Dopamine agonists

[seamus60680]

Hi all, does anyone have any success stories on using DA's? I'm sure my Neuro is going to try and steer me this way soon but I'm wary having heard of so many bad experiences. Thanks.

[Juliegrace]

I tried both (generics of both) Requip and Mirapex and if either helped it was briefly. I had terribly swollen ankles and compulsive behaviors, luckily nothing harmful. My neurologist was not a huge fan of them, but told me that, "doctors were made to feel bad if they didn't prescribe them." I'm not sure by who, maybe the drug companies. I stopped taking it right after I started carbidopa/levodopa. I think docs leave people on them long after they cease to be effective, but that's just my opinion.

[Hal1 in reply to Juliegrace]

Name brand Mirapex works well for me. Generic did not work nearly as well. Name brand is very expensive!!

[grandmama16]

My hubby takes one Sinimet or two, daily, along with 1 Azlect....both generic, since he was dx. Others in our group take a lot more and it has caused deskineseas....ok, I spelled it wrong. Today he was having more tremor so he took an extra Sinimet and he's totally wiped out. He started out with Univ. of Ut. nuerology center which is very good but because of travel he switched to a Nuerologist here. Thank goodness he doesn't push taking more meds. My hubby did ask for something to help stay asleep and he pres. Klonopin but he gave up on it because it made him fuzzy during the day. I was hoping he'd get Ambien which is what I take and am given, due to Ins., only 1/2 a day due to age, 73. That doesn't work. I told my Dr and she said basically Phooey on them and gave me new pres. for a whole one. For hubby I've suggested OTC allergy pills...benedryl... but he hasn't tried it yet. I use it for the intense itching I'll get at times.

Except for the PD support group, I'm surprised at how many we know who have PD. The first time I heard of it was many years ago seeing a new couple walking out of church and she had a strap to help him walk...he was a big guy and she was tiny. I told my kids....now that is love. She laughed and said Don,t use us as a. example...but she was. As years went on I became friends with her.....we both had a handful of kids, five. She had lost a son, then later a daughter to cancer and I lost a daughter in 2006. I watched her devotion to her husband as he went downhill...he had also battled cancer and was bi polar. She tried taking care of him in their home but a nursing home became necessary and she was there everyday until he died. I doubt that in the beginnings of his PD that he had the meds we do now. She has recently died having dementia living most of the time with a daughter here. Since my husbands dx we've seen many more with PD. Are we just more observant or is it more prevalent?

Sorry I've rambled on. M.A.

[park_bear in reply to grandmama16]

Valerian root has been helpful for my sleep and it is a non-prescription herb (warning - it has a bad smell) .

Also, the original poster is asking about dopamine agonists and you should know Sinemet is NOT a dopamine agonist.

[grandmama16 in reply to park_bear]

Yes I know it's not an agonist but the other one he takes is.can't remember but I'm glad neither has been increased. He has tried Valerian or a combo containing it. There was something he didn't like. I've heard that it can interfer with some meds. Thanks for answering. M.A.

[Hal1 in reply to grandmama16]

When I have an increase in tremors, I take an extra half of the 25/100 Carbidopa Levodopa. It works great and I am not so groggy. Also if the C/L makes him groggy try to time his last does of the day closer to bed time. Maybe that can help him sleep easier and he won't have to take the Ambien or the Benedryl. Hope this helps.

[grandmama16 in reply to Hal1]

I think he should've done that yesterday instead of a whole extra carb/leva. Made him really sleepy.

[johntPM]

Yes, I think I'm a success story for agonists ( 12 years post diagnosis, 9 years on ropinirole CR/ Requip XL 8mg per day). I'm still mobile and no dyskinesia. I'd also stress the role played by exercise (walk 5 miles/day).

The advantage of most agonists is that they last longer (they might have a half-life of 8 hours, say, as compared to 90 minutes for levodopa/carbidopa). The disadvantage of all agonists is that they don't turn into the thing missing in PD - dopamine. This increases the chance of compulsive behaviour.

In addition to the ropinirole I take 1mg rasagiline and 5x75mg of Stalevo.

I see the ropinirole and the rasagiline as providing reasonably stable foundations, but Stalevo (levodopa/carbidopa/entacapone) as doing most of the work. This has the advantage that, although I do have "offs", they are fairly mild (e.g. slow typing, but can still walk).

It is very important to titrate slowly to the optimum dose.

John

[park_bear in reply to johntPM]

I get at least 8 hours out of the CR/ER versions of carbidopa/levodopa. The immediate release versions indeed are very short lived.

[ramondo4]

My neurologist just started me on a neutro patch of Rotigotine, 2 mg moving me up to 4 mg after four weeks, I already take 3 Sinemet 25/100 daily, making me feel a bit sick.

[JohnPepper]

Why waste your time and money on drugs that do absolutely nothing to slow down the progression of Pd, with the possible exception of MAOb inhibitors?

Why not start do exercise that can and does slow down the progression of Pd? It costs nothing and has benefits for many other ailments that most of us suffer from?

Look at my profile

[johntPM]

John,

Of course exercise has a role to play, but so do drug therapies. They may not slow down progression, but for many PwP they will improve their quality of life by reducing some of the symptoms.

John

[pmmargo in reply to johntPM]

Yes I agree. I can walk a lot better now on Mirapex. That way I can be at 80% of my maximum speed which is required for the brain to give out Neurotropic growth factor. It was hard to get up to speed before.

[jeeves19]

Working well for me Seamus! Just ask a sober friend or family member to keep An eye on possible compulsive behaviours😎

[seamus60680 in reply to jeeves19]

Hi Jeeves,good to hear -finding a sober friend could be tricky tho!

[stevie3]

Me too. I'm on 8mg requip plus 1mg aziclet. I got my husband and best friend to monitor me. I think the other advice is tirate up slowly.