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.

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stjohnh
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Re: Dipyridamole

Postby stjohnh » Thu Mar 29, 2018 10:12 pm

Rustsmith wrote:...
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.


The researchers that structured the dipyridamole trial we're obviously aware that there were other ENT 1 antagonists that could be used. I imagine that they picked dipyridamole because its side effect profile was probably better than most of the other already released ENT 1 antagonists.

The comment about methotrexate is an example. Methotrexate has been used for many years as a treatment for autoimmune diseases and certain forms of cancer. However it has very serious potential side effects including pulmonary fibrosis and immune system compromise. For the general physician treating RLS patients, use of methotrexate would have to be fantastically better than dipyridamole for the treatment of a non-lethal condition like RLS. (Though I'm sure some of us would dispute the "non-lethal" nature, particularly those of us that have to drive or contemplated suicide after having a bad night.)
Last edited by stjohnh on Thu Mar 29, 2018 10:27 pm, edited 2 times in total.
Blessings,
Holland

stjohnh
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Re: Dipyridamole

Postby stjohnh » Thu Mar 29, 2018 10:21 pm

Sorry, I haven't been able to keep my comments about the improvement in normal feeling by using dipyridamole in one post.

Legs also wrote in her post of 3/26:
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 -
Blessings,
Holland

badnights
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Re: Dipyridamole

Postby badnights » Thu Mar 29, 2018 10:50 pm

Re methotrexate , and further to Holland's comments, they specifically note the dangers of adenosine agonists in the RLS-adenosine paper (p9). That's why they tried an ENT1 inhibitor - as sort of a work-around.

Holland: I know what you mean about second half of day, and not knowing what normal is. I live alone so it's not obvious, but every now and then I have reason to pay attention to what other people do in their lives, and I know something is wrong. When do they find the time or energy to do all those things? I get home from work and have no energy for anything mental. I can go to the gym or do sports (though sometimes I don't feel like it) but I cannot do anything intellectual. Something as simple as looking up a phone number can overwhelm me. I rarely get thru the afternoon at work without a nap under my desk.

I think WED/RLS involves the disruption of a whole host of inter-related circadian processes. Our brains shut down in the afternoon and wake up again at bedtime.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Rustsmith
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Re: Dipyridamole

Postby Rustsmith » Fri Mar 30, 2018 12:28 am

My point was not so much methotrexate as an option as it was that there has been a lot of other research into potential treatments for other disorders using medications that interact with the adenosine receptors. I agree with the point that dipyridamole was doubtless selected due to the limited number of serious side effects in the proof of concept trial. The fact that the FDA declined to approve a proposed new adenosine med for late stage Parkinsons that had gotten to the third stage of clinical trials indicates how complicated this is likely to get. The important point is that there has already been a huge amount of research into treatments for the adenosine system with a number of medications already out there. Even going off label and making a huge simplifying assumption that they are all equally effective for RLS, I'm not sure that all of us would end up with the same med. As I continue to look at the side effects of dipyridamole, I suspect that the combination of my lifelong low blood pressure and low heart rate due to running might rule it out as an option for me. The last thing that I need at my age is something that will increase the chances of fainting (again) when I get up during the night to head into the bathroom. And I so much would like to find something that would allow me to get off of opioids and the hassles that they cause. I didn't realize how much my life had changed until going on vacation this last couple of weeks. They are little things, like having to keep track of time for my meds (with frequently changing time zones) and regularly having to refuse the wine at meals that I used to love. It has just driven home how much more RLS has taken from me beyond the sleep and movement issues that are a regular part of our day-to-day life.
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.

legsbestill
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Re: Dipyridamole

Postby legsbestill » Fri Mar 30, 2018 3:05 am

I absolutely agree with Holland that the most marked aspect of introducing dipyridamole is the return to feeling ‘normal’. It is pure wonderful.

I’m not convinced that the pre-dipyridamole absence of normality was a symptom of RLS. In my case I think it was caused by the drugs I was on. I suspect that if I took no drugs I would have a the same feeling of being ‘normal’ except with the grotty misery of life with untreated RLS.

I’m not 100% sure but I don’t think I suffer any insomnia as a symptom of Rls. When I don’t sleep it is caused either by the drugs I am taking (am very prone to opioid induced alerting) or disturbance from urge to move.

I am awake in the middle of the night tonight as I am taking a break from pramipexole and urge to move symptoms have woken me up. I have taken Kratom and can feel them settling down so hopefully will get to sleep soon.

legsbestill
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Re: Dipyridamole

Postby legsbestill » Fri Mar 30, 2018 3:27 am

I have pondered further on the ‘normal’ issue and possibly exercised a complete ‘u’-turn over the last few minutes. Last night I took Kratom (although less than half the dose I would have taken pre-dipyridamole). I also had 100mg pregabalin (pre-dipyridamole I was on 200mg).

I felt incredibly ‘normal’ all day - in fact extremely energetic and productive - even though I had had a disturbed night due to urge to move symptoms as I was off pramipexole.

The meds I took were identical to those I was taking pre-dipyridamole except in much lower quantities. I am pretty sure I wouldn’t have felt quite so ‘normal’ even on those lower doses if I hadn’t been taking dipyridamole. So, yes, maybe there is something in the proposition that an absence of normality - a sort of grotty lethargy -is yet a further symptom of RLS/ WED.

It will be interesting to see how I am tomorrow as the broken nights accumulate.

badnights
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Re: Dipyridamole

Postby badnights » Fri Mar 30, 2018 8:23 am

Steve wrote:little things, like having to keep track of time for my meds (with frequently changing time zones) and regularly having to refuse the wine at meals that I used to love. It has just driven home how much more RLS has taken from me beyond the sleep and movement issues that are a regular part of our day-to-day life.
so true!

legs wrote:I have pondered further on the ‘normal’ issue and possibly exercised a complete ‘u’-turn over the last few minutes.
We just don't have enough information - -but we'll keep trying to understand it. I go back and forth on the nighttime alertness issue - I know the opioids cause it, but I am sure the WED causes it too...
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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
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Re: Dipyridamole

Postby legsbestill » Thu Apr 05, 2018 11:20 pm

Just a quick update: for the last four nights I have halved my dose of pramipexole. I am now taking one quarter of a 0.088 tablet (0.022). I have also reduced my dose of dipyridamole to 250 mg (from 325). I am gradually reducing pregabalin and am now taking 90mg nightly.

On this regime I am getting almost total control of my symptoms. I can hardly believe it. I am hugely energetic during the daytime and feel like my old self. I am still taking two days per week off pramipexole to guard against augmentation and on those days I get some symptoms and sleep disturbance but nothing unmanageable.

This is a dream come true for me right now. I may even get round to finishing a novel which has languished about 95% complete for the last two years. At a minimum my long-interrupted career has some chance of getting off the ground.

ViewsAskew
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Re: Dipyridamole

Postby ViewsAskew » Fri Apr 06, 2018 1:50 am

WOW!
Ann - Take what you need, leave the rest

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Polar Bear
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Re: Dipyridamole

Postby Polar Bear » Fri Apr 06, 2018 7:52 am

legsbestill - that is wonderful.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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tea4one
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Re: Dipyridamole

Postby tea4one » Fri Apr 06, 2018 8:08 am

Thank you Holland and Legs for your willingness to push the envelope with this hopeful new approach. I am one who wrestles with accepting the limitations this damned condition has given me. But, I gain hope from articles in thr Nightwalker and hoped to find more about dipyridamole and wasn’t disappointed.
I see Dr. Ondo at Houston Methodist end this month and want to express to him how fed up I am with this insomnia or circadian disorder or hyperarousal or whatever it is that’s severely limiting my ability to live normally.
I have tried an ssri with no apparent change in sleep schedule.
I am so thankful that I’ve found my people. I plan on starting a support group here in OK as there’s nothing like being understood without having said a word.
I too am forever pushing my own boundaries attempting to better myself. To regain some if what was lost, I suppose, and I’m happy to see there others who are doing the same. Maybe some day I’ll be more accepting of this condition. Until then, I’m taking the many tips I find and adding them to my arsenal.
Thank you to everyone in this thread. God bless.

legsbestill
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Re: Dipyridamole

Postby legsbestill » Fri Apr 06, 2018 10:34 am

I am wondering if there is a cumulative effect with dipyridamole as it seems to be having an ever improving impact on my symptoms. Of course, it could just be one of those blips that I get when the legs are not a problem (at least I recall getting them way back in the mists of time when my rls was untreated - it would just stop for a while for no apparent reason). I don't think so though because symptoms return - mildly - on the days when I don't take the tiny dose of mirapexin.

yawny
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Re: Dipyridamole

Postby yawny » Thu May 03, 2018 10:09 pm

Holland & Legsbestill & anyone else,
I hope your experiments with Dipyridamole are going well…I’m wondering if you’ve had any of the side effects associated with the use of this medication, and if so, did the side effect resolve over time? I spoke to my neurologist about Dipyridamole and he’s very concerned that I won’t be able to tolerate it because I’ve had stomach discomfort (aching stomach & reflux) with a several supplement cocktails (Cortisol Manager, Stress Factors) and the muscle relaxant Tizanadine. I told him I really wanted to try it anyway, and now I’m wondering how to negotiate with the universe so that this would be the first time I’m not the small percentage that has the undesirable side effects.

stjohnh
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Re: Dipyridamole

Postby stjohnh » Fri May 04, 2018 12:03 am

Yawny, no side effects. I continue to feel better than at any time since I first started taking medication for RLS, 5 or 6 years ago. I should remind anyone interested that I am basically taking the same medications that I took before starting the dipyridamole, however I am on a significantly lower dose of pramipexole.

So I take dipyridamole, pramipexole, THC, gabapentin, and kratom.

Did your doctor give you a prescription for dipyridamole?
Blessings,
Holland

yawny
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Re: Dipyridamole

Postby yawny » Fri May 04, 2018 4:24 am

Holland, so glad to hear you’re feeling better. Yes, he gave me a prescription for 50mg (I thank my lucky stars for him, he’s an amazing doctor). We know in the study the dosage started at 100mg but he’s concerned about my sensitivity so wants me to start low. I picked up my prescription today and noticed the directions state “unless otherwise directed by your doctor, take medication on an empty stomach 1 hour prior to a meal, or 2-3 hours after a meal.” Did the study indicate if time of day was important for taking the medication?


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