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.
legsbestill
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Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Tue Mar 27, 2018 6:37 am

I am SO happy with this regime at the moment. I feel normal for the first time in years. I have been taking dipyridamole for over a month now - I will amend an earlier post that says 8 weeks - I think it was about 3 weeks at that stage - I must have been tired when I posted that.

I am taking 325mg dipyridamole - 200mg slow release (which is the prescription my GP gave me - when I’m next with him I might ask for regular non-slow release to see if there’s any difference) at about 8.30pm and 125mg when I go to bed around 10.30.

I also take 0.044 pramipexole at 8.30 5 days out of 7 and I am still on pregabalin - reducing very slowly (now down to 100mg at 8.30pm) as it gives me such awful withdrawals.

The big question is will I augment on pramiprxole. Over Easter I intend to take a slightly longer break from it. I am going for a serum ferritin check on Wednesday. My GP is, I think, prepared to give me iv iron using Dr Earley’s protocol supplied to me by Dr B.

On the days when I don’t take pramipexole I have Kratom made up by my bed but although I get an urge to move through the night it is very tolerable, particularly in the absence of the creepy crawley sensational and I haven’t taken the Kratom.

This is the highest dose of dipyridamole I can tolerate. I got a very bad headache that didn’t resolve after 5 days at 350mg. In due course I will try reducing the dipyridamole to see how low a dose produces this level of relief but for now I am happy to take the wonderful sleep and the great feeling of normality.

I should point out, I don’t get full relief - I get sort of echoes of symptoms when I go to bed and early in the night but they always resolve (though each night I fret that this one is the one when the system starts to fail). I haven’t noticed the onset of tiredness or subsequent urge to move that Holland reported. The only side effect is I get extremely thirsty from late afternoon each day.

How are things going with you, Holland?

stjohnh
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Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Tue Mar 27, 2018 7:28 pm

Hi legs, thanks for the update. I really haven't changed much since I last posted, generally doing pretty well, clearly better than before I started dipyridamole.

After your and my difficult early trial experience I am starting to think that perhaps the best advice for those that are interested in trying dipyridamole that are already taking medications for RLS might be to continue current medications but add dipyridamole while simultaneously slightly reducing the dopamine agonist. For those not taking any dopamine agonist perhaps adding dipyridamole while reducing the opioid.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Tue Mar 27, 2018 10:41 pm

I've been pondering if it would be better for me to try this now, or to wait til a more appropriate adenosine re-uptake inhibitor has been identified. The idea of being able to lower my opioid dose even more than I already have is very attractive. On the other hand - - don't rock the boat. I am doing fairly well. I would hate to upset the balance, which is very fragile.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 478
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Tue Mar 27, 2018 10:42 pm

After your and my difficult early trial experience I am starting to think that perhaps the best advice for those that are interested in trying dipyridamole that are already taking medications for RLS might be to continue current medications but add dipyridamole while simultaneously slightly reducing the dopamine agonist. For those not taking any dopamine agonist perhaps adding dipyridamole while reducing the opioid.


I am now convinced my early difficulties were entirely due to a too quick withdrawal from pregabalin. They were definitely different from the profound insomnia that you described but on any analysis you are right, continuing current medications while introducing dipyridamole would seem to be indicated. Unfortunately, I am always in a rush to reduce/eliminate medications and find it hard to adopt a more cautious approach. Even knowing what I know now, I would probably have wanted to eliminate kratom and reduce pregabalin within a short time of starting dipyridamole.

stjohnh
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Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Tue Mar 27, 2018 11:06 pm

badnights wrote:I've been pondering if it would be better for me to try this now, or to wait til a more appropriate adenosine re-uptake inhibitor has been identified...


You will probably have to wait a long time, it generally takes at least 10 years to develop a new medicine and shepherd it through all of the clinical trials that are necessary to get a new medicine approved.

The adenosine paper talked about the development of new medications, but the actual paper describing the clinical trial with dipyridamole itself didn't talk about new medications, it just discussed more extensive trials with dipyridamole before it would be in broad use for RLS.
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Tue Mar 27, 2018 11:29 pm

Well, there's part of my answer. I just need to decide when, now.
thanks :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Wed Mar 28, 2018 12:55 am

I'll add my two cents worth to the future of this line of research. These are simply my opinions of what I see in my crystal ball -- 1) Dipyridamole has already been proven to be effective It might not the best compound for treatment, which we don't know, but we know that it works. 2) From some of the earlier posts on this thread, it looks like dipyridamole is already being considered for other medical applications beyond it's approved use against clotting, so it could be difficult for a pharmaceutical company to pull the same trick that they did with dimethyl fumarate when it was taken off the market as a psoriasis med before being reintroduced as Tecfidera for the treatment of MS at many, many, many multiples of price. 3) Without the financial incentive that was used for dimethyl fumarate and the fact that there are other ENT1/2 antagonists available, I don't think that we will see much interest from the pharmaceutical companies to develop something totally new with several competing compounds already on the market and 4) Since the NIH, the Foundation and others appear to be working this issue already, I suspect that we will see a slightly different approach from the "normal" 10 yr product development cycle. I am hoping that one or more ENT1/2 antagonists are evaluated against each other in clinical trials and then the best candidates start to be used off label by experts (starting with the QCC's?), sort of like pramipexole and gabapentin are currently used off label (possibly more frequently than the meds that do have FDA approval for RLS).

(edited to correct typo - ANTagonist)
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.

badnights
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Re: Dipyridamole

Postby badnights » Thu Mar 29, 2018 5:08 am

Oops, you mean ENT1 antagonist (if that sort of terminology is appropriate). It inhibits transport of adenosine into the neuron, thus leaving it to accumulate in the extracellular space, where it can exert its inhibitory effect on glutamate release.
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
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Re: Dipyridamole

Postby badnights » Thu Mar 29, 2018 5:10 am

I wasn't thinking of development of a new medication - I was thinking of existing ENT1 inhibitors other than dipyridamole, that could be tested, pick the best one, that sort of thing.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Dipyridamole

Postby ViewsAskew » Thu Mar 29, 2018 6:46 am

badnights wrote:I've been pondering if it would be better for me to try this now, or to wait til a more appropriate adenosine re-uptake inhibitor has been identified. The idea of being able to lower my opioid dose even more than I already have is very attractive. On the other hand - - don't rock the boat. I am doing fairly well. I would hate to upset the balance, which is very fragile.


Beth, I was thinking the exact same thing the other day. I have a regimen that really seems to work 95% of the time as long as I am on time with my doses. It took ages for me to get to it, but it really is decent, with my worst days on Sat and Sun, so I might even be able to work at a job regularly. But, other stuff was making me think about making some changes and that it could reduce things quite a bit...but I'd have to rock the boat violently.
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.

legsbestill
Posts: 478
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Thu Mar 29, 2018 8:39 am

:evil: It is very early days in this experiment. It could all go belly-up. I embarked on dipyridamole because although my system allowed me to sleep at night - intermittently, I really wasn’t functioning during the day. If you already have a reasonably satisfactory system why alter it? Sat and Sun are also sub-optimal on my system as I take a break from pramipexole and have some urge to move.

I will continue to post and I am sure so will Holland. If dipyridamole continues to afford this level of relief and ‘normality’ over a longer period that might suggest it is worth unpicking an existing system for.

Alternatively I suppose dipyridamole could simply be added in to an existing system without making other changes for now and see where that takes you. But adding yet more drugs ... :evil:

legsbestill
Posts: 478
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Dipyridamole

Postby legsbestill » Thu Mar 29, 2018 8:43 am

The emoji was supposed to be only at the end. After the suggestion of adding more drugs. I really need to embrace my inability to access
these sophisticated non-verbal options and stop trying.

Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Thu Mar 29, 2018 7:23 pm

This is a link to a very interesting summary paper on research of adenosine receptors and potential medications.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3930074/

I haven't read it all the way through, but there are several things mentioned that have caught my eye.
1) there is mention of a relationship with hypoxia and vascular dilation. This would tie in with the work being done at Penn State on RLS and circulation in the legs
2) there are several mentions of caffeine as a adenosine antagonist and how this has complicated some past clinical trials because they didn't control for coffee.
3) there have been several stage II and III level clinical trials conducted on adenosine antagonist meds for the treatment of advanced Parkinsons. This research was being done in an effort to find alternatives to dopamine agonists,
4) in addition to dipyradimole, the article also mentions methotrexate as an adenosine antagonist. It would be interesting to find out how many rheumatoid arthritis patients on this drug also have RLS, and
5) finding an effective ENT1 antagonist is very complicated since adenosine receptors exist in so many critical systems in our bodies.
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: 566
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dipyridamole

Postby stjohnh » Thu Mar 29, 2018 9:41 pm

ViewsAskew wrote:... I have a regimen that really seems to work 95% of the time as long as I am on time with my doses. It took ages for me to get to it, but it really is decent, with my worst days on Sat and Sun, so I might even be able to work at a job regularly. But, other stuff was making me think about making some changes and that it could reduce things quite a bit...but I'd have to rock the boat violently.



I reread some of my posts and legs posts in this thread. My primary pre dipyridamole treatment was low dose pramipexole augmented by small doses of Gabapentin, THC, and kratom.

Legs's pre dipyridamole treatment was primarily Kratom augmented by pregabalin, her doses of Kratom were fairly high so I consider her primary treatment similar to those taking opioids.

Both of us had reasonably good control of jumping legs and insomnia. with the addition of dipyridamole, neither my urge to move nor my insomnia has changed appreciably. I think this is more less true of legs that result as well. Neither of us have been able to stop our old medicines although some of them have been decreased. BUT....

Here is a quote from my 2/22 post:
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.

See next post for the rest of this discussion ...
Last edited by stjohnh on Thu Mar 29, 2018 10:00 pm, edited 3 times in total.
Blessings,
Holland

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

Re: Dipyridamole

Postby stjohnh » Thu Mar 29, 2018 9:48 pm

See prior post before reading this one.
Note that neither of us talked about a marked improvement in urge to move symptoms, insomnia symptoms, or reduction in current medications. I am starting to think this not normal feeling is a completely separate manifestation restless leg syndrome, not related to lack of sleep which I think most of us had been assuming was the primary reason for us feeling so unproductive and bad during the day. I really didn't realize how NOT normal I had felt until I added the diapyridamole to my medications.
Blessings,
Holland


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