Anyone else also suffered from Thrombocytopenia?


#1

I was diagnosed with PD, initially during a medical in March 2015, to be confirmed by a neurologist in April 2015. I was put on a course of Co-Benyldopa/Ledopa (rising to 200mg/50mg three times a day). In November I suffered the onset of Thrombocytopenia (blood platelet count plummeted to dangerous levels) and was taken off of the PD medication immediately. Having now, 5 months later, got my blood levels back (controlled by medication) I have been restarted on a different medication (Ropinirole) which I have now built up to the target of 1gm three times a day. This time I have suffered side effects of nausea and stomach problems and I do still suffer from shakes although I feel better in other areas. They are not sure whether the blood problem was caused by PD medication or virus, but there are cases on the Internet of this condition occurring whilst on Co-benyldopa/ledopa medication.

I am male, aged 64 living in south London

Anyone else suffered from blood related issues ?

I really liked the original medication and, although early days [ 4 weeks ] on the new medication I am not sure it is giving the same benefits


#2

Hi PDSufferer and welcome,

I have not heard of blood related issues before. Don't worry that you aren't feeling the same benefit from ropinirole as you did from levadopa. 3mg/day of ropinrole is quite a low dose and you were on a relatively high dose of levadopa so you would not expect comparable benefit. It can take a while to find the right dose and drug and you can experience nausea while changing doses. This process is best taken slowly. 

Do you have a Parkinson's Nurse Specialist? It is well worth getting to know one as they can be very helpful with meds (and everything else too!).They are usually more accessible than neurologists.

Did your neuro or nurse warn you about possible side effects of some drugs? Ropinirole is a dopamine agonist and this class of drug can cause obsessive & compulsive behaviour in some people. It is worth being aware of the risk so you can spot it if it happens to you.

I hope that helps

Elegant Fowl


#3

Thanks EF,

My neurologist went to great lengths to explain possible compulsive behaviour and even wrote to me about it.  Must confess I am taking it seriously due to the importance stressed by him.

Re: Do you have a Parkinson's Nurse Specialist?

How do I go about finding one ?

Thanks

PDSufferer


#4

Hi PD, 

Welcome to the forum. It's encouraging to hear that your neurologist has really taken the time to explain your treatment and possible side effects. 

You can talk to a Parkinson's nurse or an adviser via our helpline on 0808 800 0303 or by emailing hello@parkinsons.org.uk. They will be able to offer advice and support on all aspects of living with Parkinson's as well as discuss possible referral to a Parkinson's Nurse, you can find out more about the nurses here: https://www.parkinsons.org.uk/content/parkinsons-nurses

This page on our website may also be useful, it details what support is available locally to you https://www.parkinsons.org.uk/local-support

Hope this helps, 

Kat