One additional drug has helped me walk!


#1

On a positive note:

Diagnosed 4 yrs, 57male

Initial problems of stiffness, rigidity, slow movement, speech, expression, handwriting, sense of smell gone etc controlled with sinemet 25/100 x4 ropinorole 8mg x1 entacapone 200mg x3, citalopram 20mg x1.

Troublesome right arm tremor, but significant and most intrusive problem has been losing the  ability to walk without falling freezing, stalling shuffling overbalancing etc etc

Then along came 1mg daily of Rasagiline and bingo - in 3 weeks i started to walk a bit around the house, straightened up and dont overbalance in groups of people / supermarket aisles etc. Friends have been amazed.

I've heard it said that you'll know when you've got the medication right but I was sceptical...until now.

Doing my best to keep positive - anyone else found the addition of Rasagiline so dramatic?

 


#2

Congrats. You win all round with walking: it allows you to do the chores; it helps you socialise; and it makes it possible to exercise more.

It may be that the rasagiline just tipped the balance from being under-medicated to being well medicated. Much of the effect of the PD drugs can be explained in terms of levodopa equivalent dose, levodopa equivalent daily dose and levodopa equivalent instantaneous dose.

For instance, your LEDD is now about:

Sinemet: 400mg LED

entacapone: 0.3*Sinemet = 120mg LED

ropinirole: 20 * 8 = 160mg LED

rasagiline: 100mg LED

Giving a total LEDD of 780mg.

You can go into this deeper by looking at how long the drugs are effective for.

John


#3

Andy

That is great news!

I feel quite envious. Your description of your difficulty walking sounds just like mine. Yesterday I emailed my Neuro, asking if he could add anything to my meds that would help with my walking, which has really deteriorated this summer. Will been interesting if he comes up with Azilect (Rasagiline). I take Madopar and recently added Entacapone which has helped to extend "on" periods, but my walking is never very good now and this is really sapping my confidence in going out anywhere and so frustrating moving around at home.

Hope the benefit continues to build for you. Please keep posting your progress!


S


#4

Thats weird i went to Bristol brain centre to get my settings adjusted on dbs as my walking was getting bad again ,but it did not turn out to be any good this time so went back to old settings & started to freeze ,so my nero introduce entacapone & azilect ( rasagiline ) and bang ! my walking ,balance & health was great again. MAYBE THIS DRUG IS THE ONE !


#5

It has the effect of evening things out by knocking out an enzyme which is busy mopping up the extra (which we have not got) as  part of the body's amazing system of checks and balances.  Obviously we cannot afford for there to be any mopping up.  I am surprised it helps so far down the line.  Always lovely to hear good news.  It is rather expensive but if it has this effect on quite deb litating symptoms its really cost effective..


#6
I thought my time was up as I have very aggressive pd and have tried almost all the meds that is why I had dbs which has been really successful on my other pd symptoms tremors dyskinsia and more.But my walking as been always a problem up until now .all I can say we have the best health service in the world .

#7

Just thought i type in azilect cost &comes up $ 533.00 for 30 tablets wow


#8

 

Hi John excuse my ignorance but what does LEDD stand for?

Sheffy


#9

My apologies: I wasn't clear.

LED = levodopa equivalent dose

LEDD = levodopa equivalent daily dose

A person's LEDD is found by adding together the LED of all the Parkinson's drugs taken in a day.

The next step is to take into account the timing of the medications and how long they last for.

For instance, rasagiline has a fairly constant effect over a 24hr period, whereas a dose of Sinemet only lasts for about 3 - 4 hours. A 1mg dose of rasagiline and a 100mg dose of Sinemet both have an LED of 100mg, but the Sinemet is about 8 (24/3) times more powerful.

John


#10

 

Thanks for that John,  what for instance would my LEDD be - I take 16mg of Ropinirole XL daily, then I've been advised to add 62.5mg of Levadopa 3 times a day. What is the significance of working this LEDD out? Sorry for being a nuisance!

Regards Sheffy


#11

Levodopa Equivalent Daily Dose, LEDD, gives a very rough way of comparing two Parkinson's medication regimes, even though they may contain different drugs. It gives a first pass measure to assess plans to change a person's drugs. For a given level of functionality, it also gives a crude measure of progression.

The scaling factor for Requip XL is about 20 (estimates in the literature vary). You take 16mg per day. That gives a LED of 320mg. Levodopa, presumably taken with carbidopa, has a scaling factor of 1 so the LED from your three doses is  about 187mg. Adding these component parts together gives a LEDD of about 500mg.

Out of interest, I'm 10 years post diagnosis and my LEDD is 820mg. My medication has not changed for 5 years.

If you Google for Neurotalk Parkinson's LEDD, you'll find a lot more details and references to the literature.

John


#12

 

Thanks again John, I will google for neurotalk. Out of interest I am coming up to my sixth year of diagnosis and have been on Ropinirole from day 1 gradually increasing the dose, now my neuro says she does'nt want to increase Ropinirole any more and wants to try the Levadopa or Co-careldopa

 

Regards Sheffy


#13

hi shefinn

 

                   just to let you now co-careldopa is the generic version of sinemet ,some people get on with the generic & some don't as they first put me on sinemet then they tried to introduce me to the co-careldopa  , which i got very dsyskinetic on as it dose not distribute evenly in the body. just a heads up !


#14

 

Thanks for that Gus, I had been a bit apprehensive about going on it, the Ropinirole that I'm on is named Ralnea XL which I think is a generic, but I've been fine it. So I'm not sure how I'll be with co-careldopa plus mixing the two together as well. I've got till February before I see the PD nurse for a decision.

Thanks again for the info - Sheffy


#15

Hi everybody

Good news, I think! My Parkinsons Nurse phoned this afternoon and is going to recommend my consultant gives me a trial of Rasagiline. Hope it will work for me as it has done for others!

S


#16

thats great news supa


#17

Gus, I think you questioned somebody about generic  Rasagiline on another thread that I can't now find.

I  have just collected my first lot of Rasagiline tablets - they are not Azilect, so presumably are a cheaper generic. Made by Synthon in Spain! Time will tell if they work .

S


#18

yeah

              i thought they did not have generic version yet,but they must have as you say ,i get mine popped out for me i did at first get info papers with meds but no more they are small white round tablets with  writing  on one side saying   gil 1,i really hope they work for you that would be a great xmas gift !


#19

just had a look at my paperwork & mine say azilect then under rasaagline so think mine ok ! going to goggle yours see any info


#20

looks like there are some generic out there i find this abit unfair to start of on a generic how will you know if the real ones work before giving generic a try i think i would have a word with gp !