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Extended Amantadine Clinical Trials


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7 replies to this topic

#1 billybob123

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Posted 08 August 2016 - 05:23 PM

Hello everyone, I am new to the forum. Does anyone have any experience with the extended release amantadine drugs being studied in clinical trials? Are any of these trials still enrolling new patients? 



#2 Natasha

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Posted 17 February 2017 - 07:20 AM

I don't know about extended amantadine, but recently I started receiving amantadine by infusion - once in 2 week

I do feel the difference

I can stand without moving to the sides , pain in my thigh leg almost disappeared, more energy

 

Does anyone gets amantadine by infusion ? 


diagnosed Oct 2010
Azilect , Amantadine 100 mg x 1, Requip Modutab 8 mg x 1 ,Levadopa/Carb 250/25 1/4*4 (= 1 tablet a day)
Yoga , Tai Chi

#3 MurrayPD2

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Posted 17 February 2017 - 02:03 PM

I don't know about extended amantadine, but recently I started receiving amantadine by infusion - once in 2 week

I do feel the difference

I can stand without moving to the sides , pain in my thigh leg almost disappeared, more energy

 

Does anyone gets amantadine by infusion ? 

Never heard of it.  What is the difference besides oral?


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#4 Natasha

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Posted 17 February 2017 - 02:37 PM

I don't feel that amant.pills make any difference

I was sure it would not work for me via infusion

I took it only twice, so maybe it is coincidence, but the change is obvious

I had to take my levo-carbo pill 2 hours ago - and I still can type :)  I feel some tension in mussels, but it is nothing comparing with the pain I would feel a month ago

 

maybe it is a trail - I am not sure, will ask my MDS - seeing her on March 14


Edited by Natasha, 17 February 2017 - 02:39 PM.

  • MurrayPD2 likes this
diagnosed Oct 2010
Azilect , Amantadine 100 mg x 1, Requip Modutab 8 mg x 1 ,Levadopa/Carb 250/25 1/4*4 (= 1 tablet a day)
Yoga , Tai Chi

#5 New normal

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Posted 19 February 2017 - 05:47 AM

I took Amantadine for 3 mos. Put me into manic mode and I had auditory hallucinations. Also, turned legs purple. When I stopped, within 24 hrs, no hallucinations or mania. It took about a month for purple to leave. Never occurred again in over 1 year.

When side effecrs ocurred, I called doctor amd 2 pharmacists who said Amantadine doesnt cause those symptoms. I researched" white papers" of trials etc and found,Amantadine does cause such symtoms. Since fhen I have met PWP who had same reaction. Must not occurr often.....

Just sayin'

Good Luck

NN
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 6x per 24 hr. Now being evaluated by VA for "agent orange" PD.

#6 Natasha

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Posted 19 February 2017 - 08:48 AM

New normal 

my friend started taking am-n via infusion because she couldn't take it orally - because same problems with legs as you had.

she has no side effects while taking it via infusion and it helps her a lot.

 

if you are interested I can ask her to tell her story 


  • New normal likes this
diagnosed Oct 2010
Azilect , Amantadine 100 mg x 1, Requip Modutab 8 mg x 1 ,Levadopa/Carb 250/25 1/4*4 (= 1 tablet a day)
Yoga , Tai Chi

#7 New normal

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Posted 19 February 2017 - 07:43 PM

New normal 
my friend started taking am-n via infusion because she couldn't take it orally - because same problems with legs as you had.
she has no side effects while taking it via infusion and it helps her a lot.
 
if you are interested I can ask her to tell her story


Natasha,

Welcome to the forum.

I smiled at your post...cuz we with purple legs always want a friend....lol. The forum welcomes new stories and active participation.

Seriously, it was quite a trip to hear radio stations and have deep purple legs......I felt I finally had fallen off the edge. PD is always surprising us...smile...

Many PWP take Amantadine and are happy with results. Another time that reminds us we are all different. We need to chart our own destiny. Combining the input from this forum with our own research ... and partnering with our physician... allows each PWP to feel control.

Thanks for contributing to the conversations. We need you.....AND Billybob (welcome, also)

NN
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 6x per 24 hr. Now being evaluated by VA for "agent orange" PD.

#8 Natasha

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Posted 19 February 2017 - 10:32 PM

we can open a new thread - for those with purple legs - but pls don't leave me alone, take me too - I wlll be an exeption that proves the rule )

 

just want to say that it is possible that you can't take am-n orally but you can vie infusion - and it can be a great help


  • New normal likes this
diagnosed Oct 2010
Azilect , Amantadine 100 mg x 1, Requip Modutab 8 mg x 1 ,Levadopa/Carb 250/25 1/4*4 (= 1 tablet a day)
Yoga , Tai Chi




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