HiI'm not sure I am in the right place here. I have a question. My husband has had parkinsons for about 12 years. He has been taking levadopa carbadopa. He has a new neurologist who introduced pramipexol slowly with the levadopa carbadopa of which he takes 1/2 of a 250/25 pill 3 X a day. Pramipexol is now at 1 1mg tab 3 X a day as well. Before seeing this neurologist, he was having alot of trouble sleeping through the night and alot of anxiety. He put him on fluoxetina 20 mg,which I understand is prozac, slowly building up to 1 a day, in the afternoon. This made an incredible difference in his life. Totally positive. He still has the tremor in his right hand and the Dr wants to illuminate this. He said the levadopa is no longer working so wants to wean him off it and increase the pramipexol slowly, which he has begun to do. I really wanted to introduce Vit B1 but am reluctant to do so with the other cocktail of drugs. It would be hard to know what is working. I tend to lean toward less is best but he is the expert and I don't want to go against his wishes. I wish he could remain on levadopa but thr Dr feels it is toxic and pramipexol is a better way to go. Having read yhe side effects I'm not sure which is the lesser of the 2 evils. We are so happy with the results of the Prozac but feeling a bit unsure of eliminating the levadopa carbadopa. Sorry this is a bit long winded. If anyone has an opinion I would greatly appreciate it.
Husband's neurologist is weaning him off ... - Cure Parkinson's
Husband's neurologist is weaning him off levadopa carbadopa to put him completely on pramipexol.
You are definitely in the right place. Is the half of the 25/250 his reduced dose or is that his original dose? Either way , it does not seem like a high dose for 12 years in. Usually dopamine agonists are prescribed in conjunction with c/l. If I were you I’d pay very close attention to his symptoms as he titrates down his c/l. He could end up quite debilitated without it. I would also suggest that you look into finding another neurologist (possibly a Movement Disorder Specialist) if the option is available to you.
That is his original dose. 1/2 tab 3X a day. But he is now cutting out the evening levadopa carbadopa 1/2 tab so now 2 X a day as the pramipexol is slowly increased to 1.5 mg 3X a day. I would like to begin Vit B1 but am not sure if this is a good idea.
i personally dont agree with his advice. I would want another opinion. To begin levadopa does NOT stop working but it becomes less effective and he would need smaller doses more regularly.
I would forget about B1 until you have him sorted and stable. What i read is people trying to find the right dose with very few ‘miracles’.
What age is your husband? Did the neuro tell you to watch for compulsive behaviours?
Neurologist thinks Levadopa is toxic? Far out. Never heard that one before 🤔
n.neurology.org/content/77/... It's a known issue.
Yes. If you're a petri dish. For those of us humans on the forum. movementdisorders.onlinelib...
google.com/url?sa=t&source=...
🙄
Be careful and adjust incredibly slowly eg make 1 small change per month and see how it goes. My experience is they all want to push this or that drug and that one is possibly the specialists favourite but just because it works for other people doesn’t mean it works for your husband.
My husband was on Prozac right at the start before PD diagnosis and yes, it made him feel really good, the euphoric, then he started displaying compulsive behaviours like spending lots of money, gambling, speeding when driving, eating too much. That is without any other drugs which have similar effects like pramipexol. After the compulsive behaviour came severe anxiety and agitation then he became suicidal and he had to be weaned off it. Next they put him on mirtazapine which turned him into a complete zombie and he spent a couple of years sitting in a chair with a blank face like he was 90 (he was 57). Then he was diagnosed with Parkinson’s which i blame somewhat on the mirtazapine because he would not move or do anything while he was on it and he deteriorated.
Watch for any manic behaviour and if you notice him in the pantry every 5 minutes or excessively amorous suddenly or speeding or buying stuff you don’t need it is time to reduce the dose back.
My husband seems to be best on small amounts of any drugs so when they give him 1 tablet 3 times a day we try 1/2 that for a good long while then decide if we should increase to the full dose prescribed. (To date we never have needed to)
Thanks so much for your reply. Yes .y husband too seems best on small doses of anything. I find it strange they always want to crank it up to the maximum level. This neurologist is very specific about very slow increases over a month and then orders blood tests before next appointment. I have always been leary of drugs full stop. It's like a double edged sword. Thanks again
My doctor started me on Sinemet and Pramipexol. I gained thirty pounds in six months and lost forty pounds after stopping it. I didn't have any complusive behaviors or other side affects.
A few years later, I switched to Rytary because I was falling asleep in the afternoons, and feeling foggy on Sinemet. The Rytary helped a lot.
I worry more about cognition then tremor. I've been having small amounts of off-time, especially if I'm doing something stressful. I have a pile of Sinemet left over from when I was taking it. I take 1/2 of a Sinemet and the off-time goes away.
I spoke to the PA who works for my neurologist. The neurologist is a MDO. We decided to try Entacapone, It reduced my off-time, but made me sluggish. My wife said it seemed like I was drunk. I split the pills and took 1/2 with my Rytary, and I still felt sluggish.
Of course, everyone is different. I have a friend who takes Entacapone and Nourianz. The list of things to watch out for is scary. It seems like compulsive gambling, nightmares and hallucinations are common issues with a lot of the drugs that have the potential to make you better. I think my friend said he has been taking them or five years and is happy with them.
Good luck. Get another opinion.
Tha k you for your very detailed report. I am so happy I found this site. It is somewhat terrifying to feel that someone else's life is in your hands. Have always leaned toward less is best and preferred natural rather than synthetic but parkinsons is a game changer. I keep a journal to record how he is doing. We see the neurologist once a month since he started him on this new regime and do blood tests before next appointment. The Dr. wants to stop the tremor. Step by step. The side effects of all this STUFF freaks me out. Such a double edged sword. He has been doing physical therapy for a month and a half for back pain. This, I believe has helped alot. The Dr prescribed pregabolina but having read those side effects I opted for physical therapy instead. During g this time he has a tally walked 2 and 1/2 miles back to our place after the therapy which was a break through for sure. He is religious about exercise at home and spends a couple hours a day. He is a fighter for sure. Thanks so much for your input.
If you live near a Rock Steady Boxing site, you should check it out. If you don't, check the internet.
Cheers!
We are familiar with rock steady and you can actually do the routine on line on utube. A great discovery.
Actually I think you do want to learn as much as you can about these medications as you integrate other people's comments and recommendations, they are going with their experience but not with expertise.
For example, pramipexole seems to dovetail quite well with fluoxetine, especially in managing each other's potential side effects. Yes you do have to watch out for compulsive behaviors and also have to watch out for some other side effects as well, such that it is very very wise for your neurologist to work in close consultation with a cardiologist. Yes you heard that right cardiologist... Because of the potential heart side effects that can go with dopamine agonists, so there must be monitoring by the appropriate specialist and that is cardiologist. So these two folks have to be willing to work together a little bit but don't let that scare you, it's just something that you should know about and discuss with your neurologist and talk about a possible referral to have a cardiologist to consult with the neurologist.
Another example of experience with out perhaps that much more general expertise is I see nobody has mentioned is that fluoxetine has a very long stable half-life, roughly 21 days, which is a specific feature that prescribers often select for intentionally because it is extremely long and therefore it's affect is extremely stable and unlikely to decay right away, and how this integrates in with use of the other medications is important to be aware of and discuss with your neurologist.
On the whole I don't think your neurologist has made any bad choices, but you do need to do the what ifs questioning routine with your neurologist and your neurologist does need to be available to you, so if you are in a country that does not allow or not provide for frequent and as necessary consultation with that neurologist, you do need closer retention from another consulting neurologist and these two have to feel comfortable working with each other so they do not get into an ego bashing game or a school bashing game.
The fact is that you can get side effects from all these medications, including the excessive eating and compulsive from the fluoxetine, but it is a rather rare side effect with fluoxetine and so the other person's experience was a little unusual. Feeling good or having a bit of euphoria does not necessarily mean you're going to see those negative side effects, but it is important to watch and be patient, since again as I mentioned, fluoxetine has an extremely long half life, which many clinicians actually rely on to stabilize the person. In its heyday fluoxetine was called a miracle drug, and with good reason. Very good brief introduction to pramipexole and also cross use with levodopa carbidopa and with fluoxetine is here at this link:
en.m.wikipedia.org/wiki/Dop...
This should really just be a starting point for you.
Other people have more experience than I do with carbidopa Ldopa combination, and also with the gradual decay of its effectiveness which can eventually also result in side effects. I do think that some of that has to do with the progressiveness of Parkinson's which gradually kills off your dopamine producing neurons and thus renders your ability to benefit from El dopa less and less as time goes on and you do have to replace it with something, but on the other hand the people who mention that you can't just quit it and you can become seriously impaired and suffer greatly if you do with a very difficult path back, those folks are correct, they are right so it is best to work very closely and frequently and carefully with your neurologist on this because it is like falling off a cliff and having to climb back after you have hit the rocks and the neurologist must be apprised of this possibility or at least you mention it so that you know it's a concern of your specifically. And it may be that this is one of the reasons for your neurologist looking at pramipexole combined with fluoxetine specifically because fluoxetine does have that very long stabilizing half-life AND goes about its work on the SEROTONIN side rather than on the dopamine side... This was the reason that at the beginning fluoxetine was celebrated so much as a miracle for depression but it is also effective with anxiety and even pain...I wouldn't be surprised at all if your neurologist specifically chose this combination of fluoxetine and primipexole intentionally partly because of this stability and because fluoxetine can help initially boost a person's mood and also can help with pain and anxiety quite a bit and because it is stable and works on the serotonin side. Does this very likely means that your neurologist is actually pretty thoughtful person. But you want to discuss this with your neurologist to find out exactly what his reasoning has been, and bring back to him the questions you have collected as a result of talking with people here about their adverse experiences or with cutting back El dopa too quickly or negative adverse effects with fluoxetine, versus the stage of responsiveness your husband has to l-dopa carbidopa and the stage of the Parkinson's disease and what changes go with long-term use of ldopa carbidopa.
I have seen it mentioned many times that often the selection of l-dopa carbidopa is a function of the stage of Parkinson's that the patient is in as the patient transitions gradually through different stages, so wanting to get off El dopa maybe related to that movement through stages and the lessening effectiveness prospect of el dopa due to the gradual killing off of dopamine producing cells in the brain which does come with parkinson's and renders l-dopa carbidopa eventually less and less effective, leaving you vulnerable to the side effects with less main effects. That is just a guess on my part however.
Thank you so very much for your incredibly detailed and comprehensive report. I think all things considered, my husband is doing pretty good, considering how long he has had parkinsons and most likely had it many years prior to first visit to a neurologist. I would like to believe he is doing OK due to thf fact, we have always been reluctant to increase medication. I have been following Daphne Brayn on Vit B 1 for parkinsons and was so hoping to slowly introduce this therapy. But I would totally want his neurologist on board. Its so scary when it feels like you are no longer in the drivers seat. Your explanation of everything is greatly appreciated and it is so encouraging to have people like yourself take the time to respond and especially with such detail and understanding. Again, many thanks.
My advice would be to get second or third opinions from expert neurologists. In the UK there is a website called Top Doctors and you have every right to consult with them.
My partner was diagnosed with a benign tumour in her heart (myxoma) which had to be removed. We were told she'd be opened up to get at the heart and we thought nah!
We found Mr Paul Modi at Liverpool Heart and Chest clinic who uses robotics to perform the same procedure. She has two small scars on her right side and recovery was in weeks not months. Superb!
Look around if you're not sure!!!
Has you husband tried fast walking?
Fast walking reverses the symptoms of PD. Medication does nothing to reverse the symptoms.
My husband read your book. It is encouraging and yes he recently has been doing more walking. Because of his balance, he was always afraid of falling. Thanks for your reply. Very kind of you. Good luck with your continuing journey.
Don.t be ashamed to use a walking stick. You can walk just as fast and a lot safer.
Kind regards
John
He has a bad tremor so difficult to use a walking stick and prefers not to. He is still walking pretty good but avoids crowded places fearing if someone bumped into him, he may lose his balance. Thanks John.
Hi. here does he walk? I recommend walking on grass. Most people are able to walk on a playing field. If they fall they do not hurt themselves.
If he walks every second day, as fast as he can, his symptoms will improve, and he should be able to reduce his medication.
He is walking and doing g pretty darn good. He gets tired but we are definitly seeing improvements since he started walking on a more regular basis. Thanks again.
Please keep it up and tell other PD patients about it!
The Pramipexole put me to sleep while driving even on my lawn mower you should check out Vibrotectile Gloves Dr Peter Tass Stafford.
My HwP was also very drowsy on Pramipexole. Do you use other medication without drowsiness? Are the gloves now available? Have you yourself had benefit from the glove, rebuilders451 , and did it help with tremor or with other symptoms?
The glove is currently seeking FDA approval there is information on youtube of people making there own gloves.
Have had Parkinson’s for 25 years. And the first medicine I was on was Mirapex, which is the same as pramipexole They said 3% would have serious side effects. I was in at 3% and the side effects were horrific. I am doing the vitamin B over load. I am following Daphne, the author who wrote about it after the doctors death. I am following her protocol. So far so good, been on two weeks, using the subcutaneous message by taking one pill every other day 100 mg and dissolving it under my tongue. Starting on my third week. So far so good. I may have to make adjustments after this week. I also have an Xanax .5 mg, but braces up during the day. If I get anxious I will take a quarter of one .025 or .075 MG. It’s work for me for the past 15 years I am also on one carpalevodopa every 2.5 hours. No probs for me so far. Just need to find my correct b1 dose. Sorry for any typos.
I also had bilateral dbs in the early 2000s. Life saver! Mixes well with the Stalevo (carpalevodopa)
Thanks so very much. This site is a gold find. Happy to heat you are going well in B1. I have read her book and follow her on FB as well. My theory has always been to keep it simple but I totally respect the expertise of Doctors as well. So nice to hear of others experiences. Thanks again.
Thank you for your thoughtfulful reply. I'm afraid I replied to you in the wrong box and directed my reply to Breezyb0502. Woops. It is encouraging to know you are following Daphne on B1 therapy. Happy to hear you are doing well.I have read her book and follow her on FB as well. My theory has always been to keep it simple but I totally respect the expertise of Doctors as well. So nice to hear of others experiences. Thanks again.
Bb
I am watching the B1 sites with interest. How have you got on with B1. Have you found your right dose yet.?
no problem!
have had PD for 5 years. During the first 3 years I took Carbidopa Levodopa. 25/100 every 4 hours and I was good! I even went to South Africa. Today is different….my doctor has had me trying rytary first dose of meds in the morning…..then ER carbidopa levodopa 25/100 every 4 hours. I feel terrible! Most symptoms are non motor…..help!!
Levadopa can be toxic to a person whose metabolism can't convert it to dopamine any more. Symptoms are usually hallucinations. We have a friend for whom this is the case.I suspected my husband might be too, but in his case it turned out that he has a benefit from taking Madopar in small doses. The neurologist proved it by giving him a challenge test while his assistant was video taping his body's responses to it. You mention that your husband is doing better so far, so I would give this neurologist a chance.
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I'm 72, Vietnam veteran and recently diagnosed with Parkinson.
