Diagnosed 6m ago but uncertain about meds

Hi, early in 2020 aged 74, living in Devon I was diagnosed as having MND. 3 months later after a second nerve conduction test it was decided I did not have MND but Parkinson - probably. Eventually had an abnormal DAT scan result which seemed to indicate PD.

My symptoms were initially very slight loss of balance, then double vision when reading, then difficulty in controlling speed of speech - my voice would speed up uncontrollably and I’d slur words. Alongside all of this was a persistent feeling ‘out of it’ hard to describe but weird and a sense of stiffness and tension in my neck and shoulders.

Late last year fed up with the speech problem and feeling weird and out of it I decided to start Ropinerole XL 6mg per day and an anti-depressant because of persistent low mood. The latter has been a life long condition and not I consider anything to do with PD. My consultant and suggested Levadopa but I did not want to start that straight away so decided on Ropinerole.

None of the symptoms that really troubled me have been helped (so far as I can tell) by the meds. When I tried to discuss this recently with a new consultant at Queen Sq London he was dismissive and said my out of feeling must be because of my depression and I should up the dose. I was taking 15mg Mirtazapine daily.

I have now decided to gently come off all meds to see what happens. So far after 2 weeks I’m down to one mirtazapine every 3rd day. I had gone up to 9mg of Ropinerole XL daily and am now alternating between one day 6mg and one day 3mg. I won’t try reducing the Ropinerole more drastically until I have stopped the mirtazipine completely and get a sense of what that feels like.

So far nothing feels very different in terms of symptoms but I feel better for taking back control!

I’m generally fairly fit, walk about 5km daily. My walk doesn’t feel right to me a lot of the time - no bounce and a bit wobbly sometimes. Now I write this I guess that is another symptom that I find really distressing. I do a work out every day for about 15mins.

I’m very glad to find this forum and some good peer to peer support. If anyone has comments or suggestions to make I’d be glad to read them.


1 Like

Hi @nickcc, :wave:

Welcome to the Parkinson’s UK forum. :slightly_smiling_face:

I’m glad that you’ve found us too, we’re definitely happy to have you and I’m sure members from this wonderful community will greet you soon.

Many people with Parkinson’s have had issues with Ropinerole and other Parkinson’s related medication including experiencing side effects so you’re not alone with being uncertain about your medication. However, I would strongly advise you to consult with your GP or Parkinson’s nurse before making any changes to your medication, especially if you’re deciding to come off your medication altogether.

We have a lot of information about Parkinson’s drug on our website that I’m sure you’ll find helpful and you can find this here: https://www.parkinsons.org.uk/information-and-support/dopamine-agonists-pramipexole-ropinirole

We also have a great team of advisers via our helpline team that have a wealth of knowledge and experience with supporting people with Parkinson’s with drug related issues. Please do give us a call when you can on 0808 8000 0303 which is a free number.

Best wishes,
Forum Admin