Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 08-19-2015, 07:44 AM #1
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by dilmar View Post
Soccertese
I have taken a long time to reply, sorry. You know that thought " I'll attend to that tomorrow.....
Background:
I started requip as my first medication 3 months after diagnosis. I tritrated up using starter pack and it took a long time for my body to fully adjust Like months. The tiredness got me a bit and some nausea but I persevered. When I was able I changed to the long acting med which is soooo much better I find. Easy to tolerate even without food and smooth delivery. I think the research is it last about 16 hours. I now divide the dose ( 8 mg am and 4mg about 5 pm). I noticed I was getting swelling in my hands when I took it later at night so I take it while still active. It gives me good night cover I think tho sometimes I need Sinemet for my tremor part way through the night.

When I changed countries I could no longer get the long acting med as it is not approved here!! so it was back to short acting three times a day. I hated it and the fluctuations I got on this regime. Added to this a general dislike of agonists by many NZ neuros including mine who decreased the dose only 2 -4 mg but it was horrid - I was an incontinent crying mess for a while. There was no suggestion of a replacement med.

I had been on the requipXL 5 years and it took a huge toll on my body this change. A holiday in Turkey and finding I could purchase XL over the counter was my salvation. My body sigh of familiarity and relief was almost audible. I now have to import it and bite my lip at the cost. I get generic which I find is fine.

So what can I add that could be helpful:
Agonists have their place but take time to adjust to and should be titrated up very slowly
Long acting is a different med experience to short acting
There is a therapeutic level needed to reach before deciding if they are useful
They do cause some oedema and of course the compulsive issues v important to know about and watch for
I still have wearing off usually after 3hours but manage to keep to 500 - 600 mg l dopa in 24 hours. (Thinking of adding entacopone). I'm in my 8th year since diagnosis now. And also take selegiline 5 mg each day.
Soccertese it's a difficult decision about using agonists with no clear answer.

thanks a million dilmar, your experience/opinion is very helpful. and thanks for your opinion nigel. i gotta extend my on times. luckily my insurance will pay for XL with prior auth. just as an aside, i know a number of people with pd for more than 10 years who seem to be doing very well, met them at a spinning class, and are all taking stalevo, amantadine and requip, not sure which formulation though.

a few questions for anyone taking the requip xl
1. what generic are you taking and do you have a preference? i only ask because there are different generics.

just curious dilmar, what benefit do you notice from the selegilene? i used to take it years ago before my symptoms became a lot worse and the main benefit was an energy boost for 1-2 hrs, but eventually stopped. how long have you been taking it?

thanks again.
soccertese is offline   Reply With QuoteReply With Quote
Old 08-19-2015, 08:49 AM #2
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
Default

soccertese,

I'm 10 years post diagnosis and doing fairly well in spite of very bad constipation and emerging dystonia. For instance, last week I did an 18 mile walk, which I would have found easy were it not for a painful lean to the left that developed during the day.

For the last 5 years I've been on Stalevo, 75mg four times per day, ropinirole controlled release 16mg once per day (though I'm currently trying it at 8mg twice per day), rasagiline (1mg per day).

Sometimes I get the brand name Requip XL, sometimes the generic Ralnea XL. I haven't done any detailed measurement of their relative effect, but subjectively I can't tell any difference between them.

The rasagiline has no obvious effect on me. This is consistent:
- either with a low but continuous impact totalling the equivalent of 100mg over a day;
- or with it having no effect.
I've not done the experiment to determine which of the cases it is.

John
__________________
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
johnt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dilmar (09-15-2015), soccertese (08-19-2015)
Old 09-15-2015, 03:31 AM #3
dilmar's Avatar
dilmar dilmar is offline
Member
 
Join Date: Jan 2009
Posts: 104
15 yr Member
dilmar dilmar is offline
Member
dilmar's Avatar
 
Join Date: Jan 2009
Posts: 104
15 yr Member
Default A late response

Quote:
Originally Posted by soccertese View Post

a few questions for anyone taking the requip xl
1. what generic are you taking and do you have a preference? i only ask because there are different generics.

just curious dilmar, what benefit do you notice from the selegilene? i used to take it years ago before my symptoms became a lot worse and the main benefit was an energy boost for 1-2 hrs, but eventually stopped. how long have you been taking it?

thanks again.
Hello soccertese
This answer may be redundant now it is so long after you posted your questions but here goes.
Re generics of requip XL I take whatever I get dispensed and it can change each 3 months. So far it has been ok with no noticeable differences in effect.
I have been wondering about the Selegiline myself. I only take 5mg/day and I think the effects are negligible, it hardly seems to extend on time but I take it at 8 am and it does give me morning energy and I feel alert, it's worth it for that I feel. I have been on it nearly 2 years.

I wonder if you adjusted your medication regime and if so have you got benefit from the adjustment.

Johnt I see my experience is very similar to yours. Regarding taking ropineroleXL in divided doses I am finding it works ok but you may be interested in one observation. At first I took the evening dose as I went to bed but I decided to take it earlier to see if it helped improve pm med control. What I noticed was that taking it between 4-6pm I no longer got oedema of the ankles and so I feel it is better for my cardiovascular system taking it at the earlier time.
__________________
"We don't see things as they are, we see them as we are."
Anais Nin.
dilmar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (09-15-2015)
Old 09-15-2015, 08:33 AM #4
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
Default

Dilmar,

You raise an interesting point regarding a possible link between ropinirol and swollen ankles. This is not something I've considered, nor tracked before. But, now that you mention it, last winter I had swollen ankles, and now, following splitting the dose, I don't. Causality? Who knows?

Once again, I'm left wishing I tracked more symptoms.

John
__________________
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
johnt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dilmar (09-15-2015)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Requip mcolo Parkinson's Disease Clinical Trials 0 04-26-2014 06:17 PM
Requip Experiences? Peony Parkinson's Disease 3 03-26-2012 12:23 AM
Requip curlydawg Bipolar Disorder 9 12-07-2011 12:51 PM
Going off Mirapex and on Requip AnnT2 Parkinson's Disease 4 07-08-2010 06:13 PM
Requip sunrich Parkinson's Disease 6 10-28-2008 02:20 AM


All times are GMT -5. The time now is 04:29 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.