My wife has been diagnosed with PD for the last 2 years. Currently she is on 6 tablets of Sinemet 25mg/100mg plus 2 tablets of Half Sinemet CR25mg/100mg to get her through the night. She also has 3 x 200mg Entacapone to iron out the peaks and troughs she experiences between the Sinement doses. She was also having a 2mg Rotigitine patch at night. Despite all this she would wake through the night with very bad experiences. It is hard to describe but her anxiety levels went through the roof and once she thought she was going to die. It is most upsetting for her, and it takes a lot to calm her down. The Sinemet was also giving her very bad dyskinesia throughout the day, which was wearing her out. The consultant and Parkinsons nurse have taken her off the Rotigotine and replaced it with 2 mg of Repinex XL going up to 4 mg in 2 weeks and 6mg in 6 weeks by which time she has to reduce the Sinemet down to 4 tablets of 25mg/100mg.
Currently she has been on the new regime for 5 days and quite frankly her symptoms are getting worse. She has no energy and just wants to lay down. Fortunately, she is strong willed and is trying to fight it. Our Parkinsons nurse is on holiday for a week and our GP has not got back yet. My wife does not want to stop it as it says on the leaflet consult your doctor etc. Has anyone had a similar experience, and will it improve as time goes on?
Hi Graham,
We’re sorry to hear about the difficulties your wife is facing at the moment. Along with welcoming you to the forum, we wanted to make sure you’re aware of our free and confidential helpline, as they can assist with medication questions and with finding you help when your team isn’t readily available. Please do reach out to them on 0808 800 0303 when you can.
Wishing you both the best,
Jason
Forum Moderator
Keep talking to the drs and pd nurse, and adjusting as advised. Also, note what brands are prescribed. I have found not all are as effective as others despite being “the same” drug.
Go on parkinsons.org.uk web site, type in branded and generic drugs they explain why some are different to others but they are the same!!¡!
Hi
I was always told you need to give drugs 6 weeks to settle, they do go to the brain, your brain has to adjust, sinemet is not effective if you are constipated, eaten same time as protein food, best on empty tummy, drink loads, parkinsons.org.uk is a good website you can phone them a nurse get back to you. They have loads of leaflets under library they send them free, they cover all subjects hope this helps
Welcome Graham49 to our forum it sounds as though your wife is having a realy bad time. I was dianosed in 2010 I too started on a very small of dose of Ropinirole I have had other drugs added, then taken away. The point that I am trying to tell is that we are not all the same, in fact one of the drugs you mention I was also put on it but all I did was sit in a corner and cry, I am lucky were we live as we have 4 great PD nuses and you can allways talk to one of them. Sometimes though weekends you are not able to contact your nurse so give Parkinson’s UK a ring there is all ways someone you can talk to.What does bother me from my own experience, is what you are saying, about wakeing up in the night having a bad time, please get this checked out. My hubby as not got PD but he does have a sleep disorder which doe’s have a conection with PD and some times be caused by meds. It took my husband 10 years after seeing lots of doctors is was when he went to the hospital with his eyes and in the room obsevering was a professor. The doctor ask how was he sleeping, hubby just said ask the wife, well when i spoke of what was happerning straight away the professor said R.E.M rapid eye movement, now I am not saying your wife has this but look at my post and check with your nurse doctor or P.arkinson’s UK. Your wife seems to be coping well but if her drugs are right for her se will feel a lot better. It will allso make your own life a lot live it used to be. Well allmost.
I do hope this helps you, don’t let it gind you down you allso have our/your forum.