RLS brought on by Clozapine

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

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.
Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

RLS brought on by Clozapine

Postby Tirisilex » Mon Jun 24, 2019 11:45 pm

I have been on Clozapine since 1999.. Over the years my RLS slowly got worst and worst because of the side effect of Clozapine. It is quite unbearable now. My Doctor sent me to a neurologist and she said I was the worst case she has ever seen. She tried me onseveral medications.. Every RLS med, Many Parkinsons medications, Over the counter stuff like Restful Legs, Iron, Magnesium, Kava Kava, Chamomile Tea, Muscle Relaxers. Nothing has worked until she tried me on Morphine. Morphine helped I was then switched to a Butrans Patch which felt like a miracle to me.. I was on it for 2 years and was doing great. Until last June I was taken off of Clozapine because I was involuntarily hospitalized. During my time at the Hospital, I was off the Clozapine and had no restless legs. Then in November I was put back on it and got my RLS back. They put me on Ultram to help but they wont prescribe me more than 50mg a day. I need like 200mg to take care of the symptoms. I hate Ultram because I get a quick tolerance to the stuff and evry 2 months I need to increase the dose. Gabapentin helps a little and can get at leat a few hours of sleep with the stuff but it is still quite annoying being woken up every few hours because it has worn off.

I NEED something other than Opioids to help me with this. I'm thinking of getting Kratom and tried to get some today but none of the sites will take a Debit Card and I'm wary of this eCheck thing and don't understand how to get it to work. Can someone help direct me to something other then Opiates to help me with this awful disease?

stjohnh
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Location: Palo Alto, California

Re: RLS brought on by Clozapine

Postby stjohnh » Tue Jun 25, 2019 12:31 am

Welcome to the RLS community Tirisilex. Lots of helpful people here who have had all kinds of experiences with RLS. Sounds like a big problem for you. What I don't see mentioned is intravenous (IV) iron. There have been recent developments in RLS understanding and treatment.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

The most effective treatments for severe RLS are DAs (dopamine agonists), Opioids, and IV Iron. Sporadically, some members report improvement with a variety of physical treatments and other medications, but consistent improvement with other treatments is not apparent.

Is there a reason you cannot take the morphine or butrans? Ultram (tramadol) acts like a mild opioid and (like kratom) is rarely strong enough to provide satisfactory relief when used alone for people with severe RLS like yours.

Kratom acts like a mild opioid for most people with RLS. While clearly helpful, it is not strong enough to be a solution when used alone for most people with RLS. Many people with severe RLS use a combination of meds. This can work better with fewer side effects than larger doses of single meds.
Blessings,
Holland

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: RLS brought on by Clozapine

Postby Tirisilex » Tue Jun 25, 2019 1:45 am

The Doctors in my state refuse to prescribe any kind of opioid because of an Opioid problem in my state. It was suggested I go to a pain clinic and I have already and they said they won't give me any Opioid because I'm not in any pain. RLS doesn't count as a viable reason for an Opioid. I had a doctor who would prescribe me some but he left to go out of state for private practice and left me high and dry with a new Doctor who won't give me any kind of opioid. I tried getting a Doctor in another town and I ran into the same problem. I want to see a neurologist again but they are backed up until November right now.

stjohnh
Posts: 973
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS brought on by Clozapine

Postby stjohnh » Tue Jun 25, 2019 2:19 am

Considering your problems, perhaps the best course would be to see one of the doctors at one of the RLS Quality Care Centers. They are well acquainted with the opioid problems. Information is at the RLS Foundation web site https://www.rls.org/treatment/quality-care-centers. You may need to travel, perhaps even out of state, but for some people that is really the only sure way to get the care they need.

In the mean time, I would try a combination of meds you can get, Ultram (or kratom) + gabapentin + low dose dopamine agonist (IE 1/2 of a 0.125mg tablet of pramipexole) + medical marijuana.

If your current doctors are helpful (except for the opioid prescribing problem), see if you can get IV Iron Infusions.
Blessings,
Holland

Rustsmith
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Re: RLS brought on by Clozapine

Postby Rustsmith » Tue Jun 25, 2019 2:57 am

Maybe if you showed a copy of this paper to the doctor at the pain clinic, they would rethink their position.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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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Location: Northwest Territories, Canada

Re: RLS brought on by Clozapine

Postby badnights » Tue Jun 25, 2019 5:36 am

Since your WED/RLS is a side effect of the clozapine, it is not clear how much IV iron will help, but it is definitely still something to look into. Have you tried different anti-psychotics? Were any others effective? If there is something else you could try that would be effective, it might not have the same side effects.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: RLS brought on by Clozapine

Postby Tirisilex » Tue Jun 25, 2019 1:21 pm

I've told my Psychiatrist that I'm open to new Psych meds.. The only Psych med that has worked for me is the Clozapine, unfortunately.

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: RLS brought on by Clozapine

Postby Tirisilex » Sat Jun 29, 2019 12:31 pm

My med Clozaril is a Dopamine Suppressor so getting a Dopamine agonist would counteract with the med I'm taking possibly making it ineffective. I'm gonna talk to my Doctor about Iron IV but I'm very wary of needles. How often does it need to be done?

stjohnh
Posts: 973
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS brought on by Clozapine

Postby stjohnh » Sat Jun 29, 2019 1:03 pm

Tirisilex wrote:... I'm gonna talk to my Doctor about Iron IV but I'm very wary of needles. How often does it need to be done?


First IV infusion set (a set is 2 infusions, 1 week apart) usually lasts 3-9 months (extremely variable, and some people don't get any benefit). Subsequent sets usually last 9 months- 2 years.

It would be a good idea to print a copy of the paper detailing the reasoning, scientific data, and dosing for IV iron and give it to your doc. Your doc likely has no idea that IV Iron is used for restless legs syndrome. Here is the link again:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub
Blessings,
Holland

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: RLS brought on by Clozapine

Postby Tirisilex » Sun Jun 30, 2019 4:28 pm

I'm thinking Clozapine is a Dopamine and Serotonin antagonist. I think the problem with me is Dopamine and not an Iron thing. Because I have read Dopamine Agonists help with RLS. That might show that it's a Dopamine problem and not an Iron. I am still willing to try Iron I just don't have high hopes for it. Taking a Dopamine Agonist might collide with and Antagonist so It might be more problem than help. Since I need the antagonist to help me with my Disease.

stjohnh
Posts: 973
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS brought on by Clozapine

Postby stjohnh » Sun Jun 30, 2019 8:44 pm

Tirisilex wrote:... I think the problem with me is Dopamine and not an Iron thing. Because I have read Dopamine Agonists help with RLS. That might show that it's a Dopamine problem and not an Iron. I am still willing to try Iron I just don't have high hopes for it. Taking a Dopamine Agonist might collide with and Antagonist so It might be more problem than help. Since I need the antagonist to help me with my Disease.


The currently accepted chain of events leading to jumpy legs (urge to move) in RLS is:

1) Brain iron deficiency (most commonly caused by genetics) causes
2) low extracellular adenosine levels, causes
3) Abnormal dopamine (and glutamate) receptor function, causes
4) Jumpy legs.

This chain of events can be interrupted at any point and the urge to move will get better.

The advantage of iron is that it gets at the basis for the problem (low brain iron) with almost no side effects. The other medicines that interrupt the chain (dopamine agonists, gabapentin and its relatives, and opioids) all do help the urge to move, but have far more side effects.
Blessings,
Holland

Tirisilex
Posts: 9
Joined: Mon Jun 24, 2019 1:34 am

Re: RLS brought on by Clozapine

Postby Tirisilex » Mon Jul 01, 2019 12:44 am

I was on Butrans for 2 years and the only side effect was a little itching. I didn't get addicted to it after 2 year use. I just dont understand that one Doctor would prescribe me Butrans and no other Doctor will anymore. I lost my original Doctor and then every Doctor I have talked to will not give me Butrans. I need the freaking MED AGAIN! I cant take this night after night of rough sleep. Cosntantly getting up and kicking my legs I cant take it anymore I need a Doctor that will just give me what I need.

badnights
Moderator
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: RLS brought on by Clozapine

Postby badnights » Mon Jul 01, 2019 6:59 pm

My med Clozaril is a Dopamine Suppressor so getting a Dopamine agonist would counteract with the med I'm taking possibly making it ineffective.

Dopamine agonists are not the best idea for WED/RLS anyway, since they usually eventually lead to augmentation. Horizant or gabapentin enacarbil is supposed to have a longer period of action that gabapentin, though it;s considerably more expensive. ALso, pregabalin (Lyrica) might be an alternative for you - it;s in the same anticonvulsant class as gabapentin and gabapentin enacarbil.

@Holland don't you think that because Tirisilex's WED is a side effect of the anti-psychotic, it is being enacted at point 3 of your list, and that therefore there might not even be a BID in this case?

However @Tirisilex, I also think that the list is tentative and we don';t really know what interactions are causing your WED, so trying the iron is probably worthwhile.

The best solution of course would be an opioid, or somehow get you off the Clozapine if you could find an effective replacement for it.

Be sure to tell your doctor clearly how the side-effect of WED/RLS is impacting your life. Most doctors don;t understand the implications and need it spelled out. They think it's a trivial thing. Tell him/her you are chronically sleep deprived and it's affecting every aspect of your life. You can't make decisions, your cognitive processes are slower, your work is suffering or your parenting or whatever applies to your personal situation, you have no social life anymore because you're too tired to hold a conversation and you can't sit still; plain old insomnia would be peaceful in comparison, but having WED/RLS is being tortured while you're unable to sleep; and it's a terrible thing to have to suffer through with no end in sight..... If you could modify that to suit your actual situation, then make sure he/she understands exactly how it's impacting you. That might help. Somewhat.

I was on Butrans for 2 years and the only side effect was a little itching. I didn't get addicted to it after 2 year use. I just dont understand that one Doctor would prescribe me Butrans and no other Doctor will anymore.
It's a sorry time in the USA to have WED/RLS that's for sure. We take such low doses and can be stable on those low doses for years and years. People with WED/RLS are far less likely than chronic pain patients to develop addictions, and chronic pain patients are less likely than the general population. None of this is considered when doctors make their decisions to cut us off.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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