I'd really appreciate people's experience of their medication. I was recently diagnosed and after being given a choice of whether to take anything I decided I wd. because the hand tremor drives me potty and makes me self conscious. I was put on Mirapexin starting with .26mgs to increase over three weeks to 78. However after the dose doubled I suffered with dramatic side effects, and I sd. this drug isn't for me-too scary! Now my neuro has prescribed Requip XL but having looked at the side effects on the web and also reading various postings this seems scary too. I haven't yet started.
Why do drs. prescribe DAs rather than Levodopa and why different versions of the same drug? Is it all as random as it seems and does anyone have a positive experience?
I find it all quite depressing, and I'd like not to
I was diagnosed in march this year and was put on Mirapexin. I was fine on the .26 dose but when I went up to .52 I felt like death, sick, dizzy and generally awful. It has taken me over 6 months to get to the point where I can take them without feeling awful.( I still have to take Domperidone for the nausea).
On the plus side my pain disappeared overnight (back now unfortunately, dose needs increasing).
They are changing me to Ropinerole too ((If they ever get round to writing to my GP) so I will be interested to hear how you get on with it.
That's exactly how I felt-like death-but guess what, the tremor stopped but it felt like so was my life which is why I found it scary. I was offered anti nausea stuff but at what point does it all stop, drugs to beat drugs to beat drugs!
I'm impressed you've stuck it out though. I'll keep in touch and say how I go and let me how you get on?
I have beenm diagnosed nearly nine years and take a cocktail of medications that have been a) rtecommended to me and b)assessed by me doing research on the Internet.
I was started on Ropinirole after about 3 years - which was going to "cure" my Parkinson's Face - it didn't and made me quite ill each time I took it but I persevered
I started doing my own research and communicated with fellow sufferers and that is where I came across Amantadine which is recognised as being of help with Dyskenesia. I thought why not try it (it worked for some of the people I talked with) and although it did not stop the Tremor, it gave me a boost and I "believe" will help hold off Dyskenesia - no Neurologist has confirmed that but my beliefs are as releant to me as expert opinion - we have to assess for ourselves
I have made contact with a number of Nerologists and discovered there are two schools of thought vis-a-vis medication. One says "take medication earlier to maximise the benefits" and the other says "only take what mewdication you absolutely must have to function. I am firmly in the camp of the first school
I moved on to Sinemet and Azilect (Rasagiline) - about 3 and 2 years ago respectively and once I started taking the Azilect it was the difference between night and day - many people have said I look and move better than I did 2 years ago!!
The Neurologist (I met at a conference and emailed him and also saw him in his clinic) who recommended the Azilect also recommended, I switch from taking the Ropinirole to taking the slow release version REquip XL
I always take the Requip XL after breakfast (I learned not to take Ropinrole on an empty tummy) but I take the other three without food - the first cocktail of Azilect, Amantadine and Sinemet) i take around about 11.00 with secomd cocktail of Amanadine and Sinemet at 15.00 and the third cocktail Sinemet only at 19.00. If we are going out or have friends round, I takle a 4th cocktail of Sinemet only but I manage fine during the night without any specific Pd drugs (and still get up first in thr morning to let the dog out and take tea up to my lady0 and, as I said can go until 11.00 the next morning (Requip XL aside)
I have found that Neuroilogists all have their favourite drugs so I would counsel you to read up for your self (and don't be despondent about side effects - even aspirin sounds horrendous if you only read the possible side effecta). You have to be prepared to "take charge" and accept it is all very much trial and error I'm afraid because we're all so different
Apart from the sickness if taking Ropinirole on an empty tummy in the initial stages, I have been lucky to suffer no other side effects.
I realise i hve rambled on somewhat (!) but would like to finish by saying that getting a good night's sleep (I take Zopiclone - and read tonight that there is a research program on using a similar drug just being funded by Parkinson's UK)is so so very important AND perhaps the most important of all is exercise. I cycle on a Saturday, go to the gym for a very tough workout mostly weights) on a Sunday Tuesday and Thursday and attend a Posture and Stretching claas on a Monday. I usually walk thr dog as well but I have injured my Achilles Tendon by overdoing things in the gym (shows how smart I am!!) so am not going for long walks whilst that heals up
If nothing else I'll have helped you to sleep
Hi are any of you getting sleep problems , for example nightmares /hallucinations .
My husband is taking Sinemet Plus x 4 daily , along with Sinemet CR and 25mg Amitriptyline aT bedtime . He also has Rotigotine patch 6mg .
Thats along with warfarin, beta blocker for Atrial Fibrillation and amlodopine for his BP .
He is 77 and because of the hallucinations his consultant is reluctant to try any other medication
As I have said before: PD cannot be cured. The drugs are there to make life comfortable by lessening the symptoms of PD. So in the end it all comes down to the individual [patient's needs and every PD patient is different.
Young patients under 65 are started on Dopamine Agonists, usually either Mirapexin or Requip. Some tolerate the one better than the other, both have nausea as their most commom side effect. However, over time the nausea usually subsides. So taking anti nausea medication (Domperidone) in the early stages is sensible if you suffer from nausea. Slowly titrating up of dose also helps to lessen the side effects of these drugs and by slowly, I mean increasing dose once a week if necessary. It took me over 5 months to reach the most effective(= required for good quality of life) dose of Mirapexin. Never suffered the nausea.
Neurologists either like Requip or Mirapexin, there is only limited choice (Rotigotine patch or starting with Azilect or Selegiline)
Older patients are usually started on Levodopa drugs such as Sinemet or Madopar. One reason for this is that older patients are more prone to suffer from hallucinations on the DAs. The levodopa drugs are most effective and give fewer side effects and are considered to be the gold standard in the treatment of PD. Everyone will end up taking these. Some neurlogists like to start with levodopa drugs no matter the age of patient, but most think that starting the patient on DAs will delay the onset of the dreaded(and very unpleasant)dyskinesias that invariably follow after a few years on levodopa meds. PD is very sensitive to the placebo effect.This can help the patient.If they firmly believe in the effectiveness of the drug they will do better than one, who is a sceptic and has a negative attittude.
The DAs have a very negative profile on this forum, but newbies must realise that these drugs are very widely prescribed and the majority of patients are doing well on them, but of course they are far less likely to post on a forum than the ones that suffered (and for some very )serious side effects.
we all have different reactions to drugs.
i hate and detest amantadine but others like it.
i think ropinirole (requip) is great (as long as dont take to much) and never had stomach problems. i am going to have to privately import it into australia as it isnt subsidised.
madopar is good for me and when combined with ropinirole they work pretty well.
others hate the stuff.
so there is no formula for a neuro to apply to everyone. so they dole out their favourites and wait and see what happens. fair enough.
i do have a problem in that i have been given segeline but dont want to take it in case it sets off atrial fibrulation which is very very unpleasant. am going to double check with my neuro and pharmacist. trouble is, i think after a few years we patients sometimes know more about the drugs than the profesionals, especially if they are not pd experts.i dont mean the neurology but things like interactions, precautions etc.
ps spelling of drug names is ALWAYS a problem
Like every other doctor.
They have list of drugs ordered cheapest to dearest topped by the list of long-legged, boob jobbed / tight bottomed pec jobbed reps that they think fancy them, drugs that have been pushed.
Wait for complaints about drugs not working and work their way down the list.
You can usually tell what your getting from sponsored items on their desk, such as note pads, pens, calendars, etc.