Two years ago they put me on apomorphine after 3 months of putting up with it I told the nurse it was making me ill and all I got was we’ll put it up and this went on for 12 months, when in the end I had to demand to go back on my old medication but they did not put back to the same amount for 6 months, a week before Christmas I went to see a new specialist and they put me a watch on to monitor my down time and told me it takes a day to get back the results, I’ve got an appointment the 30th July. It great to no that the specialists and nurses care.
I get it that you are being ironical. The delays between appointments are infuriating, and as your story illustrates, years of our lives go buy waiting for changes in treatment which would greatly improve our quality of life. You have my sympathy.
Thanks Jane, I also feel that they don’t inform people about medication, they call it off time but it’s also like being a drug addict you come down from the drugs like an addict they don’t explain that all the affects are not Parkinson’s because there not, and I’ve never done drugs but no no that that it’s the drugs coming out of your system.
HI Ken2468,
You are right they don’t tell you about what you are likely to be going through when coming of of the meds.
In 2013 I had my meds changed because I had a couple of side effects. I was on PRAMEPEXOLE. I was told for the first week to two weeks to wean off, then I was to go ‘Wash out’ in other words nothing. I was given the new meds for when I was due to start again these were ROPINIROLE. I like you said felt that I was coming of drugs and like you have never done drugs I just imagine that is what it felt like.
I felt so ill I couldn’t stand, couldn’t sit for long, my whole body shook inside and out I couldn’t control it. I couldn’t sleep at least not in a bed I slept when I could in a reclining chair. TV on all day to try and distract me. I was very restless that when it came to meal times my husband cut up my food so that I could hurry up and eat it and get of the chair. When in the recliner to try and have a nap anytime I used to hold onto the arms and try and will myself to stay still just for a minute. After nearly a week I couldn’t stand it so my husband was calling the GP, couldn’t help as I see a Consultant and Nurse Specialist in Charring Cross Hospital not the GP. Tried the hospital couldn’t get hold of anyone, eventually we managed to get hold of a Registrar who said to just start taking the ROPINIROLE, which I did. It was a long haul back to ‘normal’. I walked up and down our through lounge, pulled those rubber ribbons you get from the physio and my son went with me to walk outside round the block, the small one then the large when I was able. Eventually after many months I got back to where I was before coming off… I now live in Devon and was told by a friend who worked in the NHS that it should not of happened like that and I should have been in hospital while going through that.
Don’t get me wrong I still see the same Consultant and Nurse as we get on and have had the same ones since I was diagnosed in 2007.
I wouldn’t wish what I went through on anyone.I feel sometimes I wish I had put up with the side effects as they were not too bad and apart from those the PRAMIPEXOLE worked very well.
Any I hope everyone is keeping well through the Lock Down.
Sharon x
That’s how feel at night but not to that degree, I’m on 8mg ropinirole and 100/25/200 stanek, but I’ve tried to stop the meds a couple of times, sometimes I want my old self back and this medication changes you, but I haven’t got past a couple of days because exactly as you have wrote that how it affects me so I’ve started taking them again, if I had my time again I wouldn’t have started on the meds as soon, That was 9 years ago
1 Like
Hi Ken,
How long have you had PD and did you start meds straight away?
I didn’t take meds for at least 2 years because I thought the longer I can hold off the better but in the end the Consultant and I decided to start taking them as he said it is better to take them earlier rather than later because you won’t get the time back. If you take them earlier it will start working and hold it off.
Sharon x
It’s the illness that changes you, not the meds.