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11-10-2013, 08:42 AM | #1 | ||
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Magnate
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i suggest you join a pd support group, you may not feel like you need/want support but gleaning just 1 piece of valuable info from a meeting can more than compensate for a 1hr meeting once a month. i waited far too long in joining a group, possibly because i was hiding my pd but now that insurance companies can't discriminate against you that reason is obsolete. i suggest you buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG. it's a starting point that will help evaluate what you read on the net and on message boards. finally, research the other alternative which is carbidopa/levodopa so if you really don't like agonists you can feel comfortable with this option if your neuro suggests it. some neuros i've spoken to say pd'ers that progress the slowest seem to exercise, socialize and live healthy lives and that requires taking medication imho. |
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"Thanks for this!" says: | Rob (11-10-2013) |
11-10-2013, 10:30 AM | #2 | |||
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Junior Member
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Rob. |
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11-17-2013, 09:27 AM | #3 | ||
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Junior Member
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Visit to my neurologist came and passed.
My main issues, increasing weakness/fatigue and constant sinuses/head congestion symptoms. She (we?) is getting me off requip/ropinirole, The congestion is getting better as I reduce ropi's dose, (hopefully not just a coincidence,) the fatigue keeps getting worse. A shinny little box of Neuropro patches is waiting for its turn to throw side effects at me. (The list is as ugly as ropinirole's) Any comments on this transition? (Ropinirole->Neuropro) Rob. |
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11-20-2013, 08:03 AM | #4 | |||
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Senior Member
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Ropinirole is the most gawd awful medication that I have ever ingested
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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11-20-2013, 10:47 AM | #5 | |||
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In Remembrance
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Yeah! What Steve said!
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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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11-20-2013, 11:00 AM | #6 | ||
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Magnate
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i recently asked a MDS which agonist had the least side affects and he said NEUPRO.
bottom line, sinemet (carbidopa/levodopa) is the gold standard, not sure if you have tried it but you could do a short trial, 1-2 weeks and see how it does and if it really helps have peace of mind that there is something that works. issues with neupro are cost, will your insurance pay for it, and skin irritation. it's still an agonist so you'll probably have side affects but because it's transdermal and continuous delivery, you'll be taking a lower dose. |
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11-20-2013, 12:00 PM | #7 | ||
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I took Requip XL for years with very few side effects and a great deal of benefit. I was switched to a generic and went south and had to change to a different dopamine agonist. I've been on Neupro now for about half a year, starting at 4 mg and recently switching to 6 mg. I have almost no side effects other than a slight skin irritation when I remove the patch. I have never tried l-dopa. The other side effect of Neupro, of course, is in my wallet. I'm sure that my constant cycling enhances the effects of any medication.
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"Thanks for this!" says: | soccertese (11-20-2013) |
11-20-2013, 12:14 PM | #8 | ||
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Senior Member
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I'm not wishing to dispute with others the pros and cons of ropinirole; their experiences are valid for them.
My experiences over the last 5 years with ropinirole (the slow release version Requip XL to be precise) have been positive. I titrated up to 16mg per day over the course of 8 months. I have stayed there ever since, but with other drugs being added. The thing it does best for me is to keep my "offs" relatively shallow. For instance, I can always walk home without a problem. Also, according to the nurse specialist who treats me, she would have expected to have seen some dyskenesia by now if I'd been totally treated with levodopa based drugs. As it is, I have none. However, the downside of it for me was that it doesn't do the job as effectively as levodopa. So, when 16mg of Requip XL failed to give a reasonable quality of life, I added Stalevo, which has proved more effective. I suspect that there's a number of different types of PD and within each type people respond differently to any given drug. In this matrix structure I suspect there are areas where ropinirole works and areas where it doesn't. Has anyone seen any research into who is best on ropinirole? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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