Within the last 3 weeks since my husbands neurologist told him to stop taking cordoba/ lopadopa (not sure how to spell it) he seems to be more spacey and weak. He has taken this for the last 2 1/2 years. He was up to 5/6 pills a day. Is he going thru withdrawals? We are taking him off 1 1/2 pills per week. He is actually taking only 1 1/2 right now. Are we taking him off to fast? He has definitely changed and not for the better. It seems like he is declining more rapidly then he had before. Any feedback is much appreciated. Thank you in advance.
Not sure what is happening?: Within the last... - PSP Association
Not sure what is happening?
33 Replies
•
Hi Sluxford,
My first thought is, what the heck is your neurologist doing? You need to find out what the purpose is for taking him off this is. My husband has been on sinemet(levadopa/carbidopa) for at least a couple of years now. He is up to 16 per day. Last 2 he takes at bedtime, and when he needs to get up during the night, he can barely walk with the aid of his walker and me guiding him and helping him from falling...He literally cannot put one foot in front of the other. He is really spacey and week, as you say your husband is. |My hubby is still in this condition in the morning until he takes the sinemet, he prefers to stay in bed until the meds kick in, because he can't function. If we were to take him off it, he would be bed bound for sure. If I were in your position, I would be getting a hold of the neurologist and asking some questions, and perhaps a second opinion from another neuro. Best of luck with your journey!
joan
Hi Joan, my husband was the same at night on Sinemet so he now takes Half Sinemet at night. It is a slow release version of Sinemet and he is much more stable at night now. He still falls unaided of course but can help himself to get out of bed and stand while he uses the bottle.
Nanna B
Hi Sluxford
Why is the neurologist stopping this medication? Did some side effects take place?
This medication doesn't usually work for PSP sufferers (in controlling motor problems), although some may have some benefits for a short time and then require increasing doses, but eventually all benefits stop and side effects can ensue. (It can be helpful in patients that have a type of disease called PSP-Parkinson's).
The medication is Sinemet (Carbidopa and Levodopa). It should be withdrawn slowly, but this process will vary with each individual. Withdrawal side effects can be fever and muscle rigidty. Also agitation with increased heart rate and breathing and sweating. Some of these symptoms can be associated with a rare condition due to Sinemet withdrawal called... Neuroleptic Malignant Syndrome and your neurologist needs to rule this out.
Only your neurologist can advice about the rate your husband should reduce his pills, after noting his current "withdrawal symptoms". It sounds like it is too fast at the moment. Once on Sinemet for so long, the brain (neurotransmitter systems) takes a long time to readjust when the levels of this medication starts to drop (due to stopping the pills). It's possible that the neurologist will have to experiment with putting him back on more Sinemet and withdrawing even slower, along with any other medication that may alleviate such withdrawal symptoms.
I am only theorising because my wife with PSP is on no medication. Our neurologist does not prescribe to any of the raft of medications given by some neurologists. He says it is all a "band-aid" approach. Often (but not always) PSP sufferes are better off with minimal medications for symptoms.
I'm sure others will feel differently to our approach.
I hope those who have withdrawn from Sinemet will give you their experiences.
Take care
T.
jimandsharynp• in reply to
Strelly, I am in agreement. What do you know about Amantadine for PSP? My wife isn't on anything. She was on and off Sinimet and we noticed not difference either way so stopped taking it. No problems with withdrawal symptoms in her case. Max she was on was three pills four times a day.
Jimbo
• in reply tojimandsharynp
Hello again Jimbo
I have done a bit of research on most of the medications and supplements taken for PSP/CBD as part of understanding these diseases, even though my wife takes none of them.
However, my knowledge is pretty limited.
Amantadine is an antiviral drug, but there has been "some evidence" of having mild benefits in Parkinson's type conditions. The reason for using it with Parkinson's and PSP in particular is due to its action on certain of those brain chemicals necessary for neurons to fire (neurotransmitters). In PSP several of these neurotransmitters have functioning problems (some are depleted, and some are affected by this depletion and some become overactive, along with some malfunction of the bits that take up these chemicals, called receptors).
Anyway, Amantadine increases the release of dopamine and blocks its reuptake (at the neuron endings) and also blocks another neurotransmitter's (glutamate) receptors. These neurotransmitters are important in motor function, that is, movement. One of the gurus of movement disorders (and PSP in particular), Dr Golbe, wrote the following:"There has been no controlled study of amantadine in PSP, but retrospective and anecdotal observations (Nieforth and Golbe, 1993; Kompoliti et al., 1998) suggest that it may have a mild, transient, symptomatic effect on the motor parkinsonism and may have prompted its widespread use."
A more recent study noted "Three retrospective reviews of treatment in PSP have considered
amantadine. Marginal benefit in symptoms (parkinsonism and dystonia) in very few patients were reported in all. In the only autopsy confirmed report, two of five patients improved with amantadine but three patients had shown deterioration."
Most evidence for the effectiveness comes from anecdotal sources, where individuals are given the medication and the doctors "check for any signs of improvement in the patient's movement". With most PSP medications it is "hit or miss", but many sufferers will pay the price of mild to severe side effects, with only short term gains (if any).
Hope this helps!
Cheers
T.
jimandsharynp• in reply to
Strelly, as always appreciated! Do you have physical therapy for your wife or do therapy on your own? Jimbo
• in reply tojimandsharynp
My wife is attended each week for a short time by a "young" female physiotherapist who specialises in "neuro-physiotherapy" where many of her patients have Parkinson's. She is very good and has given me the confidence to do more with my wife than I thought I should attempt. So, during the week she expects me to do certain"exercises" with my wife. The Physio is very conscious of my wife's fatigue, but she believes (and so do I) a few simple exercises will keep her healthier from the viewpoint of keeping limb muscles supple, bones weight bearing (prevents osteoporosis), increasing heart and breathing rate that promotes good circulation (preventing blood clots etc). Also, exercises can also be an aid to keeping the bowels working (promotes peristalsis).
6 months ago I believed my wife was only capable of shuffling a few steps while performing transfers. Now (only once a day) I manage to "walk her" with a Zimmer frame the length of the home. She has a pedal gadget for exercising legs and arms while sitting. She has weights for her legs to help increase muscle tone and assist with a knee problem.
While physical therapy will never slow the progression of PSP, it can be an aid in giving my wife some form of mobility. I do not know if she will be the type of PSP sufferer that will eventally lose most movement and be resticted to bed, but I'll keep up this exercise routine as long as possible.
For those reading this post who are in the early stages of PSP and still can walk relatively unaided, then try something that Parkinson's patients have been doing that can be better than some exercise regimes. Learn to do the Argentine Tango with a partner! It benefits balance and locomotion.
Cheers
T.
Dear Sluxford,
I don't recall my husband on sinemet, but he did go through something similar with Cabaser. And he still (?) is on some each day. (Sinemet is something I recall that my father in law was on in mega doses - for Parkinsons)
Are you keeping a diary of what is happening?. For my husband - I found it really hard to quantify and explain the real noticeable differences in activities (& lack of activities ) in our 20 min consults & feel if I had made notes (albeit cryptic) it would have helped to explain what and when...
Our neurologist (with a little prodding) also suggsted we phone if there were any changes to report (In hindsight I should have made more than the one phone call). If you haven't phoned - suggest you do as there is no harm..
From what I've read some think there could be up tp nine different sub-types (?) so the neurologists have a lot to think of in the context what may or may not work with your husband. For some prescribe lots of medication, some suggest none - for example about a year my husband was on..
0600: 2 X Madopar rapid 125, 1 X Pantoptazole 20mg, 1 X Natrilix 1.5mg
0700:3 X Madopar rapid 125, 1 X Madopar capsules 62.5, 1 X Cabaser 2mg, 1 X Sifrol 4.5mg ER, 2 X Amantadine capsules 100mg
11.30:2 X Madopar rapid 125, 2 X Amantadine capsules 100 mg
15.30:1 X Madopar rapid 125, 1 X Madopar capsules 62.5
1800:2 X Madopar rapid 125
20.00 :2 X Gabapentin 100mg 1 X Madopar capsule 1 X Mirtazapine (Avanza )
The names of medication and their value mean little to me, other to think each person is different, and each doctor works in differently with each client. I am personally an anti medication sort of person, for with everything good, there is a side effect (?) so it horrified me when the medication started. But then I am not the one with PSP and no longer having to manage its effects like you 24 hrs a day.
Best of luck.
Regards,
Alana - Western Australia
Alana, I agree, it is often difficult to tell exactly what symptom is causing a change in a PSP patient. With my wife fatigue is a major issue. So without proper rest she is much, much worse in mobility and cognitive. I think this type thing can account for what we may perceive as problems with or without a particular drug. Sometimes it's just the path that PSP is taking in a person and is unrelated to anything else, IMHO
Jimbo
Why is being taken off the meds? Usually the dosage is increased not decreased as the PSP progresses.
hello
i am on 2 modopar twice a day and i have just strted amantadine 2 pills in the morning to be built up to 6 a dya after two monrhs- i have felt the benefit of the amantadine in particular in my voice amd my walkiing or shuffling rather !!
Dear Sluxford,
I would tend to agree with Strelley's reply to you. I only wish that the consultants had never given my father co-careldopa at all. Maybe sinemet at night would have been a little help but the side effects, ultimately, were unbearable and irreversable. Dad developed awful dystonia (uncontrolable muscle spasms) which we were never able to stop. Dad was on the levedopa tablets and sinemet for five years and frankly they were of no real use to him ever, but our neurologists did not seem to know what they were doing or what disease they were dealing with.
Now, with hind sight, I would agree with Strelley's consultant's approach. The possibility of side effects is too high to risk and sadly, ultimately the disease will run its course.
It could be that your consultant is withdrawing the drug too quickly. I do understand your desperation in trying to find something to help. I was exactly like this myself. It is indeed a bitter pill to swallow, in that actually, there is no or very little help out here for us yet.
jimandsharynp• in reply to
Nader, Glad you posted about Dystonia because it is not frequently spoken of when Carbadopa/Levadopa are mentioned. The thing is if you get Dystonia as a result of the drug stopping the Dystonia will NOT happen, even if you stop the drug. Dystonia is irregular movements of the body like some who have with Parkinson's without ever taking C/L. That is one reason we stopped it for my wife. We couldn't detect any major changes on it so why run the risk of getting unreversable Dystonia? Again, thanks for posting a real life experience that most don't hear about with C/L drug.
Jimbo
• in reply tojimandsharynp
Dear Jimbo,
If only we had known I would never have let my father near the drug. The dystonia spoiled any pleasure, in the latter stages of the disease, that he could have had. It caused me grief to witness it and as for my father, well, it was just the end as eventually it interfered with his feeding and his eye sight and any touch, ie when I wanted to give him a kiss or a cuddle, as it triggered the spasms. We were not given the diagnosis of PSP until nine months before he died! That's our great NHS! I am a bit bitter about it all.
jimandsharynp• in reply to
Can't say I blame you for being angry. What an ordeal. This PSP is tough enough without the BS you have to get from healthcare "professionals". IMHO
• in reply tojimandsharynp
Dear Jimbo,
My father could not speak for about two years and of course I went everywhere and talk to every medic whom I thought could help. I got absolutely nowhere until I fixed a false, private appointment in my own name to see a movement disorder specialist. I apologized to him for doing it and showed him my photos of Dad. After a few questions he diagnosed PSP, in about five minutes.By the last couple of months, I started to lose my own voice, it was as though I knew there was no point asking for help anywhere. I was becoming dumb, like Dad. Dad died last Friday, and guess what, in less than twenty four hours my voice came back. Seriously, I was getting worried about myself but now I am just resting and resting. Thank you so much for your messages.
jimandsharynp• in reply to
Nader, touching post. Our hearts go out to you!
shasha• in reply to
YES INDEED A VERY TOUCHING POST
I also agree with Strelley. My husband had PSP (he passed away last Oct) & was never on any medication either. His neurologist agreed also that it wouldn't really help that much in the long run & the side effects & getting off of it wasn't worth the short term benefits & the disease will take over no matter what.
If you have any questions concerning your husband's medication it really would be better to sit down with his doctor & ask all the questions you have ever worried about.
Hope you get the answers you are looking for
annielee
Thank you for all the responses. I'm also very anti-medication. So I don't mind getting off of his meds. We probably need to take it a little slower. The only med he will stay on is Azilect. One tablet every morning. Are Dr. said that the corvidopa/levadopa has no benefit and he doesnt want it in his system any longer. He said take him off gradually which maybe we r just going to fast. Thanks again! Sluxford USA
Definetly in my glazed state seems a Iittle to me blux Suzy's husband
And psp
It is my understanding that drug may not be effective in PSP patients OR if it works it will only work for a period of time. In Parkinson's it works very well over a long time. My wife was on the drug, then off, then back, on and now off for good. It just didn't make a difference in taking the drug either way. I've heard that there can be bad side effects taking it for a long time and that is another reason we stopped. Are you sure the changes are related to being off the drug. As I understand the drug it helps with mobility mostly. Check with your neurologist. Did he/she recommend not taking it and was it because it was not working? There is another drug that is similar and is sometimes given it's called Amantadine. I'm old school and don't believe in taking medications that aren't totally effective in what they are suppose to accomplish. Lots of people over medicated in this world.
Jimbo
HELLO JIMBO I AM ON AMANTADINE NOW AS WELL AS MODOPAR - I DO THINK IT HAS HELPED A BIT WITH MY VOICE AND THE WALKING
If you think it's working and side effects don't bother you then stay on it. Just be aware of long term usage effects. With my wife we experimented by going off then back on Sinamet to verify there was a benifit, there was not.
THANKS JIM - I WILL BEAR THAT IN MIND
I often think the doctors are just throwing things (meds) at the wall to see if anything sticks.
• in reply tojrock777
Dear jrock777,
Your assessment of doctors did make me chuckle, I agree with you, I thought doctors were supposed to be intelligent! I must say, that by the closing stages with Dad, I think I got to the stage where I felt like trying anything, and the amazing thing was that I suggested cannabidiol and that stumped them as they did not know what it was used for. I had a newspaper cutting which I had kept since 2011 and when I showed it to the consultant she read it avidly and said ' yes, but that is for MS ! She had not kept up to date on things obviously and when she inquired at the hospital pharmacy ( a big London hospital), they did not keep it in stock as they were not authorized to prescribe it by the health authority and they were actually treating MS patients in a special clinic on the hospital site.
Jrock777, sometimes I feel like it is all just a crapshoot-that they just throw RX in there and see what sticks. Our Dr. took him off of two of his medications cold turkey and the results were a disaster. The problem is the neros are just treating the symptoms and really are flying blind as there have not been enough studies and it is a relatively new disorder. We have just seen a psychiatrist for his moods swings and raging anger issues. Certain antidepression drugs such as Zoloft actually help increase neurons in the brain which help with cognition and memory. In other words instead of fizzling out you will be developing new ones. They did research on Alzheimers patients which have similarities with Tau proteins in the brain. Also being calmer you are less prone to falls. And the reality is we all want our loved ones to be able to be comfortable and be able to communicate with us.
hi I am new on here but although my hubby has been diagnosed with parkinsons and lewy body dementia they have spotted a assessment he had by a psychologist in jan 2012 now they say it may put a different perspective on these diagnoses he two was on 4 times daily 125by 25 levodopa but they seem to want to bring it down and I said his legs are not great now and his freezing has started coming back and so has his falling, but they said that they would expect that to happen anyway with bringing his tablets down because its better than the hallucinations he"s been getting which high doses of levodopa causes over time and like your hubby mine has been on it a long time but be as it may I would like to know if you get any symtoms of dementia with psp then I could understand more
Hi bluediamond,
Our neurologist is leaning towards either PSP or CBD for my husband, he is still uncertain. My husband is having most of the PSP symptoms including dementia. It is not the dementia like you think with Alzheimers it's more of a cognitive/or processing issues. He is very aware that he is not understanding what is going on. Sometimes it's just a slowness of thought. He has a hard time keeping up with conversations if you talk too fast or if more than on person is included in the conversation. I can be talking to him, and he knows he should be able to understand what I'm saying, but a lot if the time he can't. says it's like I'm talking in a different language. Eventually he understands, but it is VERY frustrating to him. He is not on any meds except for Ambien for sleep, and Cymbalta for anxiety and depression. Not sure if this is what your husband is experiencing, but I have heard other people with PSP also have this same issue.
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