What do I do now?: I got diagnosed at the... - Cure Parkinson's

Cure Parkinson's

20,156 members21,294 posts

What do I do now?

Highlander63 profile image

I got diagnosed at the end of October 2021. Once diagnosed I was offered a choice of sinemet or pramipexole. At the time I was stunned and confused at what to do. I hadn’t processed anything yet. I chose pramipexole cause I got the impression it was lesser of the two evils so to speak. Now that I have joined this site I feel better informed. I am wondering if it would be better for my hand tremor to be on Cardopa/levodopa and maybe Rasaligine. Pramipexole helps a little at .5 mg 3x daily. Any insight or advise is appreciated greatly.

39 Replies

I’m tremor dominate too. I take Rasagaline and Rytary. The later is extended release c/l.

For several years after diagnosis I took nothing but Rasagaline . Then both c/l and Rasagaline. I switched to a slower release, Rytary because c/l made me nauseous.

I’m going to my Neurologist in a couple days.

I can let you know of her future recommendations. Good luck. Meds work but I’m an advocate of exercise as my primary medication. I do yoga and spin. I also work a laborious job.

Thank you so much for your response. I am very interested in your Neurologist’s recommendations. I am leaning towards your combination of meds.

After seeing Neurologist we’ve increased my dosage of Rytary from twice a day to four times. Each pill lasts 4 hrs but my days are often 16 hrs.

Pramipexole is a dopamine agonist. Patients need to be fully informed of the risks of dopamine agonists:

After five years of usage over 50 percent of dopamine agonist users end up with impulse control disorder -compulsive gambling, sex, eating or shopping: n.neurology.org/content/91/...

"In 306 patients without ICDs [impulse control disorders] at baseline... 5-year cumulative incidence of ICDs...DA[dopamine agonist] ever users 51.5% ... DA never users 12.4% ... ICDs were associated with ever DA use (prevalence ratio 4.23, 95% CI 1.78–10.09). Lifetime average daily dose and duration of treatment were independently associated with ICDs with significant dose-effect relationships. Similar analyses for levodopa were not in favor of a strong association. ICDs progressively resolved after DA discontinuation."

Some seniors have gambled away their entire retirement as a result of impulse control disorder: medrants.com/archives/2439

There are other risks as well.

I have been accused of "hating" dopamine agonists. That is not so. I am in favor of people being fully informed. In my opinion dopamine agonists are best reserved for use after levodopa no longer does the job.

If a person decides to stop using a dopamine agonist the dosage must be tapered rather than quitting cold turkey.

Ripraniya profile image
Ripraniya in reply to park_bear

I also strongly feel that instead of going for any medication right now, please do some brisk walking both morning and evening. Because once you start the medicines you may find it difficult to stop them

Thank you for your response. I am so tired after a 10 hour day at work. I come home have dinner and nod off in the chair. I think the pramipexole is taking the air out of me. I agree with you and want to start using my treadmill and bike .

I take rytary 195 and a 145 3x a day. I was diagnosed almost 2 years ago. Its all a learning process. I come home from work and some days I am exhausted. I ride my bike and walk and am also looking into yoga and some alt therapies to help. I also find meditation helps. My hand tremors come and go. When I am relaxed or meditating they stop. Get out and exercise!!! Don't stop walking or riding. Even when your tired just embrace the suck and make it happen.... gotta keep moving!!

DAs have advantages over levodopa, particularly in relation to the treatment of some non motor symptoms. This may be why you were prescribed them though it's not clear to me if tremor is your only symptom. If anyone without such NM symptoms tries to equate DAs with levodopa in terms of therapeutic benefit, you can safely ignore them.

In relation to what I consider fear-mongering around possible side effects (which I personally consider manageable):

tandfonline.com/doi/abs/10....

"Dopamine Agonist Phobia’ is a PD-specific pharmacophobia characterized by the fear of complications related to the use of dopamine agonists (DAs).

‘DA Phobia’ leads clinicians to underprescribe DAs which can instead be beneficial for specific non-motor symptoms (NMS), especially in the context of ‘personalized medicine’.

Pramipexole could be effectively used for the treatment of depressive symptoms in PD, as a mono- or an add-on therapy to levodopa and a potential effective role in improving REM sleep behavior disorder (RBD) has been demonstrated.

Ropinirole is likely to be effective in the treatment of depression and possibly apathy in PD.

Piribedil might be useful for the management of apathy in PD, without exacerbating excessive daytime sleepiness (EDS).

Rotigotine has been shown to improve sleep dysfunction, included restless leg syndrome (RLS), periodic limb movement (PLM) and nocturnal pain and possibly RBD and early morning OFF (EMO) state.

Apomorphine could improve PD nocturnal motor symptoms affecting sleep (RLS, PLM), EMO, nocturia as well as anhedonia and mood.

When prescribing a DA, the NMS profile of the PD patient should be drawn, and the advantages of each specific formulations should be taken in consideration.

Clinicians should aim for the lowest effective dose with a careful monitoring of side effects"

As an aside, in my view when someone really wants to ensure that you are "fully informed", they'll note the costs and the benefits, the risks and the rewards.

Despe profile image
Despe in reply to kevowpd

You sound like a real MD!

To the best of my knowledge there is no Pd medication on the market that either slows the progression or stops it.

YThe only way I know to do both slow an even reverse the symptoms of Pd is Fast Walking. Don't tell youreself you can't walk fast until you have been shown how to use your conscious btrain to control yoiur nmovements.

Look at my profile and contact me. I will send you allthe information on how to do this together with videos of other people doing it, at no cost at all!

I am 58 years of age. My PD is tremor dominated with neck and back pain. I consulted best of the neurologists and tried their prescriptions. After 3 years , my tremors and pain, though have reduced but not cured.At the beginning ,doctors started with rasagelline 0.5 mg for six months. Later increased to 1 mg for next 6 months. Added pramirol SR 1 mg, 2 mg and finally 3 mg a day with 1 mg of carbedopa/levadopa.

Some doctors recommended THP 2 mg to reduce stiffness. This caused severe uneasiness.

Now , after three years, I emphasized my doctor for reduction in my tremors.

He got my ECG done and prescribed the following:

1. Carbedopa levadopa - 2 mg a day

2. Pramipexole SR 3.5 mg a day

3. Inderal 40 ( propranolol) 40mg once a day

Supported with oil massage, walking for 5 kms/day and Tai chi or yoga to stretch my body for 30 min.

Diet with lots of water, fruits and fibrous food.

I feel much better now.

This is my experience but it depends on person to person and hence please consult your doctor only.

Hello.

I was newly diagnosed last year and also had the same dilemma as you. You’ll see from your responses that you have people for and against both types of medications which doesn’t help us newly diagnosed. I don’t contribute much to this site but I take time to read it daily, as you do find some very useful information.

The advice I find most helpful are first hand accounts , both good and bad, of users personal experience of medication.

So, I was torn between the two, I started on rasagiline which did nothing at all for my symptoms.

Now, although I’m what you would class as early stage (if you saw me in the street you wouldn’t know I had PD) I came to the conclusion I wasn’t going to hold off on medication, I was having symptoms that were effecting my quality of life and if medication would help with some symptoms then I’m in. Just as if I had a headache I’d take some pain killers I view this the same way.

My neurologist was very much of the opinion I should start with levodopa, but he said he would prescribe Dopamine Agonists if that’s what I wanted. I was a bit all over the place, and in the end I actually got fed up of going over it all, reading differing opinions and research and I just got a prescription for levodopa and took it. The first week I was on a half dose, more importantly I wasn’t stressing about it anymore, went away to Spain for a much needed holiday and when I came back upped the doses to the neurologists recommendation.

So how have I found it? Well there are no side effects that I’ve noticed. Obviously, like most patients, my main worry was dyskinesia but I have a view that I’ll deal with that when or if it happens , I have noticed slight movement of my hand which could be it but not enough to make me stop taking it.

Symptoms wise, I get to bed and can sleep normally, I was in pain at night which has now gone. My tremors have mainly gone, sometimes kick off if very stressed and I’m near a new tablet. I flew away for Christmas and could deal with all the airport stress and COVID testing forms etc fine so it helps my tremors for sure. It has helped a little with my exercise induced foot dystonia but not enough to get me back hiking as I used to, this is where my neurologist is suggesting maybe add in some dopamine agonists to help with that, which I’m open to. My next neurologist appointment is in February and I’ll probably add in some then. The levodopa definitely has helped with it, but not cleared it. I do spinning every other day at the moment to keep fitness up as I used to walk miles every day.

So, I apologise for the post turning into a boring list of symptoms, I just wanted to explain, I find levodopa useful, I’m glad I started it, it’s helped my quality of life immensely. But I’m also possibly going to add in some agonists with the levodopa to see if it clears the foot dystonia, that decision I’ll make next month with the neurologist. From what I gather, we (PD patients) are all different, our symptoms are different and what medication we respond better to differs, that’s also something to take account of when reading these posts.

Good luck, don’t stress too much over it and talk it through with your neurologist .

Highlander63 profile image
Highlander63 in reply to Lwpd

Thank you for your response. I am grateful for the information you shared. I can relate to your experience and align with your approach. This site is very helpful.

Like you, I was diagnosed and sent away with a prescription for Azalect. stopped after 3 months as didn't feel well and had no improvement in my tremor.. 4 years later and haven't been near a neurologist, exorcise, supplements and Keto diet. My tremor is my friend, could be a lot more wrong with me

Before i start, just letting you know I'm in the UK. I was diagnosed in August 2021, my obvious symptoms being the Parkinson's shuffle and an intermittent tremor in my left hand. I was classified as 'Early stage' and asked if I wanted medication. I declined since I thoughtI could improve my gait (I have) and the tremor is not too troublesome. Since then I have found numerous references to the benefits of exercise for Early Stage PD. I looked up the Parkinsons UK site and found their (free) Exercise Toolkit under parkinsons.org.uk/informati.... This was somewhat helpful but I found myself floundering as I tried to follow the trainers.

I'm now enrolled on a (paid) Parkinson's-specific exercise programme with reachyourpeakonline.com/ . If you look it up, make sure you use this address because there are lots of Reach Your Peak out there. It's early days yet, but no floundering so far. They're worth looking up anyway; they are 2 physiotherapists who have focussed on PD and their insights are very helpful.

At the time of diagnosis, I also had pain in my left shoulder which I didn't realise was associated (frozen shoulder?). I found a local Bowen Therapist who cured this and it also helped unlock my handwriting (I'm unfortunately left-handed). She did tell me that the therapy helps with tremor - mine was improved but iIneed to go back after the stresses of Xmas etc. If you try it, make sure they're a good Bowen Therapist, not a generalist with Bowen option.

Grumpy77 profile image
Grumpy77 in reply to Fachgynan5

Why did you say unfortunate to being left handed?

Hanger112 profile image
Hanger112 in reply to Grumpy77

Because their tremor affects their left hand, which is their dominant (writing hand). My tremor is in my left hand but fortunately I'm right handed. If my tremor was in my right hand instead of my left, I would be unfortunate to be right handed.

Fachgynan5 profile image
Fachgynan5 in reply to Grumpy77

The reply above says it all. Being left-handed has never been a problem, it's just unfortunate that the PD chose my left arm.

When my husband was diagnosed and neurologist put him on Carbidopa/Levodopa and said see you in 6 months. One feels frozen in time - you have Parkinson's take this RX see you in 6 months. Wow!

No tremors. Stiffness of joints for which he took CBD oil as recommended by a Visiting Nurse.

Then, we found this site. Read about the HB1 Protocol and followed the instructions. With the combo of CBD oil and HB1 hubby found he could move around much better with ease. He cannot fast walk. Walks with a cane and will go for short walks. Uses a foot pedal to keep his legs moving when he's on the computer. Also have a stationery bike for his use.

Neurologists haven't helped much other than prescriber RX. A Neurologist just moved to our area who specializes in Movement Disorder. We will see her later this month.

Bought a wireless keyboard and mouse to hook up to our big screen tv. Plan is to put on Tai Chi and Yoga on big screen and do some movements together.

I was diagnosed 2 years ago at 53. The anxiety of the diagnosis made my very slight tremor amplify to the point where I could hardly manage. My neurologist said at that point starting c/l would tackle both troublesome symptoms. I was torn but terrified and started c/l Slow at first and super nauseous with each dose but after 3 months I was symptom free.

Highlander63, this group is the best knowledge base in have found since my dx in July '21.I was also in shock at first, but the best advice I ever got was "how do you know you need to take Rx drugs?", which after trying some suppliments have been able to control my tremors fairly well.

So far I have refrained from taking any Rx drugs and am doing suppliments only until I can't control my tremors anymore.

I am just recovering from Covid, which kicked my butt, but I do LSVT Big and walk on a treadmill normal days.

Kind regards

Scott

Be sure you read carefully the side effects. I was on it and I had extreme dizzyness and sleepiness. Fortunately, I did not fall asleep while driving. It had no effect on my tremors.

I was given azilect first, madapor added 6 months later and pramipexole 5 years later. I thought that was the standard sort of order.I took a ton of supplements but eventually settled on NAC and melatonin basically (mannitol too but on a break due to it causing terrible wind!).

I take as low a dose of madapor as I can manage to function normally, and have been pretty lucky with minimal side effects. Pramipexole made me a little less inhibited at first, but that was quite fun really. Equally it doesn’t seem to do much good so I am gradually reducing the dose.

This site is interesting with a wide variety of beliefs - take all advice with caution and avoid the depressing posts.

Exercise as much as you can too.

PD won’t be as bad as you expect.

Hanger112 profile image
Hanger112 in reply to Astra7

'Depressing' posts are valid. Ignoring them is foolish as you create false optimism which is faith based rather than evidence based. Telling people PD won't be as bad as they expect is another foolish comment. For many, who don't respond to meds., or exercise it's far worse than they expect, because they've been fed stories on here of other people's perceived successes, which through no fault of their own, haven't worked for them. Then they get criticised for writing about the depression which people like you have triggered in them!

Astra7 profile image
Astra7 in reply to Hanger112

I guess we all have different philosophies. I expect he will read or ignore whatever he chooses.

After 5 years only 4x100/25 c/l per day and 1g HDT and doing well. I stayed away of DA.

I was diagnosed 9 years ago after a few years of symptoms that finally made me get a checkup. I fought medication for a few years. First took rasagaline which I was told would do nothing for symptoms but would slow the progression. After a few years I started taking pramipexole. A few years later I added sinemet. I Took the pramipexole for many years and before I weaned myself off I was on 5 mg (1 mg 5x a day). A year ago after reading all the scary stories on here I slowly started reducing the dosage. I might add that I had started sinemet. When I was down to 2 mg a day I asked for Gabapentin. I was prescribed 100 mg 3 x a day. Now I am down to 1 mg of pramipexole which I take at bedtime. I am not bothered by the drug. Happy to have weaned down to one a day. I have asked for a higher dose of Gabapentin but cannot get my neurologist to increase. I believe it’s because I expressed that maybe I might not want to live through the process of this disease. Depression is a very common symptom of Parkinson’s and an antidepressant does help. Anyway the advice I would give to the early diagnosed is do not be so hasty in starting the carbidopa levadopa because of a slight tremor. Get yourself involved in a good fast moving exercise program, for me it was Rock Steady Boxing. That alone will make you feel wonderful. Once you start the Parkinson’s meds, you will need to increase the dosage higher over time. I have dyskinesia pretty bad now which I know is from the medication. That doesn’t bother me, nor do the tremors, I take the meds for the rigidity and pain. There is nothing worse. Now I am in the process of being tested for deep brain stimulation surgery. Because I want to have some more good years to enjoy my family and grandchildren.

Highlander63 profile image
Highlander63 in reply to Park4me

Thank you for your reply. Best of luck with your test for DBS. I have heard a lot of great feedback about Rock Steady Boxing.

Hi, im 51 and from Germany. Was diagnosed about a year ago. The symptoms I have are right hand tremor and inner unrest, ranging between no tremor and hand shaking like a leaf depending on on stress level. I have been on Rasagiline 1mg since diagnosis , i was also offered Pramiprexole, took it home , but never tried it, as im concerned aboout the side effects. I have been experimenting with supplements, currently taking HDT and NAC. I am shooting for 45 mins exercise per day. running, TaiChi, recorded sessions from internet or kayaking in summer. (on a sidenote: A member of one of my FB groups found 50 different YT channels related to PD Exercises). Currently the inner unrest and sometimes anxiety have a far greater negative impact than the tremor. Need to focus on stress control.....

I agree Carrow. I am concentrating on relaxing and de stressing everyday life. My hand tremor reacts to any stress or frustration. Thank you for your response.

I am a little surprised to read through all the comments on this question and not seen LID mentioned. A significant reason for delaying carbidopa-levodopa is the development of Levodopa Induced Dyskinesia. Other factors besides "time/duration of taking CL are being female, lighter weight, being PD subtype PIGD rather than Tremor Dominant and living in New Jersey. I remains to be seen whether or not the pulsating effect manifest in the delayed or immediate versions of CL as well as the new delivery mechanisms (post gastric - Duopa and continuous - subcutaneous alter the likelyhood, speed of appearance of dyskinesia and its severity. LID occurs in 30% of PwP.s after 5 years, 60% after 10.

kevowpd profile image
kevowpd in reply to FMundo

"A significant reason for delaying carbidopa-levodopa is the development of Levodopa Induced Dyskinesia."

Some have formed the view that this not the case.

Don’t delay, start today’: delaying levodopa does not delay motor complications

academic.oup.com/brain/arti...

Highlander63 profile image
Highlander63 in reply to kevowpd

Thank you for your input and the link. Interesting report on LID. This is all new info for me to digest. I think this is wonderful to have this input all from this site. Thanks

For me sinemet is the base treatment for PD all other drugs for me are just used to supplement sinemet. I am lucky i do not have tremors but ever other symptom i do have.Talk to your Doctor about a range of doses that you can try. When y our doctor gives you a dose to follow it is just a educated guess. If it works for you that's great but if does not work it is not a failure it is just one dose that does not work for you. Your life is not over it has just changed embrace it you have no choice. For 15 years i have been living my new life and looking back it has been up and down mostly up. Look at my posts here i have told every thing i have endured and ever thing i have done . I have been to Italy,france , Belguim, Netralands England Irland Scotland Yellowstone Grand Canyon .

One more thing Exercise is a key thing. Hope this helps and or inspires you.

Thank you so much for your reply. I am benefiting from all the wonderful input.

Hello Highlander63,

I was diagnosed ~5 years ago, also with tremor as my main complaint, and my neurologist started me on C/L. It certainly helped. However, because of issues with wearing off and poor adsorption when taken anywhere near mealtime, he added pramipexole, eventually at 0.5 mg, 3 x per day. He warned me about the possibility of impulse control disorder (which others here have mentioned), although he also said that was more likely at higher doses. I warned my wife to be on the lookout as well and we discussed some safeguards to put in place. It's still a matter of concern to me, but after 4+ years, I have yet to experience anything suggesting the beginning of a problem.

I later switched from C/L to Rytary, which is similar to pramipexole in that it helps to even things out. I now take both and this is the best control I've had. The Rytary is nice, and is quite affordable with my workplace insurance. Once I switch to Medicare that will no longer be the case. If you live in the US, this may be an issue for you also, which I only bring up because others have mentioned the drug, but I haven't seen anyone else mention the cost. (I suspect because it's a non-issue where they live). I haven't tried any of the other medications you mentioned.

A friend I met at a PD gym gave me a copy of "The New Parkinson's Disease Treatment Book" by J. Eric Ahlskog, available through Amazon and, undoubtedly, elsewhere. I found it invaluable, and I highly recommend it. If you prefer listening to reading, someone on this site mentioned the "Reflections on Parkinson's Disease" podcast by Professors Bas Bloem and Werner Poewe, which is pretty new. I have found that very informative as well. They spend a lot of time discussing different classes of medications. In my case at least, there's been a lot of trial and error when it comes to medication choices and dosing, and it's a moving target. Hopefully you have a neurologist who will work with you on that.

Thank for your reply. I am seeing a common thread with C/L medication from most that have responded.

Hi highlander. My husband went straight to levodopa with marked improvement in his slowness of movement. However I would suggest propranolol to improve the hand tremor first. Does have side effect of making you light headed when moving from sitting to sitting. But if you get up slowly it’s okay.

Sorry I meant sitting to standing.

You may also like...