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Stopping Mirapex

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#1 tswrace

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Posted 13 February 2014 - 02:33 PM

I appologise for taking time on this forum from so many people that are seriously ill with Parkinson's Disease and for the length of this post. 

 

I too am seriously ill but my disease is Post-polio Syndrome.  The comnmon symptom of the two that brings me here is Spasms.  I have had spasms for 15 years.  I also have chronic fatigue that disables me everyday at 12 Noon.  Since 2006 the spasms begin within 45 minutes of me laying down and closing my eyes. 

 

I had a stroke in Dec. 2010.  I was introdiuced to a neurologist in the hospital that said she was going to "cure" my spasms.  She prescribed mirapex (pramipexole) for me begining at 0.5 Mg.  I complained to her from the first dose about the insomnia that the mirapex caused and later about the constipation.  The doctor would never do anything but deny that mirapex caused the problems.  I began splitting doses and taking them earier in the day to reduice the insomnia.

 

In June od 2012 the doctor increase my dose of pramipexole to 1.0 Mg. per day.  I began taking the dose at 1:30 PM to avoid insomnia.  For the next year I experienced sleep deprivation, 4-6 nights a week with less than two hours sleep, or no sleep at all.  The doctor refused to adjust me mirapex in Dec. 2012 when I was unable to leave the house to make my appointment with her.

 

In Aug. 2013 I began seeing a psciatrist for mental things that were happening to me.  I described what was happening to me and he immediatel said that it was being caused by the mirapex.  I was having hallucinations.  So I had gone through a year of sleep deprivation and hallucinations because of the mirapex.

 

If I reduce the mirapex the spasms increase in frequency and severity immediately.  The Psych. and I have tried several medication to replace the mirapex without any success.  Those medication are metaxalone, amantadine, methocarbamol, and baclophen.

 

Could you please help me with suggestions for medications that will allow me to discontinue the mirapex without incurring more ontoward side effects?

 

Thank you,

TSWRACE



#2 MComes RPH

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Posted 16 February 2014 - 12:11 PM

I see why they prescribed the Mirapex, but it is not truly a first line med for spasms. Personally, I think the other muscle relaxers may not have worked because of the Mirapex, because if you give Mirapex to someone who does not have Parkinson's Disease can cause spasms.
I can see why they did it, because low dopamine levels-below 20% of all your dopamine) brings out Parkinson's symptoms. If you just had spasms and no other Parkinson symptoms, I don't believe Mirapex was correct. Now Mirapex can help restless leg syndrome, but that is not spasm, it is just constant movement.
Truthfully, the antispasmotic meds you mentioned, at least one should have taken care of the spasms if given at the correct.
What I would recommend is to see a neurologist that is also a movement disorder specialist. They are very specialized in the the aspects of symptoms of MS, Parkinson's Disease (PD), and other issues of similar symptoms.
I think what you need to talk to them about is:
1) Do you really need Mirapex, and if they believe you do, you need to let them know the issues you are having. Because the issues you ate having are those of someone who is taking too much Mirapex if they had PD. I think they will probably taper you off the Mirapex and look at the symptom at hand....Spasms.
2) As far as the muscle relaxers that are available, there are 2 types:
a) ones that work in the brain center and sends signals to the muscle to
relax. These would be Flexeril, Soma, and Skelaxin
B) the second type of muscle relaxer is one that works from the spinal cord
outward. This is the type that is used in MS, PD, and I believe would be the
one, at the correct dose, would give you the most relief. I see that you tried one
,Baclofen, and the other is Zanaflex. I have tried both, and most people with PD
or MS, have found good success with Baclofen. It works on a chemical that is beyond the spinal
cord at the point of the spasm. Baclofen can be taken at a max dose of 20mg 4 times a day.
I hope this info helps and please keep me posted. I am not only here to help people with PD, I am here to help anyone with question.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#3 MComes RPH

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Posted 16 February 2014 - 12:20 PM

I see why they prescribed the Mirapex, but it is not truly a first line med for spasms. Personally, I think the other muscle relaxers may not have worked because of the Mirapex, because if you give Mirapex to someone who does not have Parkinson's Disease can cause spasms.
I can see why they did it, because low dopamine levels-below 20% of all your dopamine) brings out Parkinson's symptoms. If you just had spasms and no other Parkinson symptoms, I don't believe Mirapex was correct. Now Mirapex can help restless leg syndrome, but that is not spasm, it is just constant movement.
Truthfully, the antispasmotic meds you mentioned, at least one should have taken care of the spasms if given at the correct.
What I would recommend is to see a neurologist that is also a movement disorder specialist. They are very specialized in the the aspects of symptoms of MS, Parkinson's Disease (PD), and other issues of similar symptoms.
I think what you need to talk to them about is:
1) Do you really need Mirapex, and if they believe you do, you need to let them know the issues you are having. Because the issues you ate having are those of someone who is taking too much Mirapex if they had PD. I think they will probably taper you off the Mirapex and look at the symptom at hand....Spasms.
2) As far as the muscle relaxers that are available, there are 2 types:
a) ones that work in the brain center and sends signals to the muscle to
relax. These would be Flexeril, Soma, and Skelaxin
B) the second type of muscle relaxer is one that works from the spinal cord
outward. This is the type that is used in MS, PD, and I believe would be the
one, at the correct dose, would give you the most relief. I see that you tried one
,Baclofen, and the other is Zanaflex. I have tried both, and most people with PD
or MS, have found good success with Baclofen. It works on a chemical that is beyond the spinal
cord at the point of the spasm. Baclofen can be taken at a max dose of 20mg 4 times a day.
I hope this info helps and please keep me posted. I am not only here to help people with PD, I am here to help anyone with question.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#4 tswrace

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Posted 16 February 2014 - 01:12 PM

Dear Mr. Comes,

 

Thanks you very much for your reply.  My original message was getting so lengthy I only hit the high points and left out a lot of details.  One of those details is that at 15 Mg. of Baclofen I had an overdose reaction. 

 

I was taking Flexeril at 30 mg. at bedtime and had problems with the vengeful return of the spasms when, after a small stroke in Dec. 2010, the neurologist assigned to me at the hospital did an abrupt cessation of the medication.  I spent the next six months, after returning to the maximum dose of Flexeril, having spasms keep me awake until the wee hours of the morning before I could fall unconscious for a few hours.  Fortunately, after six months I remembered the spinal surgeon that did my neck surgery in May 2010 had given me a prescription for Soma which I had on the shelf.  I began taking Soma then and continue to this day.  It takes 1050 Mg. of Soma , in staggered administration, to counteract the Insomnia from the Mirapex.

 

Another complication is that in Jan. 2012 I was diagnosed with congestive heart failure.  My cardiologist tells me that the diagnosis is a technical one and he is treating me for atrial fribulation with 250 Mcg. per day of Digoxen.  However, the information I had from www.drugs.com said that Flexeril is contraindicated for patients with CHF..  So I used Orphenadrine ER 100 Mg. twice a day to get off of the Flexeril.  Fortunately the Orphenadrine gave me a seamless discontinuation of the Flexeril.  However, my medication manager, the psychiatrist, got an advise from my insurance company that people my age, 68, should not be using Orphenadrin.

 

Still anytime I attempt to reduce the Mirapex I have a rapid increase in frequency and intensity of the spasms.  The benefit of the Soma is now I at least get some sleep.  The downside is it is a large dose and I am observable mentally oppressed every day.  So I have learned to go slow and be very careful when moving about the house of performing  any kind of tasks with tools or cooking.

 

I am going to begin looking for a neurologist with movement disorder specialization Monday morning.  If you are aware of any that practice in the Santa Cruz, San Jose, San Francisco areas of California I would deeply appreciate a referral.  The fact is while I live in Santa Cruz County I get all my serious medical treatment done in San Francisco.  San Francisco has a better and larger variety of medical services available compared to Santa Cruz.  So if you know of a neurologist in San Francisco you can recommend please do not hesitate to do so.

 

Once again thank you very much for all your help. 



#5 MComes RPH

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Posted 16 February 2014 - 02:21 PM

With these extra issues you have informed me of, you definitely need to see a specialist. I actually spoke at a Parkinson symposium in San Francisco and there is a great neurologist clinic in San Francisco. Here is the info:
Parkinson's Disease and Movement Disorders Clinic
400 Parnassus Ave.,
Eighth Floor,
San Francisco, CA 94143
Phone: (415) 353-2273
Fax: (415) 353-2898
Hours: Monday to Friday8 a.m. – 5 p.m.
Now there is a Dr there who is a neurologist who is also a sleep disorder specialist, I do not know if he is a Movement Disorder Specialist. He is Dr. Graham A. Glass.
This clinic has neurologists who specialize in all aspects of neurology, from epilepsy to vascular to Parkinson's.
I am sure you can find what you need there.
Good luck and keep me posted.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#6 miracleseeker

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Posted 16 February 2014 - 04:15 PM

Mark,

 

This is the first time I've heard someone take Mirapex and have insomnia.  Does this only happen to people who take it and not have PD?  You know my mom sleeps like 20 hours a day from it and I cannot get her off of it.



#7 tswrace

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Posted 16 February 2014 - 06:54 PM

Thanks you very much.  I recognize the address as UCSF Medical Center.  I will be in touch with them this week.



#8 tswrace

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Posted 17 February 2014 - 01:17 PM

Hi Mr. Comes,

 

The fact is no one has ever attempted to diagnose the cause of my spasms, even when I have asked them to do that..  I have seen the founding neurologist in Post-polio Syndrome in Amsterdam, the Rancho Los Amigos Post-polio clinic in Los Angeles,  and Post-polio physiatrists in both locations.  Medical research has documented that the polio virus damaged 95% of it's victims nerve neurons even if there was minimal physical impairment.  So the assumption has been made that my spasms are a condition caused by my Post-polio syndrome.  What happens when I visit a neurologist is the neurologist confirms the diagnosis of Post-polio Syndrome and then sends me to a physiatrist who builds a brace for me.  The story they give is that the brace will make walking easier, relieve some of my fatigue, and correct some of my gait.  I am not hesitant to say that none of that is true.  I have tried wearing the braces for several years, first on one leg and then on the other, and none of the advertised benefits ever developed for me.  In fact just the opposite was true.

 

I have looked at the movement disorder clinic and Dr. Glass at UCSF.  The prospect of possibly seeing a neurologist that might try to independently diagnose the cause of my spasms is enticing.  However, experience tells me that once he hears that I have been diagnosed with Post-polio Syndrome by other neurologists he will simply defer to that diagnosis and no independent work will get done. 

 

With the chronic fatigue I have from the Post-polio Syndrome (PPS) I have to budget my time.  On a good day I get three hours of lucid time and then the fatigue begins and any decision I make is compromised.  So I am struggling with a decision of whether the time and effort to see Dr. Glass will lead to someone actually trying to diagnose the cause of my spasms or whether, like those before him, he will attribute the spasms to PPS.

 

All of that said all I really want to do is get a consultant pharmacist or physician who can titrate me off of the mirapex with a substitute drug that has less ontoward side effects and then do the same for the orphenadrene.  I have trouble appreciating the need to dedicate the time for beginning a new diagnostic regimen with yet another doctor.  Recalling it was the doctors, two neurologists, that got me into this mess to begin with it seems like I would be repeating the same process expecting a different result. 

 

I appologise if this all sounds very cynical to you.  I appreciate everything you have said and I am grateful for your assistance. 

 



#9 MComes RPH

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Posted 11 March 2014 - 11:38 AM

As far as the insomnia from Mirapex, it mostly happens when someone takes it who does not have PD or some whose dose is a small amount over the therapeutic limit. Or, it could just be one of those rare occurances where some has the opposite effect of the normal. Like people who take benadryl and are wide awake. Everyone acts different.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#10 MComes RPH

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Posted 11 March 2014 - 11:44 AM

As far as telling them you have been diagnosed with PPI, all you really have to tell them is that you had polio a long time ago and the physicians are baffled at what this issue is. I think that may be the best way to get around it. It is not lying as long as you tell them what meds you have used and the result.
Keep me posted.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#11 MComes RPH

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Posted 14 March 2014 - 03:27 PM

I found some info on AMANTADINE and post-polio syndrome, hope it will give you some info we did not hit on.
What Is It?

Post-polio syndrome is an illness defined by a collection of symptoms that generally occur at least 10-20 years after infection with the polio virus. The hallmark of post-polio syndrome is new muscular weakness. This may present as weakness in the arms, legs, or trunk or difficulty with swallowing, talking or breathing if the muscles that control these functions are affected. Other symptoms of post-polio syndrome include muscle pain, fatigue and cold intolerance. It is not uncommon for polio survivors to have new weakness in muscles that were previously believed to be unaffected by polio. This may be because they really weren't sure which muscles were affected many years before, or because muscles were so mildly affected at first that doctors didn't detect it on physical examination at the time of the polio virus infection.

Polio is a disease caused by an infection with the poliovirus. From the early 20 th

Century through the 1960's in the United States, epidemics of polio affected many people. The creation of polio vaccines has practically eliminated polio in the United States, and most of the developed nations of the world. However, people in the U.S. and elsewhere who were infected by the virus before vaccines were developed can develop post-polio syndrome.

To understand post-polio syndrome, you need to understand what happens in polio. In a small number of cases of polio (less than 10%), the virus will attack the cells in the spinal cord and cause paralysis. However, many people who were infected by the poliovirus did not develop paralysis. Fortunately, many just had typical symptoms of an infection — fever, aching muscles, fatigue, etc. — that lasted a few days, and thereafter regained complete health.

Others may have had mild muscular weakness, so mild that neither they nor their doctor noted it. Along with patients who developed obvious weakness (paralysis), patients with milder weakness are at risk for getting post-polio syndrome decades later.

It's not clear how many polio survivors will be affected by post-polio syndrome. A reasonable estimate is 60% of those who had significant paralysis during the initial illness. It's also not clear why some polio survivors develop post-polio syndrome while others do not. Likely it has to do with multiple factors.

One theory is overuse of the nerves and muscles that remained working after the initial infection. For example, if some of the nerves and muscles that are necessary for leg strength are damaged, the remaining nerves and muscles of the legs need to work harder to compensate. After many years of having to work harder, these nerves and muscles become exhausted. Some of them even die. This then forces the nerves and muscles that are left to work even harder, and so a vicious cycle sets in.

Polio that affects the spinal cord usually destroys many of the motor neurons (nerve cells) that control the muscles of the body. During recovery from polio, you can't build new nerve cells. However, you can create new connections between surviving nerve cells and muscles, so you can recover your muscle strength by "re-wiring" your nerve connections. This is an effective way for your nervous system to compensate for polio, but it may be temporary.

Normal aging likely also contributes to new weakness. Nervous system damaged by polio years earlier goes through a natural aging process that includes the loss of some strength.

In addition, as the years pass, nerve cells can be disabled or damaged by illness, injury, your own immune system or natural aging. Delicate connections between nerves and muscles can be lost during periods of inactivity. If you are already relying on a smaller number of nerve and muscle cells than is normal, then this loss of other nerve cells over time might leave you more susceptible to weakness that you might not otherwise notice.

One theory for post-polio syndrome is that some of the poliovirus remains alive in the brain and spinal cord. This theory is controversial, because there is little evidence for it.

People usually are affected by post-polio syndrome during middle or late adult life, decades after they first developed polio, after a long period of stability. The new symptoms sometimes emerge after an illness or injury.

Symptoms

Major symptoms include muscle weakness, pain, fatigue and, in some cases, wasting (atrophy) of the muscles that were involved during the polio infection, typically the legs. Additional problems can include intolerance to heat or cold, and difficulty swallowing, talking, breathing or sleeping. The syndrome also can cause abnormal muscle contractions, such as quivering or spasms, in small segments of a muscle. Worsening disability may cause social and psychological problems.

Diagnosis

There is no specific test that diagnoses post-polio syndrome. Instead, the diagnosis is made by confirming an old history of polio (based on history, physical examination and a muscle test called an electromyogram, or EMG). In addition to these, there needs to be a period of partial recovery after the initial illness and a long stable period without new symptoms (at least 10-20 years). Finally, other reasons why someone may be experiencing new symptoms need to be ruled out.

Your doctor will ask about your medical history, especially your history of polio. A neurological exam can identify muscle weakness and atrophy. An EMG can help to diagnose this disease. In this procedure, small needles are inserted into several areas of muscle. Of note, EMGs are often done in conjunction with another test called nerve conduction studies (NCS) which don't typically use needles but instead have surface electrodes that deliver small amounts of electricity to test the nerves. When the diagnosis is uncertain, an electromyelogram can help to sort out whether weakness is caused by a muscle disease or by nerve problems.

Expected Duration

Post-polio syndrome worsens slowly over time.

Prevention

In people who have a history of polio, there is no good way to prevent post-polio syndrome. Obviously, the way to prevent post-polio syndrome in children and adults who never had polio or the polio vaccine is to prevent polio itself through vaccination, when recommended by the doctor.

Treatment

Specific treatment for post-polio syndrome includes a multi-disciplinary rehabilitation approach. Physical therapy may be used to increase muscle strength and endurance and to help with improving balance and preventing falls. Occupational therapists can address upper extremity problems, especially overuse injuries, as well as recommend adaptive equipment for your home and/or office. Speech and language pathologists evaluate and treat swallowing and speech problems. Orthotists can fit you for an up-to-date brace.

Neurologists and physiatrists are usually the physician specialists who care for people with post-polio syndrome. Physiatrists are doctors who specialize in Physical Medicine and Rehabilitation (PM&R) and can help to both establish the diagnosis and treat any symptoms. Both physiatrists and neurologists are often trained in performing EMG testing.

For treatment, these doctors may prescribe medications to help with pain and/or fatigue or perform injections. They may recommend sleep studies and prescribe treatments that help with breathing at night. They can write specific therapy orders, brace prescriptions and help coordinate the multi-disciplinary interventions. Complications that involve swallowing or breathing disturbances (such as sleep apnea) require specific treatments. Examples might include using different positions during meals, or an air-pressure mask and machine that can be used during sleep to support breathing. Counseling with a psychologist or vocational counselor can help with psychological or occupational adjustments. Support groups offer education, support and social opportunities.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#12 tswrace

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Posted 25 March 2014 - 11:51 AM

Hi Everybody,

 

I apologize for my long period of silence.  I did not have an internet connection from the 1st of March until late last week.  I am still working on catching up.  I just want to let everyone know I had not forgotten this list.

 

I found a consulting pharmacist who recommended I replace the Mirapex with a 1:1 dose of Requip titrating .25 Mg. for a week at a time.  I am now at the end of my first week of titration and thus far I think it has been successful. 

 

I begin my second step in the titration today so I will see how it goes and let you all know when I have more information.

 

Thanks to all of you for your support.



#13 MComes RPH

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Posted 31 March 2014 - 10:56 AM

Like I said, many people who have bad side effects can change to requip and have no problem. I have also seen the opposite happen, though not as often.
It is very odd because they are in the same class of medications, but it is believed that the Mirapex may "hit" an extra dopamine receptor that requip does not,
Thanks again.
Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org

#14 MComes RPH

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Posted 31 March 2014 - 10:57 AM

Hi Everybody,
 
I apologize for my long period of silence.  I did not have an internet connection from the 1st of March until late last week.  I am still working on catching up.  I just want to let everyone know I had not forgotten this list.
 
I found a consulting pharmacist who recommended I replace the Mirapex with a 1:1 dose of Requip titrating .25 Mg. for a week at a time.  I am now at the end of my first week of titration and thus far I think it has been successful. 
 
I begin my second step in the titration today so I will see how it goes and let you all know when I have more information.
 
Thanks to all of you for your support.

Like I said, many people who have bad side effects can change to requip and have no problem. I have also seen the opposite happen, though not as often.
It is very odd because they are in the same class of medications, but it is believed that the Mirapex may "hit" an extra dopamine receptor that requip does not,
Thanks again.


Best of health,
Mark R. Comes R.Ph.
"Ask The Pharmacist"
www.parkinson.org





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