thankyou all for you replies you have given me food for thought going to e-mail prof will let you know what happens.
bb xx
Hi BB
I was on a total of 12 x 0.7 mirapexin for 3 years
By the time I came off them my levodopa therapy had been in place for 3 years too and I was on 1.5 sinemet plus x 3 a day and selgeline 0.10mg
The mirapexin was immediately halved to 6 which had no impact then titrated down over a couple of months.
The longer u are on DAs the longer it takes to get off them.
The maximum dose for mirapexin is 3.14mg a day I was on 8.4 mg you were on 4.2mg.
Taking you off them is the best thing but it must be done slowly, cold turkey is not the answer.
Mine was reduced to 3 x 0.7 a day and I have got it down to 1.05mg Cr a day
This dose prevents me getting irritable like ants under the skin and extreme depression.
The problem with extended use / high doses of DA is coming off them, ive seen anumber of pwp go through mental and physical agony due to removal of these drugs.
You need to be on a maintenance dose which prevents the dysitonia and then if needed very slowly taken off the drug.
Thats my advice based on 12 years of taking mirapexin mostly over the max dose.
Thank L i am now off the mirapexin completely the new patch I am on is Rotigotine 4 mg think the dose is possibly too low after speaking with Parkinson specialist nurse from help line. My mood yesterday was very low hence my post, this morning touch wood I am ok so far. Chinese Heat rub on my legs seems to have helped. Got the idea this morning as found the only time my legs felt normal was when I was in bed nice and warm. As I said I will come back from this I have to, I have e-mailed my specialist PA today To see what can be done as to either adding another to my mix or upping the Rotigotine will post as to progress ending up in a wheelchair is not something anyone wants and I am no different. Turning 50 on Dec 10th so intend to be out with friends not stuck indoors worrying about the Distonia B**** getting hold of me.
I have not got your phone number anymore as I changed phones if you don't mind would you send it to me again via PM? Always prefer to talk these issues through with others with PD.
Regards BB.
Open E-mail to my specialist.
Hi Gill,
Please run this by Prof Sharma urgently, since being transferred to the Rotigotine 4 mg patch my distonia has gone into overdrive my worse day being Saturday spent half the day in bed and crying my eyes out every-time it got hold of me making me scared to get out of bed , it has been kicking in between 4 and 6 times daily.
My gait has also been effected as I am now more shuffling, If I do more than 4 APO-go injections I end up all zonked out. As David Smith is not available I called help line on Parkinson uk and spoke with Parkinson specialist nurse whom suggested 4 mg may be to low for me. So can I go up to 6 mg per day or add the Encapotone to my mix or will upping the Trihexyphenial help. Does this mean my stage has gone up to 3?
Don't know how much more I can take feel like I am slipping into depression. I have taken my Madopar up to 12 per day as previously suggested. My husband is of with me on Monday so I can get to hospital to collect prescription if issued.
I really don't want to end up in wheelchair because of this.
BB
Sent PM as a reply to a previous message as you are showing as not receiving messages.
L
supa
are you on rasagline aswell as entacapone yet made such a difference m walking is great now & hardly any freezing
bb
Are you on any meds for pain ie nerve pain in legs i am on gapabentin & amitripyline the amitripyline is a anti-depressant as well,do you get any ON time at all ! from your pd meds.The only reason i ask as it would be pointless added entacapone if you don't get hardly any ON time,it really sounds like you are not on enough meds if you were on too many you would get a bit dyskinetic then you could start lowering your meds at each daily time slot to you get it just right ! then if you was getting say 1- 2 hrs ON time out of a 4 hr med slot you could then ask to add entacapone to try and get your 2-3 hr ON time upto 3 hrs !
Hang on in there girl, you CAN cope with it!!!!!
I'm new to all this - including PD, not diagnosed yet, well not by my neurologist, my PD nurse is certain tho' --so am I. I've got all the symptoms including depression (for 11 months) but I do take meds for it and they seem to work.
If I can get diagnosed then I can get on the meds and p'raps get some sleep.
Good luck to everyone out there
Dizzy
BB,
It looks like Gus knows what he's talking 'bout, Why not try it
Dizzy
Hi Gus
Not on Rasagiline yet! Have emailed both consultant and Parkinson's nurse hoping they will agree to give me a prescription for it. Definitely need something! Hope to hear in a few days.
So pleased that your walking has improved. Bet your dog is pleased too!.
S
dizzy
let me get this straight
youve got a neurologist who hasnt diagnosed you and a pd nurse who thinks you have pd
how do you get access to a pd nurse if you havent been diagnosed with pd
if you have all the symptoms then you should have been diagnosed
bb
who is your neurologist is he local to you?
L
Albert chocolate labrador loves the squirrels supa..And its great walking him again my new soul mate so my wife reckons i like to think hes got some of my old labrador in him ( ebony ) r.i.p. i take him not to far on weekdays then when the college is shut over the road from me he as a good run ! his re-call starting to get better well maybe its a bit of the treats hes interested in lol .hope you get the med it seems to be working for some of us fingers crossed supa !
bb
who is your neurologist is he local to you?
L
my Neuro is based in Sheffield I have a review with him yearly and he does not adjust my med's in Lincoln I have a Parkinson specialist it is him who i have e-mailed via his PA.
But Today I can honestly say I have had a much better day 100 % better yesterday was the worse day I have ever had including the day I was dx. Walking normal even with out a stick for added support and no tears whatsoever. I said I would come back from this and I have so no asti la vista baby I am back.
BB YIPPEEEEEEEEEEEEEEE.
Hi mate I tried Amitripyline prior to Dx done nothing for me and Gapabentin gave me heart problems they changed that one to pre-gablin which belongs to the same group as Gapabentin I do get on time from my meds as it's been a recent change I have timed it today and its around 4 hrs so I am happy with that. The Distonia has not kicked in at all today so hopefully this is how I will now continue. I am definitely not going to sink in to depression just felt that way yesterday. Definitely much much happier that yesterday my mood was so low I would equal it to the day I lost my mum that was the worse day of my life and yesterday is on a par with how I felt then. But as I said I will come back from this and I am back fighting this B**** like I always have.
You all know me well enough to know that I would be back well I am................................
Thank you all for your support and understanding it really is greatly appreciated.
BB XX
Hi BB
Good to hear you've had a better day. The only predictable thing about PD seems to be its unpredictability!
Let's hope the week ahead goes well and we both get speedy and satisfactory responses from our respective consultants.
Thinking positive,
S
great news bb. i would have a word about entacapone to see if you can get some more on time ! all the best gus only up this late letting new dog out for peee
Hi BB
Is that Professor Jagdish Sharma of Lincoln County Hospital?
He has some interesting ideas re pd.
L