Totally bamboozled with PD drug treatment!

I am 58 and was diagnosed 5 years ago. Suffering now with a tremor down my right side, more dominant when stressed or tired, but still enjoying a very active life with yoga and pilates forming part of my weekly fitness regime. Up until 2 months ago was totally drug free. I then started taking selegiline 10mg which made very little difference, so now weaning myself slowly off this. Maybe I didn’t give it enough time ? Last week my neurologist suggested starting on Levadopa and initially I was up for this. Having now read various articles there appears to be worries about long term effects after 3-5 years, which would be in my mid 60s. Not ideal! I then suggested that maybe I start with Mirapexin, so awaiting a prescription for this. I would love to hear from anyone who has experienced a similar situation and would appreciate any advice. My gut feel is to continue on the path of being drug free as long as possible.

Hi @Nici, I can’t really offer any advice, I’m afraid, because I’m in a similar position. I am 61 and was diagnosed 3 years ago and was immediately prescribed rasagiline, which I think is a MAO-B inhibitor like selegiline. I do think it has made thing more predictable - my tremors are less variable - and my sense of smell and anxiety levels have also improved.

The tremors are now getting more problematic now along with some discomfort with walking and difficulty in left hand dexterity so I’m considering asking my neurologist whether it would be worth adding something else but am also worried about side-effects and possibly long term problems so would love to hear other people’s experiences.

Clare

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Nici that is very worrying. I was prescribed sinemet right from the start, 14 months ago, when I moved it changed to Levadopa as apparently sinemet is too expensive in Maldon.
I know there can be side effects but i didnt know it was only 2 to 3 years before they started. I didnt realise there was a choice of medication.
The only thing I have read was that any medication for Parkinsons stops being effective as time goes by and you have to take more and more medication.
Would love to hear other peoples take on this.
Thanks.

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My husband was recently diagnosed at the age of 42. Maybe its his age, but the Neurologist said the most important thing was to get straight on the medication…and ensuring its the right medication because he has often seen cases where Doctors haven’t prescribed the correct medication and it has set patients back years.
I was under the same impression as the lady above in that the medication becomes less effective as symptoms step up so more meds have to be taken (and am assuming thats when DBS is suggested?)

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In the latest PUK research magazine, “Progress” there is an item in the News Roundup section which says that a recent clinical trial has produced further evidence that there is no benefit in delaying levodopa therapy. It wasn’t a very long trial though - only 80 weeks.

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It’s all so very confusing with many conflicting messages. I’m going to start with a beta blocker for my tremor to see if that makes a difference. Very interesting to hear that you were prescribed rasagiline. My doctor can’t prescribe this in my area, so I started on selegiline although I’d have preferred rasagiline. I noticed very little improvement. Staying positive and active are what keep me going!

My husband was diagnosed 13 years ago age 49, no medication for a year then on dopamine agonist- no side effects - over the years Azilect was added (Moab inhibitor ) then Stelevo. He’s now on Safinamide instead of Azilect . He runs x3 a week , golf x4 gym x5.
Days are really good you would hardly know he has Parkinson’s, but he does ‘stop’ around 8-9pm but we have adjusted our day to cope. I’ve read articles that are for and against taking drugs from initial diagnosis.
The more important ‘drugs’ are exercise and good diet . Read info from the most recent Parkinson’s conference in Japan, but … John would not be able to exercise if he didn’t take the medication, if he didn’t exercise he would not be as well as he is 13 years since diagnosis. If you don’t start the medication while you are reasonably fit and well I think it will take a lot more medication to get you to the stage where you can function well. Johns level of medication has not been increased for over 2 years . Hope this helps .

Hi, my wife is 38 and has been DX last year. She has a tremor in her left hand, not swinging left arm, and slow movement of that arm. We are under the care of the National Neurology Hospital at Queen’s Square in London, which is apparently a center of excellence for the UK. We have been told by the Neuro teams leading Prof. not to talk any medication as long as possible, if she can manage without. This might be age related, and I’m just sharing what they told us.

When we get to the point of taking Ldopa I will try to get her on alternative treatments first with Mucuna Prunes+carbidopa. It’s harder to switch from Synthetic meds to MP, then the other way around.

Hi all,

Glad to see all the helpful advice shared on this thread.

I just wanted to remind you all that we have a lot of information on the different drug treatments to help manage Parkinson’s symptoms which addresses most of the points raised on this thread. You can find this information here - https://www.parkinsons.org.uk/information-and-support/drug-treatments.

Of course, if you have any queries about your medication, you can always give our helpline a call on 0808 800 0303.

Best wishes,
Reah

Hi my name is Sam and I am 51 and have had Parkinson’s for 11 years now I am really lucky to have an excellent Parkinson’s nurse who is also a trained pharmacist so Ian on really good medication that hasn’t increased for 2 years.her motto is not to increase drugs for the sake of it but to try to let your body fight it as well I’d exercise I still have bad days but generally this works for me hope I helped x

My wife use Mirapexin, slowly builded up to a one daily doses of 1.05mg.
It works fine, no side effects.
Some docters say, as long as you can wait with medicine the better, other say , start with it, you feel better of tremor.
Why you dont have at the start they found out you have PD Xadago? this is not a Ldopa, but it will keep the dopamines protected witch you have.
Some use medical canabis oil, but after a year it will not work , unless you rais the doses
Good Luck.

Hi Nici. Your symptoms are similar to mine (right-sided predominant akinetic rigid Parkinson syndrome). And your approach/caution match’s my own attitude. I was prescribed Madopar which I was persuaded to try reluctantly. It made me feel queasy, and the drug they wanted me to take for this was clearly taking me down the “cocktail party” route to oblivion
. So I did a lot of research and decided on taking Mucuna Pruriens (a naturally occurring Asian bean full of ldopa) which has been used for centuries in India to reduce the effects of tremor without long term medically-induced alternative illnesses (“side effects”). I take it in powder form in water before breakfast and again 12 hours later. You can get in pill form too.
I recommend you read ‘Mucuna versus Parkinson’ by Dr Rafael Maldonado for an analysis. His English isn’t brilliant but the message is clear.
If, like me, your digestive system leaves a lot to be desired (constipation, diarrhoea etc) then you might also like to boost your immune system with the Autoimmune Paleo diet. I have been on it for 6 months now and it has turned my life around.
My research suggests there won’t be cure around for a long time yet. All the current treatments address the symptoms and not the cause. The latest research indicates that a poorly performing gut is a part of the cause - not just a symptom.
Hope this helps!
Cheers JCPB

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High Nici Your not the only one to be bamboozeled, From what I can see every one else is too,They put me on Madopar plus Beserazide for a trial period of 2 to 3 months, I can sleep for England, , but I have had most of the side effects at diferent times listed on the paper slip ,So I looked on the net that was a mistake and I found there are at least 4 diferent times you are suposed to take the tablets, Befor a meal,dureing a meal, immediatly after a meal and one hour after depending upon the source, It dosnt fill you with confidence,One thing the doctors seem to agreed upon, KEEP FIT , EAT WELL and avoid the tablets, Shakespear had it right" Eye of newt, toe of frog, you would definatly would not want to try his tablets. Wishing you well,Fat fingerd Pete

After reading all the posts, I have one thought …… What a shame we cannot rely on what the Doctors say……… It all depends on you getting a good neurologist. I thought had ………….

Hi Eve Do not loose confidence in your doctor or the consultant,Parkinsons is such a complex subject,I am gratefull to any profesional who would take the job on, Personaly after about 3 months, I stoped the madopar ,as the side effects were worse than the shaking hand and now a month later most of the side effects are gone.Wishing you well Fat fingered Pete

Thanks for that. I have a bit of a problem to say the least …. I have a drooping eye lid - well on the printed paper that comes in with your meds it says watch out for side affects one being drooping eye lid - brought it up with the doctor and he said nothing to do with PD !! this only came on recently. I have about 6 of the listed side effects but have been told nothing to do with PD. So as you can imagine I am at a loss what to do. Also, no further appointment has been made by the Neurologist for 12 months time - this happened to me before and didn’t see anyone for over 3 years ………… so ………… what do I do

Hi @Eve1,

Having a drooping eyelid is quite common for people with Parkinson’s and there has been discussion on this on the forum before here - Unable to keep eyes open. We also have an eye section on our website that’ll to be helpful to you which you can find here - https://www.parkinsons.org.uk/information-and-support/eye-problems.

It’s a real shame that you’ve head to wait that length of time to see a neurologist and given that you’ve already spoken to your GP about your side effects, I’d recommend that you speak to one of our advisers about this. They’ll be able to offer you more information and support on this so do give us a call on 0808 800 0303.

Best wishes,
Reah

Thank you. I have made an appointment with my GP at the end of the month. I have printed off all you have said and what is on your web pages.

I am a little disappointed at both my Neurologist and Parkinson Nurse - I emailed her nearly 4 weeks ago and have no response. I will wait now until I have spoken to my GP and then, if I haven’t heard anything, will try to contact her via the phone.

Thank you again for your help - you are a lifeline to many of us with PD.

Hi Nici

Interesting response from the Neurological Hospital in Queens Square which I would endorse. I work with a wide range of sufferers in my local branch and have seen some evidence of side effects and over-prescription of drugs. Proceed with caution. In my experience if you can manage without then leave it to your gut instinct to tell you when you need help.

Hi @Eve1,

You’re more than welcome and all the best with your up and coming appointment.

Best wishes,
Reah