 75mg. The effects were subtle for me so it was hard to tell when the dose was correct. I think I increased in increments of 25mg. Could you cut the 75mg tablet - or dissolve it in water and use a syringe to measure out a smaller dose?

I would be very interested to hear how you get on. My symptoms are well controlled at the moment so I have eliminated dipyridamole for now but would certainly not rule out going back onto it if things disimprove. Particularly if I again start to feel very dopey or lethargic in the daytime. I hope you keep posting.

[Memmy in reply to involuntarydancer]

Thanks for your prompt reply. I took 75mg dipydamole + a 12mg codeine and paracetamol and slept right away but I woke up after a couple of hours to a jumpy leg so I took another 75mg dip. I woke up at 7.30 with no headache and feeling fine. Tonight I'll try 150mg before bed and 8mg codeine and paracetamol which on its own does nothing. Im still going to do my rotation with mirapexin. Which of the two meds is worse do you think, the dipyridamole or mirapexin. Probably both but beggars cant be chosers I suppose. If the dip works on its own with no codeine it will be great. Do you take any other meds with it? Of course Im still on iron, magnesium and vitamin D

[involuntarydancer in reply to Memmy]

I have heard conflicting reports about the benefits/disadvantages of dipyridamole but my GP is a big fan of it (not for rls - more for heart health) and a cardiologist I spoke with recently was of the view that it was at worst 'harmless' (apart from the headaches it causes in many people); at best a useful preventative of heart disease. I don't have any medical qualifications so can't comment personally on the hidden effects of dipyridamole (it acts as a blood thinner so there is an outside chance of undetected internal bleeding) but would say that I felt well when I was taking it and, as I already stated, was more alert and 'myself' during the day - particularly when my other drugs were less than 100% effective.

On the other hand, pramipexole (mirapexin) seems almost inevitably to lead to augmentation and withdrawing from it causes dreadful suffering.

So of the two I think pramipexole is the worse.

Having said that, pramipexole is far more effective at treating my rls. I always needed something else while taking dipyridamole - either kratom, an opioid such as oxycontin or pramipexole. Whereas when I take pramipexole I don't need anything else and provided I keep the dose low I don't seem to augment too quickly or experience the impulse control difficulties that were a big problem for me at higher doses.

It would be great if the dipyridamole worked on its own for you but don't be too surprised if it doesn't. Outside of the study you referenced earlier, I haven't heard of a single rls sufferer who treats their symptoms solely with dipyridamole. Are you planning to discontinue dipyridamole while on the pramipexole cycle of your alternating routine?

[Memmy in reply to involuntarydancer]

I think I will do 5 days of mirapex and 2 with dipyridamol if I dont augment and see what happens. Im taking 0.09 mg mirapexin and it seems to be working but augmentation is a worry. If I can regulate the dipyridamole so it works well then I may increase my days of it. Lets waut and see. I'll keep in touch.Thanks for the good advice.

[Zbirth1]

So happy you found something that is helping!

[Hidden]

Hi there, I have been taking 300mg pregabalin for periodic limb movement disorder but wanted to come off it. I saw my sleep doctor this morning and he suggested I try pramipexole again. I took it previously but found I experienced fairly rapid augmentation. This time the doctor suggested also taking dipyridamole to prevent augmentation. I hadn't heard of it before now so am interested to hear that you take it as an RLS treatment in itself .

[involuntarydancer in reply to Hidden]

I hadn't heard of dipyridamole being used to prevent augmentation. I stopped taking it in the last few months as I didn't feel it was contributing much to the control of my rls but I would resume it if I thought it would assist in preventing augmentation as I am currently using pramipexole again (having discontinued it in 2016 after my dose increased hugely and I had augmented) to treat my rls and am waiting in trepidation for the inevitable augmentation.

Did your sleep doctor give you any indication of why he/she thought dipyridamole would help with augmentation? I must say they are very up to the minute to know of the use of dipyridamole in the treatment of rls at all.

I read an account of one person who found that naltrexone (at a high dose - not ldn) reversed their pramipexole induced augmentation and impulse control issues so I am taking naltrexone in the hope of prolonging the useful life of the small dose of pramipexole that I am taking.

[Hidden]

The doctor (sleep specialist) just said that dipyridamole is being used to limit augmentation and seemed confident of its ability to do so. I didn't ask how it worked as I was more concerned with any potential side affects. He explained that it was like an aspirin in respect to its blood thinning qualities (as you're already aware) and that was the only thing to be concerned about.

I haven't started taking it yet as I am coming off the pregabalin and introducing the pramipexole very slowly.

Last time I took pramipexole, I was taking 500mg at most. I started to experience limb movement in the arms as well at that point which is why I stopped it. Hopefully with the dipyridamole I can maintain a lower dose of the pramipexole.

I haven't heard of naltrexone being used to prevent augmentation so that's interesting to learn. Hopefully it works for you.

For me the meds are better than chronic sleep deprivation but they all come at a cost in terms of undesirable side effects.