Dipyridamole

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
stjohnh
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Re: Dipyridamole

Postby stjohnh » Sun Feb 18, 2018 8:19 pm

Legs. Great that you managed to get a prescription for dipyridamole. I think that it is unknown what is the appropriate dose for an individual. As others have pointed out, brain iron levels may be an important consideration as to what dose is needed. It appears as though I am more sensitive to the drug than many of the people that were used in the very small trial that we are aware of. Also people with severe restless leg syndrome may have much different responses than the people in the trial (they likely had mild to moderate RLS and may not have had the sleeping problems that people with more severe RLS have). For me I am doing okay on the medicine, it has enabled me to reduce the dose of pramipexole, which is one of my main goals. I am still using some gabapentin and THC to help sleep. It will likely be at least several weeks before I hit on a medicine combination that I think is optimal. From my experience if the 200 mg extended-release tablets that you have is too high a dose, you will have symptoms somewhat like augmentation. But it will just be for that one night.

But you are correct, getting a smaller dose of immediate release dipyridamole will allow you much more flexibility in trying to hit on what dose works best for you.
Blessings,
Holland

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Sun Feb 18, 2018 9:02 pm

I was thinking that sleepiness is primarily an effect of adenosine on the glutamatergic system and the urge to move is primarily a dopaminergic system effect.


Wouldn't it be more likely that the initial sleepiness is due to the spike in adenosine, whose role in wake/sleep is to cause a feeling of sleepiness as the concentration builds? Once you get that initial spike from the dipyridamole, it would then take a little bit for the adenosine to act via the dopamine and glutamate receptors to drop the concentrations of those two compounds sufficiently to ease the symptoms that they cause.

That is part of why I feel that this solution is so elegant. It helps return our neurtransmitter chemistry to something that is much closer to normal than many of us have experienced for years, and for many it is possibly closer than ever in our lifetimes.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Sun Feb 18, 2018 10:01 pm

Rustsmith wrote:
Wouldn't it be more likely that the initial sleepiness is due to the spike in adenosine, whose role in wake/sleep is to cause a feeling of sleepiness as the concentration builds?...

That is part of why I feel that this solution is so elegant. It helps return our neurtransmitter chemistry to something that is much closer to normal than many of us have experienced for years, and for many it is possibly closer than ever in our lifetimes.


I agree on both points. But, while more elegant, increasing adenosine in an RLS patient would only solve both the urge to move problem and sleep problem if the rest of the receptor/biochemistry system is normal. There is a high likelihood of genetic/brain rewiring abnormalities and/or biochemical abnormalities (generated by years of low brain iron, excessive dopamine, etc, etc.) making the possibility of a single drug solution less likely.

For instance, just the observation that most RLS patients sleep well when the disease is mild, but don't when it is severe, regardless of level of control of urge to move, suggests that a single drug solution may not be feasible.

And, while getting closer to the apparent root of the problem ( low brain iron), boosting adenosine is not as elegant as boosting brain iron.
Blessings,
Holland

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Sun Feb 18, 2018 11:51 pm

I think you made a comment in jest recently about needing DNA modifications. That is what some of us will require to address brain iron deficiency. The RLS genetics paper published last year by Dr Winkleman, et al. reported that the RLS variants for both the MEIS1 and BTBD9 genes are probably related to a deficient ferritin transport mechanism across the blood-brain barrier. I have both of these variants, which would explain why my recent ferritin levels were well in excess of 500, yet my RLS is as virulent as ever.

And yes, I have stopped using any kind of iron supplements and thankfully do not show any outward signs of hemachromatosis. So, I can count out the idea of getting any benefit from the iron IVs that have helped so many. I can get plenty of iron everyplace else in my body, except for the one spot where I really need it.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 528
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Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Mon Feb 19, 2018 12:24 am

Rustsmith wrote:... So, I can count out the idea of getting any benefit from the iron IVs that have helped so many. ...


Well, it's not inconceivable that an intrathecal iron preparation could be developed that could be injected into the spinal column, bypassing the blood-brain barrier.

And yes, my comment about needing DNA modifications was somewhat in jest, although I did seriously mean that that's what it would likely take to cure the illness, it's just that I am unlikely to live long enough for it to be practical for me.
Blessings,
Holland

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Mon Feb 19, 2018 12:28 am

it's just that I am unlikely to live long enough for it to be practical for me.


Holland, that makes two of us.

As for an intrathecal iron preparation, I would have to give a LOT of thought before I was willing to try that, especially since it would not be a one-time treatment (at least hopefully if I was to try I would survive so taht it would not be a single event :D).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Dipyridamole

Postby ViewsAskew » Tue Feb 20, 2018 6:09 am

I remember - a year or so ago - reading of two different studies that involved getting things past the blood brain barrier. Neither were related to RLS, but I immediately thought of us and iron. I wrote about them here. Wonder what the status of them both are?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 528
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Fri Feb 23, 2018 1:12 am

Well, I now have been using dipyridamole for a month. The first 10 days were pretty awful as I was taking too high a dose and the results were somewhat like augmentation or withdrawal from a dopamine agonist.

I tried going completely without the pramipexole and that really didn't work, and so I'm still taking pramipexole, but at a very low dose, 0.0625 mg daily.

When I take only the dipyridamole alone I quite reliably have a spell of marked tiredness starting approximately 45 minutes after taking the tablet and lasting approximately 30 minutes. That gives way to a 30 to 60 minute spell of marked urge to move. Taking the very low dose of pramipexole does away with most of that.

The dipyridamole has been a bust as far as helping me sleep. For the last couple of weeks I have been taking THC and gabapentin to help me sleep.

My current dosing is to take pramipexole 0.0625 mg at 6:30 p.m. At 7:30 p.m. I take 75 milligrams of dipyridamole, 15 mg of THC, and 100 mg of gabapentin. At approximately 10:30 p.m. I take 37.5 mg of dipyridamole, 50 mg of gabapentin and 5 mg of THC.

The overall results of this is much improved compared to when I was not taking the dipyridamole and when I was using a slightly higher dose of pramipexole. Specifically I have much more energy in the second half of the day, I have a greater tendency to actually get things accomplished as opposed to watching TV or playing solitaire, and I feel somewhat more normal, although still not truly normal. I have a little bit of urge to move starting around 4 or 5 in the evening and lasting until about 8 pm.

I go to bed around 9:15 or 9:30, most nights fall asleep within 10 minutes or so, and get up a couple of times at night briefly to use the restroom. I mostly fall asleep very quickly after using the restroom. However, I have had a couple of nights that were not as good as that, I was unable to go to sleep for an hour or two after getting up to urinate a couple of times. Perhaps because I was changing the dosing and trying to determine how badly I needed the gabapentin and when the best time to take the pramipexole in relation to the dipyridamole.

I am a little disappointed that I haven't been able to completely get rid of the pramipexole and the gabapentin. And I am still limited (by urge to move symptoms) in my evening activities, although not quite as much as before I started the dipyridamole.

Overall I am satisfied with the outcome and am definitely planning on continuing the dipyridamole. It is not a magic pill that completely solves all restless leg problems, however it is a distinct improvement over what I was taking previously.
Blessings,
Holland

legsbestill
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Re: Dipyridamole

Postby legsbestill » Fri Feb 23, 2018 11:40 am

Picking up the baton somewhat, I had my first night of dipyridamole last night. Like Holland, I was somewhat at a loss concerning dosing and timing of medications as well as what to do with existing meds. I posted my existing regime higher up on this thread although I made an error in the quantity of Kratom - I take two doses of two teaspoons each (which is aprox 3.5g per dose).
My RLS is now very much at the moderate end of severe. I only have symptoms through the night and only in my legs. Symptoms do not come on until about 10pm but if intreated they will last all night until 7 am or so. Although I know that RLS can be much more severe in its presentation, my RLS is the dominant issue in my life and it has caused severe curtailment of my lifestyle and enjoyment of life.
My aim is to reduce my reliance on pregabalin and Kratom due to horrible 'druggy' feeling and memory problems through the day. I have been reducing pregabalin already but I took the whole of my current dose (currently 175mg) at 8.00pm as usual. Reducing pregabalin can cause a whole body restlessness in me which is itself very disruptive to sleep and I wanted to give the dipyridamole the best chance.

The dipyridamole tablets I have are 25mg. I decided to take 50 mg at 8.45 and another 50mg later. I went to bed at about 10.30 and immediately fell into a deep sleep (I had had a very bad night the night before). Was woken by the legs at 12.10am and took the other 50g dipyridamole and 1.5tsp Kratom (about 2.5g which is a reduction). I did about 30 mins of stretching/yoga as legs continued but when I got into bed I went straight to sleep and slept until 10am. I was really glad I had agreed some time off work.
This amount of sleep is unusual but not unknown for me but it would be extremely rare for it to follow such a low dose of Kratom (2.5g versus nearly 7g normally). I have occasionally got through with only one dose of Kratom but that would be a dose of about 3.5g. I also feel a lot less dopey and druggy than usual.
I will be interested to see how I progress. Tonight I plan to take the second dose of dipyridamole at about 11pm (I doubt I will fall asleep so quickly after such a good night last night). It is very early days and early good results are often confounded by later experience so am not popping champagne corks yet.

stjohnh
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Re: Dipyridamole

Postby stjohnh » Fri Feb 23, 2018 4:56 pm

Assuming us early adopters continue to have some beneficial effect from dipyridamole, I expect that as soon as the paper describing the 13 person trial that was mentioned in the adenosine paper comes out, that it will be much easier for others that want to try dipyridamole to persuade their doctors to prescribe it.
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Fri Feb 23, 2018 5:02 pm

legsbestill wrote:Picking up the baton somewhat, I had my first night of dipyridamole last night....


Legs, I'd be interested to know if you have the same experience I do with dipyridamole alone. The particular thing I was wondering about is do you have a 30-minute spell of sleepiness starting approximately 45 minutes after taking the dipyridamole? Also as soon as the 30-minute sleepiness spell resolves, is it replaced with a 30 - 60 minute spell of urge to move?
Blessings,
Holland

legsbestill
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Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Fri Feb 23, 2018 10:20 pm

Holland, I was looking out for the sleepiness and ramped up symptoms but didn't experience either yesterday evening. I will keep an eye out for them and let you know.

legsbestill
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Re: Dipyridamole

Postby legsbestill » Mon Feb 26, 2018 8:58 am

I have now had four nights using dipyridamole. I use a slightly different regime to Holland as my rls comes on later. I take my pregabalin (175mg) round 8.30/9.00 and a first dose of dipyridamole (50 mg) about 30 mins later. I go to bed around 10.30. I take a second dose of dipyridamole around 11pm/12am. I had been taking 50mg then too but last night I took 75mg.

The results are encouraging but not overwhelmingly so. I have reduced Kratom intake steadily and last night I only took 1.5 tsp (about 2.5g - a significant reduction from my habitual dose of about 7g per night) in total. I took one tsp with the second dose of dipyridamole and the half tsp around 2am. Last night I also reduced my pregabalin to 150mg.

My nights have been disturbed by mild rls symptoms - much milder than I would have experienced if I had reduced the Kratom by this much without dipyridamole. I feel very much less druggy during the day in spite of being disturbed/awake. Unfortunately the length of the disturbances has been steadily increasing - I suppose this might be because I have been steadily reducing Kratom intake but I am also concerned that there may be an element of the insomnia that Holland reported. Because I am half asleep it is not always apparent to me whether I am not achieving 'full' sleep because of very mild rls or insomnia. Last night I did not go properly asleep til about 6am.

I am planning to increase the dose of dipyridamole by another 25mg tonight in the hope that it will help with symptoms, alternatively to flush out any insomnia 'proper'. I'm not sure which of my two doses to add this to. I am not planning to reduce my other drugs tonight. I may even increase my Kratom intake slightly to try to achieve better control of the admittedly very mild symptoms. I will not reduce my pregabalin dose further for another week.

I have not noticed the symptoms that Holland records of tiredness about 30 mins after taking dipyridamole and then increased urge to move symptoms 45 mins to an hour thereafter. However 30 mins after the first dose is getting close to my bedtime and I would expect to experience more tiredness then anyway so it's hard to tell.

I have a supply of mirapexin available to add in to the mix but I want to wait and see how things develop with my existing drugs before I add that in. I have refrained from using cannabis during these early days as I want things to be as straightforward as possible while introducing dipyridamole. Cannabis does not help with my rls symptoms - I use it solely as a sleep inducer. I may use it tonight to try to get a good night.

badnights
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Re: Dipyridamole

Postby badnights » Wed Feb 28, 2018 5:44 am

Thanks for sharing these experiences. Keep an eye out for the backfire insomnia as you up the dose.
Beth - Wishing you all restful sleep tonight
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stjohnh
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Re: Dipyridamole

Postby stjohnh » Wed Feb 28, 2018 4:24 pm

Legs,
I found that a tiny dose of mirapex (pramipexole), 0.0625 mg taken an hour before my first dose of dipyridamole helped quite a bit. I also found that the cannabis (as edible THC- Brownie) continues to be important for me for sleep. The main benefit I have from the dipyridamole is feeling generally quite a bit better during the daytime. I am also happy that I am on a much smaller dose of dopamine agonist. I am not using kratom at all since starting dipyridamole.
Blessings,
Holland


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