Any help with taking Pramipexole and side effects

[Zella23]

Hi all am new to this website so just trying to find help for my husband who has had Parkinson’s since he was 60 but only diagnosed 4 years ago and takes C/L 100/125 4 times a day. Also supplements including B1 D3 and some others and exercises most days He mentioned to our neurologist a very slight increase in tremor but not all the time. He gave a prescription for pramipexole without telling us it was a D/A to help with the tremor. He had previously told us he didn’t like dopamine agonists and now we have been given them. Does anyone have advice on side effects as looking at side effects makes for a worrying read! Thanks

[Hidden]

Pramipexole gave me a "hang-over"/headache feeling (as if I had woken up after after an evening of too much drinking), so I don't take it anymore.

[Zella23 in reply to Hidden]

Thanks for your reply.

[park_bear]

>"looking at side effects makes for a worrying read"

Indeed. Some seniors have lost everything due to impulse control disorder / compulsive gambling. Disability due to orthostatic hypotension is another danger. His dose of levodopa is not all that large - better IMHO to stick with that and increase if necessary. Also consider controlled release versions if he is taking immediate release.

[Zella23 in reply to park_bear]

Thanks for your opinion. My husband decreased dose a while ago by half a tablet a day as he felt he was getting some unwanted dyskinesia. Our neurologist always says my husband looks under-dosed and when he asked him to increase the dose of C/L he said he’d rather not - hence his addition of the D/A.

[park_bear in reply to Zella23]

Ah. That explains it. There are prescription meds other than D/As that can be tried, such as amantadine and MAO-B inhibitors.

Even better, try high dose thiamine and / or celery seed extract.

Celery seed extract:

healthunlocked.com/parkinso...

Qigong has helped me, my story here: healthunlocked.com/parkinso...

[Zella23 in reply to park_bear]

Thanks for the information. He is currently on high dose thiamin, but not taken it for very long. I ll look up the other recommendations. Thanks

[Annie81963]

Good morning Zella23 , I have been on pramipexole since I was diagnosed in 2010 with no side effects . I take 1.5 mg 3 times daily. I also take carbidopa/levadopa 25/100 3 times daily. Was taking it 4 times but was having leg cramps so he decreased it to 3times daily and leg pain is better.

[Zella23 in reply to Annie81963]

Many thanks for your reply. We are off to see our Doctor today to discuss with her. She isn't a neurologist but she does give us time to express our concerns.

[Stazina]

Everyone has different experiences, however my husband had a bad experience with this drug and any other Dopamine agonist. He was unable to think clearly, had suicidal thoughts and worsening depression. The other meds that had the same effect was Ropinirole (Requip). His Parkinsons is tremor dominant and these meds did not do anything for the tremors.

[Zella23]

Thanks for your reply. My husband had a discussion with the GP today and he’s delaying taking the DA until we return from a holiday. We re also seeking advice from another professional and then make an informed decision.

[Pdqyengr]

Zella23

Having had Pramipexole for about 8 years at the maximum dose (4.5), I should know something about it. The problem comes when you've had high doses for a log time. Ask your doctor if she or he knows about DAWS, dopamine agonist withdrawal syndrome.

[sharoncrayn in reply to Pdqyengr]

Someone besides myself on this forum finally mentions this issue with DAs. Hurray.

[Juliegrace in reply to sharoncrayn]

DAWS has been mentioned and discussed here for YEARS before your appearance. Information is available via the search function from people who have experienced it firsthand.

[sharoncrayn in reply to Juliegrace]

YEARS? Do a actual search (which I just did) in HealthUnlocked putting in the word DAWS for all communities. How many threads do you find where DAWS is the major issue, or at least identified as a searchable item? Tell me. I already know. One three months ago; one eight months ago.

The only thread where DAWS was truly discussed was the DA thread.

Try a different tact with me, please. Your current one is irritating.

[Juliegrace in reply to sharoncrayn]

It's "tack," not "tact."

[Zella23]

Thanks for your reply, heard it’s difficult to come off any DA s - I will look look up about DAWS.

[sharoncrayn]

Very few people on this forum understand or comprehend that carbidopa (as an adjunct to L-Dopa) is much more potent than any of the three popular DAs. So when you are taking C/L 100/125 four (4) times a day (or even more frequently or with stronger doses) you are certainly jacking up what ever is left of your dopamine neurons almost to the max. Frankly, adding Pramipexole (no info on frequency or dose provided, no age provided, etc.) to the mix is simply going to be a "mimic" (they don't CONVERT! repeat for those who think they know everything about DAs, but don't...they don't convert!), which may or may not work in your husband's case.

Try to remain positive about your doctor, or find a new one.

[LTT0019]

I was taking a total of 6 mg per day of Pramipexole.

My physician thought Pramipexole was causing my daytime sleepyness (sleep attack). I also had severe impulse control.

I started slowly titering meds down by 0.5 mg every two weeks. At 2 mg I got hit with DAWS which I new nothing about. Horrible...... I have only been able to get my dose down to 1.5 mg per day.

Good luck.

[Zella23]

Thanks for all your comments. I did put the dose of C/L 100/25 4 times a day and my husband is now 69 and is 4 years since DX. He had probably had it for 5 years before that. Symptoms are mainly slow movements, improved by exercise, weak legs and a resting tremor which various. He is now waiting for a change of Neurologist which our GP is helping us with. Not going to take DA s at the moment. Seems to be helped with Thiamine HCL also takes other supplements.

[Zella23]

We also spent an amazingly positive week learning about living with Parkinson s at Boario, Italy. Called European Parkinsons Centre. Ran by an inspirational person called Alex Reed - who has Parkinson’s. It was the single most helpful and informative support we have had in 9 years.

TerapiaParkinson.it

ParkinsonTherapy.com

The exercise programme is tailored to the individual and 1:1 with a dedicated physical therapist specialising in PD.

I wish we had one in the U K.

[humph3 in reply to Zella23]

We have one in Ipswich

[Zella23 in reply to humph3]

That’s interesting can you give me any details please!

[humph3 in reply to Zella23]

Pls see earlier post

[humph3 in reply to humph3]

Her name is Louise Kenworthy MCSP chartered physiotherapist neurological specialist . Her address 116 Bucklesham Rd Ipswich IP3 8TU. Her mantra is that Excercise is the golden bullet for NMD and Parkinson's . She charges about£55 per treatment .

[Zella23 in reply to humph3]

Thanks for that information. Sounds Perfect for PD. A bit closer than Italy but a bit too far to go on a regular basis for my husband.

[Pdqyengr]

I lived in the UK for a couple of years, pre Dx of PD, so I don't know what your alternatives are there, but if you were in the US, I 'd recommend the Neuro that you search for be a 'motion disorder' specialist, a neurologist with extra training.

On the subject of DAWS, the only time that you will experience this syndrome is when you try to withdraw the DA, so folks that poo poo this concern either haven't been on the DA long enough or their dosage was so low that it didn't cause them a problem.

[Pdqyengr]

One other tip, increasing levodopa while you are trying to decrease the dopamine agonist seems like a logical thing to do, but it does no good regarding DAWS. Researchers apparently don't know why.

[Zella23]

We have been seeing a Neurologist with experience of movement disorder - he’s just a lousy communicator and feel when we have our 10 minute appointment - not long enough - very despondent and feel not been listened too. We are changing him and hopefully find a Neurologist with some good communication skills as well experience.

[MWLE]

My father was on Pramipexole for about 6 years. He started developing some of the common side effects related to this medication. His doctor said it was Pramipexole and it took us almost a year to get him off of it. If you can avoid it, I would not recommend starting it.

Take a look on this forum about high dosage B1 and grapefruit juice. My father has made significant improvements while reducing medications using B1 and just started drinking grapefruit juice (2 oz.)

Good luck!

[Zella23]

Thanks! Yes my husband is taking B1 but grapefruit interacts with other meds he has so can’t take it. On balance glad he isn’t starting on the DA s.

[pshields]

Pramipexole is evil!

My story below. I hard previously replied to an excellent introduction by. MBAnderson on his home page, but now I believe it would have wider appal

What a Great introduction to both new and not so new PWP’s.

Your comments on Dopamine Agonists was parlicularly relevant to me. I was prescribed pramipexole early post diagnosis and quickly ramped to the highest dose available. Total years was about 8 on this terrible (for me) drug.

I had mild impulse control issues (slightly increased libido and a propensity to purchase lots of cheap Chinese junk). When I look back on this period it was certainly a deviation from my normal purchasing behaviour and amplified by the fact that my business paid for it all. Not a bad ICD but certainly one.

We decided to get me off the pramipexole late last year, one of the worse decisions of my life. The withdrawal is claimed to be worse than heroin, meth and opiates. I don’t know about that but they were bad, 6 emergency ambulance trips to the hospital, hypertensive and hypotension crises. My blood pressure would vary from extreme (260/180) for hours at a time to the opposite with long periPods of low brood pressure, a small but intense period of hallucinations and delusions, etc etc

The strength of this withdrawal is meant to be thought of as the volume of a three dimensional shape with the length of each axis loosely linked to

- strength of ICD (low for me)

- length of time on them (8 years for me - off the chart extreme)

- strength of dose (mine was mostly max. Available for me)

It was shocking

Most people can’t handle it and go back on a low dose.

It accelerated my Parkinsons terriblly after controlling it well for over 10 years.

Most doctors don’t even acknowledge it is a thing “Dopamine Agonist Withdrawal Syndrome “ - DAWS

Instead they lump it in the Dopamine Dysfunction Syndrome which it clearly isn’t

Anyway I was pleased to see you’re warning. It can be a very bad drug

Cheers

Paul

[MerckK]

I have been taking pramipexole 0.26 - two tablets in the morning and two in the evening for last one year againnst the three as prescribed by the doctor. I do walking and stretch exercise to make my brain work with less of medicine. The only problem which I feel is fatigue and nothing else. At this age sleeping problem is common to all whether PD or no PD.

[Zella23]

Thanks for your reply - what a dreadful experience you went through - sounds absolutely awful. What are you taking now? Hope you can get back to a different way to control your symptoms!

After our experience with the neurologist we have been referred to a different neurologist in a completely part of London and have an appointment pretty soon