Medication Decision, Pre diagnosis


#1

I have visited a Consultant Neurologist his conclusion is "The diagnosis is almost certainly idiopathic Parkinson's disease. I think this will be confirmed if his DAT scan (20th Feb 2014) shows the expected appearance."

He offered me a choice of Levodopa or a dopamine agonist (Ropinirole, ReQuip XL).

I decided to take the Ropinirole but await an appointment with my GP on Thursday this week. I thought, after speaking to the Neurologist that this would be the best path to take. I hope it will give me the best chance of the longest time with a good quality of life.

I am worried that I have not made an informed choice and wonder if anyone else had this decision to make and how it worked out for them.

My symptoms are tremor, stiffness, balance problems, fatigue and disrupted sleep pattern.

thanks and regards

 


#2

hi 

i was started on requip xl when diagnosed in sept but had no effect so then added in sinemet.now much better. try it and see ...it takes time to sort exactly what you need


#3

Hi Kairos

I was started on Ropinirole XL slow release in 2012, been on it for two years now and it suits me fine, but you must be aware it does not suit everyone because of side effects, I started on 2mg a day and now take 14mg a day, with no other meds, which I regard myself as pretty lucky. I had the exactly the same symptoms as you with one added extra, cramp in my legs at night. The doctors will soon sort you out with the right meds but it is all trial and error. I also was Diagnosedwith ideopathic parkinsons

Good luck

Sheila


#4

Hi Kairos, a similar story to Shefnn, though my DA of choice has been Pramipexole, which I was on for the first two years or so  before we added some good ole Levodopa. There's some research around somewhere, can't lay my hands on it now, that says there's no particular benefit in holding off the Ldopa from newbies. I suspect Neuros start with a DA as much to have somewhere to go as because there's a clincial indication to do that. Which is fine. 

Best wishes

Semele


#5

Thanks very much for responses. I have picked up my prescription of Requip XL and will start taking it tonight. 2 mg rising each 2 weeks up to 8 mg. don't like the look of the side effects of sickness and sleepiness.  Hope I am not too badly affected. I can talk it over with my doctor on Thursday.

 

regards

Kairos


#6

Hi Kairos, When I was diagnosed (Oct 1999) the then fairly new dopamine agonists, Mirapexin (Pramipexole) and Requip (Ropinirole) were the preferred choice to start patients on, especially the younger ones (under 70 years at least) as it was hoped the delayed start on the most effective drug (levodopa ) would give them better quality of life for longer as it would delay the start of diskynesias (involuntary movements) which generally appeared after several (5-10) years on levodopa medication. Since  then there has been more research looking for evidence to support this theory, but they found there was no significant advantage delaying the levodopa treatment.  You will find, like Semele wrote, several publications on this  subject( on medscape or pubmed for instance). Ropinirole will give you more side effects than levodopa. The main thing , though, is to start on the lowest dose  and only take more if really required to suppress symptoms,  after all that is all you get from the pills, there is no cure yet, I started in 2001 on Pramipexole and added  a levodopa product (Sinemet)  in 2006. 


#7

Hi all

I was diagnosed in October 2014 but have not taken meds through choice, however I have been prescribed 62.5mg of sinemet 3 times a day

My main symptoms are tremor in right arm, worse when agitated slowing down a bit in general plus I have fallen backwards  a few time over the last year.

My question is because I cant get the answers I need from doctors is should I start taking them now and is Sinemet the right one ?

Cheers Nick


#8

 

Hi Nick

I refused meds for 12 months (was diagnosed in 2011) started taking meds in 2012 because my health had deteriorated so much, I started on 2mg of ropinirole  XL slow release, and nearly 3 years later I  am now on 14mg of the same with no other meds. I myself seemed to know as and when I needed to take medication and I havent looked back. It's all trial and error with the meds, you have to try them to see if they improve your symptoms,if not ask your neuro if you can have a different med

Good luck Sheila


#9

Thanks for your reply,

I am much the same I will start when I know i'm ready

Cheers

Nick


#10

Can someone please advise what level of recovery I should expect once my meds are right?

I had to give up my contract job because of symptoms and I worry if I can work again. I dont know what type of job I should try and get. I am 44 and too young to retire, and cant afford to.

regards

 

Bruce


#11

Hi Bruce,

The medications can give you back near enough 100% control once you dosage is right. don't worry about work that will cause you stress and that's the worst thing for you additionally you are also entitled to personal Independence payment. This has replaced disability living allowance and it's non-income based its about your condition and how it affects you So if you decide to make a claim for it, it is dealt with by the Department for work and pensions you have to tell them how you feel on your worst possible days whether or not it I s causing you depression if you need help doing things that you would normally do on your own like getting dressed getting in and out the bath situations that are bad for you pertaining to your condition you must tell them is that is what they will be assessing. Also unfortunately we still have to pay for our tablets so I would recommend you get prepayment card pick up the application form up in any pharmacy and you can organise a direct debit to pay for it monthly that way is not paid out great big lump sum all in one hit PIP application is not quick Mine took seven months to come through let me know how you get on Bruce Take care and best wishes BB

 


#12

hello bb, if your out of work or both of you or yourself on a low income think its about 16,000 you can apply for hc2 form  this gives you free meds,dental & help glasses.if your really bad you can apply for fp92a form from gp prescription exempt form fill in .........A continuing physical disability prevents you from leaving home. BAD DAY !  Quote this when you get someone to pick up forms !Then fill in give to gp to sign & send .Then you get a card for free meds 8yrs DONT TELL YOU THAT DO THEY !


#13

              Kairos

                         My wife got her PIP a few weeks ago and it took 13 weeks. Get a support worker from PDuk to fill the forms in with you, they are very  good

                           Billywhizz


#14

Hi gus, thank you for that info I am not in that position yet but I will defo keep the details specialy as today I have found out my employers have announced 30 redundancies and I am convinced my card is marked.

 

kind regards BB 


#15
all the best bb

#16

My PIP claim went in 9 weeks ago , they told me 16 weeks before I get an appointment.

I don't have a PD support worker so filled everything in myself , or my wife did as writing is very tiring for me.

That's interesting about free prescriptions, will give that whirl.


#17

I've got a medical next week regarding my PIP application ,

Is there anything I should be aware of ?

Cheers NTM


#18

 

 

if it's anything like a esa assessment my advice is don't be tempted too play down how your condition effects you in how you answer questions e.g they might ask can you cook a meal??, if you find cooking yourself a meal difficult and feel unsafe doing so then the true representation is you cant cook for your self safely, base your replys on your worst day.


#19

yeah. your right there angler ,mod take all your medication with you also when you walk say in consent pain,need help doing clothing up ,help  washing yourself raising arms above shoulders,pictures of any grab rails,bed lever etc  also don't forget consultants letters good luck who filled out your pip application


#20

Basically you have to tell them how you feel on your bad days, your good days are irrelevant.

Remember their rule is its not because you have a condition it is how that condition effects you.

good luck.

 

BB