deborah-mcdonald
Forum Replies Created
-
Exenatide sounds quite promising. In trials it seems to slow down and possibly reverse PD. This is being researched by Cure Parkinson’s Trust which uses drugs already tested for use. This drug is used for type 2 diabetes. They are up to level 3 trials
-
Hi Beth, I can’t understand why you have been given dopamine as my understanding is that it can’t cross the brain barrier so is no use. Perhaps you should check with another neurologist. If you are in the UK or Europe you can get Madopar which is like sinemet but has doses of only 50mg of levodopa which can cross into the brain plus a substance to help prevent sickness. In US I guess you’ll have to stick with the higher doses plus an anti sickness drug. Good luck and I hope you find something to suit you soon
-
Hi, what dose of levodopa were you on. Was it straight levodopa as on its own it will make you sick. If you were on low dose sinemet that should be better but if not the Neurologist should be able to give sinemet or if in Europe we also have Madopar. Both have a buffer against sickness. Some people still feel sick but they can be prescribed with an anti sickness drug which should do it. Either way try your neurologist first.
-
I have just registered with Clinicrowd and navigated their webpage. I have had Parkinson’s for three years and am on Madopar 500 mg a day (similar to sinemet) which is working quite well. In fact very well for slowness and rigidity. So I have my mannitol which arrived for days ago. I’m sure I must be imagining it but I have had more energy since starting it. We’ll have to see. I have heard they have had a large number of patient drop out. I wonder why? My personal feelings at the moment are that the website is so difficult to navigate that many drop out. I see others have mentioned this problem here. Can a message be sent them to try to improve it? I’m not really sure what I’m meant to do next. How often do you report back? Do they contact me? All this is unclear. Looking forward to joining this discussion. This is my first ever forum posting.
-
I have been on the Neupro Rotigotine patches for about a year. I started in 2 mg and have worked up to 5mg. I have been on Sinemet since my diagnosis 4 years ago and they do a good job. But – I was getting terrible anxiety each time my pills were getting low. I had nil energy and felt desperate for something to help the panic attacks and breathlessness. My Consultant put me on Neupro patches 2mg and I was told to gradually work up to a higher dose. Initially I didn’t notice much difference but when I had been on 4 mg for a few weeks I suddenly realised that I had not had any terrible anxiety issues for a while, which was brilliant. I have stayed at 5mg for some time. I have also got much much more energy and enthusiasm – I’m upcycling some old drawers, painting the front wall and planting out the garden. From being unable to contemplate exercise (had to stop PDWarriors as I kept panicking), now I’m doing things all day long and loving it. I’m a fit 70 year old and feeling great again now. Can’t say I’m as good as pre PD but am much improved. No seizures or any bad side effects. I do get a bit hyper but it just makes me busy doing things. No gambling or shopping. Just gardening and painting. I’m in UK so don’t have to pay but I do know they are expensive. I don’t know what I’d do without them. I’m still on Sinemet, Madopar to be exact. This is very similar to Sinemet in that it is levodopa plus a buffer and works the same. We can get both here but in the US you can only get Sinemet. We’ll I’d recommend the patch but do look out for any gambling, excessive spending or other odd behaviours. Incidentally my appetite has improved but I wish I could put a bit more weight on.
Hope this is helpful.