What is your experience with Pramipexole?

[LearningAllICan]

My husband was diagnosed almost a year ago (at age 55) and we have tried alternative options for treating. (vitamins, High Dose B1, diet...) Our movement specialist recommends he goes on Pramipexole, mostly due to toe cramping / dystonia. He really needs to be able to run and he cant which is a problem for him. He also has a hand tremor but not other significant symptoms that are bothering him. I have done a lot of research for alternative treatments but I have not done a lot on prescription drugs - can I have some comments on people who are or who have been on Pramipexole. Thank you!!!!!

[PEB69]

Tread very carefully if you decide to use this drug. It can cause compulsive behaviours, it can be as hard as cocaine to get off if you decide it's not for you (dopamine agonist withdrawal syndrome, 'daws'), some people can never get off it even if they want to as the withdrawals are terrible. It can ruin your life, yet some people have not had problems with it. My husband was on it for 3 years and only started displaying 'problems' during the last year he was on it, luckily he was able to reduce and eventually stop taking it, and to be honest we never really noticed it made a difference to him. This time last year he thought he would be giving up work 'soon', and now a year later he feels totally different, yes PD still showing but he feels soooo much better being off this drug and now he uses mucuna, ashwagandha, B1, l theanine as his PD specific natural meds. We are wary of pharma meds, but we will choose sinemet any day over pramipexole if needed in the future.

[Pilot108 in reply to PEB69]

I also am not on any prescription meds yet but I might have to as I am starting to have leg stiffness and also some balance issues and other issues. Taking Macuna and B1 but not noticing much improvement. What type and how much macuna and B1 are you taking?

[PEB69 in reply to Pilot108]

Hi, my husband takes Barlowe's 40% mucuna & vitacost B1 - he used to take 2 capsules of Barlowe's but this last week has reduced to 1 capsule - I have also managed to convince him to take them with vit c, fish oil and a cup of green tea (helps more get to brain) He doesn't have any balance issues though. Reason for dropping from 2 mucuna to one; well one day at dinner his arm shot out by itself (dyskinesia, not tremor - too much l dopa in body not brain) so we dropped to 1 and he added the other things I mentioned above which I had mentioned many times before but he needed to decide for himself and he has.

[LearningAllICan in reply to PEB69]

No prescription drugs for your husband now? PEB69

[PEB69 in reply to LearningAllICan]

Hi, no prescription drugs at present. He was diagnosed end of 2015 and put straight on pramipexole, gradually increasing dose till maximum of 4.5 g per day reached, he has been off this drug since early Dec last year. We never expect to 'cure' him, you come to accept that but he has dramatically improved since being off pramipexole , he's not worried about the future, still works full time travelling/meetings/airports/running projects etc, just carrying on really. If things change in the future then we will find ways to change with it. If we had truly known the bad effects of this drug at the start he wouldn't have started it, but when first diagnosed you freak out a bit and think gosh I'll do whatever they say. Now we know there are people out there on no meds, people only on natural products, people on a combination of the two. We are very happy with the mucuna at the moment , and it's not some whacky hocus pocus thing, it's been widely studied, very safe, effective once right dose and 'brand' is found. Here's what he has during the day; hour before breakfast, cup of green tea with honey,vit c, fish oil, mucuna,ashwagandha, B1, l theanine (if going to airport or meeting etc, calms the mind); at breakfast a sublingual methyl b12; 2 hours after lunch, mucuna, B1, ashwagandha ; at dinner , turmeric, ; bedtime , a magnesium supplement with 5htp ,passionflower , zizyphus , tart cherry. always read up on everything, talk to others , make informed choices. Also take time, there's no rush, finding what works for you could take a number of weeks and you will tweak things here and there. Of course all of what I've said isn't medical advice, this is what we have done and what works for us.

[Hidden in reply to PEB69]

Thank you so much for this information. It’s very helpful. Have you tried Mannitol ? I’m going to add that to the B1, Mucuna, cucurmin, probiotics, Vit D and K ..... I will look into Ashawanda and some of the other supplements you mentioned. Thank you!!!!!

[PEB69 in reply to Hidden]

Hi, no we have not tried mannitol, I think it helps mostly with smell? Husband has normal sense of smell. Also I am bit cautious with it as it may upset microbiome of gut. Any supplements you may buy, go through the ingredients they list and try as much as you can to choose products with least types of 'fillers' in them, most of them are not good for you, not many products out there with just the actual herb/supplements only in them, this is one of the reasons we use Barlowes, hand filled capsules with only mucuna in it.

[Hidden in reply to PEB69]

Thank you. Just FYI, I think the people that are using mannitol are hopeful that it will stop the progression of the disease. By stopping the alpha synuclein clumping. There was a study done on fruit flies in Israel ... it was interesting. I will look into Barlow’s as I have not heard of it - I purchased the MP powder. I’m researching a lot!!! Thanks for your advice.

[munchybunch in reply to PEB69]

That’s interesting about l theanine calming you down. So if you feel you have a stressful situation coming up you take that ?

[PEB69 in reply to munchybunch]

Hi, yes he takes on an empty stomach 30 min before the 'stressful event' like checking in at airports, meetings etc, needs to be taken away from food to absorb, he takes it with the morning doses of mucuna etc and the afternoon one if he needs it. If it's a normal day at work or working at home then no need for it. It evens out the alpha brain waves, sort of feels like what used to annoy you before doesn't any more, lasts a few hours . Some people report it works really well if taken with black coffee on empty stomach, husband does this sometimes too and it does give it a boost so to speak.

[PDsux_10 in reply to PEB69]

Hi, My husband is on a similar routine as your husband. I'm curious about how much of each of the supplements your husband takes in grams etc and how often he takes ea supplements? My husband is also taking mucuna zandopa approx 3 tablespoons a day. But I have just ordered the Bartlowes and hoping it will work better for him. I have not started him on L theanine or 5htp. I think that's next on my list, it's just so much he takes already I didn't want to overwhelm him any more. If I do start him, I'm just curious how much to give him and how often? His main issues is a bad tremor in arm with stiffness. Anyway, I'm sorry to be so long winded, I'm just very curious re the grams of all the supplements your husband is taking. Thank you for any help or advice you can give

Cheers Mel

[PEB69 in reply to PDsux_10]

Hi Mel, sorry for the late reply, we are overseas visiting our kids and grandchild. Ok, details of supplements,,,hour before breakfast. 1x barlowes mucuna (650mg mucuna 40% so equals 260mg l dopa content, ) yes seems high l dopa but mucuna l dopa is not the same as pharma l dopa so dont freak out. 2x 500mg vitacost B1, 1x fish oil 1000mg, 1x ester vit c 1000mg, 1x cup of green tea, 1x ashwagandha 300mg 'ksm type',. At breakfast 1x sublingual methyl b12 1000mcg. Then two hours after lunch he takes mucuna,ashwagandha and B1, same amounts as the pre breakfast. When he gets into bed he takes a magnesium sleep blend that has magnesium amino acid chelate 150mg +marine magnesium 400mg, 5htp 80mg, zizyphus1500mg,passionflower 400mg, tart cherry 600mg. The l theanine he will use as needed, eg pre meeting or airports etc, on empty stomach, can be with the mucuna etc, or mid morning pre 'event'. He used to take 2x barlowes but have reduced to one, especially now that he willingly takes green tea and the vit c and fish oil which helps it work better. Every now and then he'll take a green tea extract capsule instead of the green tea. If he has an early start or a really long day he will do the pre breakfast lot, then a late morning 1x barlowes on empty stomach, maybe with an extra l theanine if needed, then the afternoon lot a bit later than normal. His breakfast is his most 'carby' meal of the day, he tries not to have protein early in the day, can be hard as we try to eat low carb high fat most of the time, basically Mediterranean diet, but watch carbs, add good fats, no sugar, no processed foods. And as we are away at the moment we can sure tell we have gone off the rails a bit food wise, but are enjoying family and dinners out etc. We will get back on track when home!

[PDsux_10 in reply to PEB69]

Thank you so much for your response, I didn’t realize you had responded until now. My husband is still taking pretty much the same as your husband, but he uses a scoop of zandopa with just a pinch of pure mucuna l-dopa three times a day in green tea. He does like the L-thiamine esp in a stressful situation. I have also started him on NAC 1000mg a day I think this is a great supplement overall for PD patients. He also likes his high does of B1 and mannitol. He still has his good days and bad days and it’s a constant tweaking of his supplements, but it keeps us on on our toes and it’s never a dull moment. I hope you have settled back into your routine and that all is well, and thank you again for your reply.

Happy Holidays

Mel

[LearningAllICan in reply to Pilot108]

he has not really given Macuna a fair try... He has only taken it a couple of times.... we should try that first.... along with the b1 and other vitamins

[LearningAllICan in reply to PEB69]

thank you for your comments....

[parkie13]

Your husband can try a small dosage of Carbidopa levodopa CR , that is a continuous release drug. Small dosage would be 25/100 three times a day.

[park_bear in reply to parkie13]

A much safer alternative.

[LearningAllICan in reply to parkie13]

thank you. from my reading it sounds like we should definitely try something else first. I think he recommended it because of the dystonia in the foot..?? maybe we need to talk with doctor again.

[Hidden in reply to parkie13]

Okay. Thank you. We will stick with vitamins and supplements for now and if / when we decide on pharma - will try the low Sinemet dosage. Thanks so much

[Hidden]

Stay away from Pramipexole (Mirapex in Canada). Dreadful side effects for most people. SERIOUSLY!!

[dwalker9711]

I have been on Pramipexole for a year now and it has been great for me. It took me a few weeks to get used to it but it has reduced my off times overall helped my C/L work way more effectively I noticed a big difference several weeks after starting to take it. I am 45 and was diagnosed 3 years ago, I was on C/L for 2 years before adding the Pramipexole. I haven’t experienced any adverse side effects from it at all.

[sleezy]

I took Pramipexole for 10 days. I stopped when I had a problem with low blood pressure. I would not have taken it to begin with if I had known the side effects associated with this medicine. My advice is to not take it.

[LearningAllICan]

Thanks everyone - we will not be taking Pramipexole - at least not until we give some more natural therapies a solid try.