Parkinson's Disease Tulip


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Old 11-30-2013, 04:42 AM #11
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Have you considered Low Dose Naltrexone?


Quote:
Originally Posted by lurkingforacure View Post
ST, we've tried both ways, both upping the sinemet and keeping it constant while we tried to taper off mirapex. the problem, I think, is that Mirapex helps with some symptoms that sinemet doesn't, and sinemet helps with symptoms Mirapex doesn't. Mirapex has a longer half-life, which also makes it hard to juggle quitting.


I have only read of 3 people who were able to quit: granted, there may be scores more who have been able to get off, but never posted about their experience anywhere that I found. Also, all of the posts I've ever seen about trying to quit Mirapex describe it as a very difficult and painful experience: none of that easy tapering off, adjusting to a new lever, and tapering down again as with most drugs. The most recent success story described a year-long tapering off process, literally going down .25 every week or two (or so....), and it did not sound like it was painless.

I'd love to switch to neupro patch, but our neuro isn't too keen, and I don't know why. As more people take it, I will be curious to see how it performs over a broader range of PWP and then maybe he will be more inclined to consider it.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-30-2013, 05:26 AM #12
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Quote:
Originally Posted by SarahBain View Post
I have tried Mirapex and didnt get anywhere near the 'target' dose before I couldnt stand the side effects anymore (esp. nausea) and am finding that even lowering the dose is causing side effects I didnt notice on the way up.
thx, SB
Sarah
Did you take medication for nausea each day and did you increase your dose very slowly? I haven't tried Mirapex but have been on Ropinerole for 5years. It took some months for me to slowly work up to the right dose.

I think agonists are tough meds to get used to but i find Ropinerole helpful particularly relieving stiffness and making movement easier. I haven't heard from my Parkinson friends that they find one agonist is any better than another. I do have friends who have been on Ropinerole and have found it difficult to get off the drug and I have read about the Dopamine Agonist Withdrawal Syndrome but only in the context of withdrawing after long term agonist use.

Last edited by dilmar; 11-30-2013 at 05:34 AM. Reason: Clarity
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Old 11-30-2013, 10:15 AM #13
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Head to head pramipexole V ropinirole: recollection loss.

Unfortunately behind a pay wall, but in the Abstract Shepherd et al. write [1]:

"Recognition memory (RM), familiarity, and recollection were examined in 21 patients with mild-to-moderate PD ... Patients were subdivided into two subgroups according to dopamine agonist (pramipexole [PPX] or ropinirole [RPR]), and completed matched versions of an RM test in a medicated and unmedicated condition ,.. Ten demographically matched healthy volunteers (HVs) also completed both RM tasks in two separate sessions. The PD group (PPX and RPR subgroups combined) showed impairments in RM and recollection, but spared familiarity. When subdivided by dopamine agonist, the PPX subgroup's ON-medication recollection performance was significantly lower than that of both the HVs and RPR subgroup. There was no evidence of decline in OFF-medication recollection or familiarity in either the PPX or RPR subgroups."

Note the small sample size, but the good news: some of the memory loss shown by PwP is likely to be due to the medication, rather than the disease itself.

Reference

[1] "Second-generation dopamine agonists and recollection impairments in Parkinson's disease"
Thomas A. Shepherd, Nicola M. J. Edelsty, Andrew R. Mayes, Simon J. Ellis
Journal of Neuropsychology, 7.2, Sept, 2013
http://onlinelibrary.wiley.com/doi/1...12025/abstract

John
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Old 12-01-2013, 12:32 PM #14
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Thanks for the comments...I have Alskog's book, and it is great but he doesnt say much about the multitude of Mirapex side effects - e.g I suddently got so many new 'floaters' in my visual field it scared me. I also am on Patients Like Me, and found their compiled stats on Mirapex, and thought I had a good chance of doing well on it. I appreciate the Soccertese comment about 'silent' people doing well who do not post on this or other sites, so the info. may be skewed, but I forget that when I am reading comments, so thanks for reminding me. SB
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Old 12-01-2013, 12:52 PM #15
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This is an FDA site... reports serious enough to go to that agency.

http://www.drugcite.com/?q=mirapex

keep in mind that not many make it this far, as doctors hesitate to report.
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Old 12-01-2013, 01:59 PM #16
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Quote:
Originally Posted by SarahBain View Post
Thanks for the comments...I have Alskog's book, and it is great but he doesnt say much about the multitude of Mirapex side effects - e.g I suddently got so many new 'floaters' in my visual field it scared me. I also am on Patients Like Me, and found their compiled stats on Mirapex, and thought I had a good chance of doing well on it. I appreciate the Soccertese comment about 'silent' people doing well who do not post on this or other sites, so the info. may be skewed, but I forget that when I am reading comments, so thanks for reminding me. SB
fwiw, i'm 59 and taking only generic sinemet and a few months ago got floaters in one eye. saw an opthamologist immediately to see if i had the start of a detached retina which i didn't, she didn't say anything about whether pd'ers had a higher incidence of floaters, just increases with age. might just be a coincidence that you got them but regardless, sounds like you can't tolerate mirapex.
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