Negative Reactions to Sinimet?

I started to talk about my problems with sinimet in the "Medications" topic but thought I should start a New Thread to get some more feedback. When most people take sinimet they expect to feel a losening in the joints and relaxation and better control of the muscles. When I take the sinimet(which I take at a pretty low dose because of how it makes me feel) it knocks me out. I cannot function properly. Though I feel a slight losening of the joints (My caregiver forcebly moves my wrists and fingers to ease the tension) I begin to have an extremely hard time speaking or moving. Trips to the bathroom are scary and I feel like the drug "sucks the life out of me". I dont feel like I have very much control over my movements and my head is too spacey to trust myself. Doctors have not been able to help me get to the bottom of my adverse reactions to the sinimet, claiming because I do get a slight sensation of being more limber, "the drug is working". Has anyone encountered these problems when taking sinimet? I am scared to take more because I feel I will be totally immoble and possibly unconcious. It just makes me want to close my eyes and do absolutly nothing. My sleeping patterns make things worse when hopefully I'll get 3 hours at a time maybe I'll get back to sleep, maybe not. I'm always up by 5 but sometimes as early 2:30. Can anyone relate to the turns my PD has taken?

25/100 3xdaily Sinimet, 2 15mg Restoril, was taking Gabapentin/Neurontin for sleepig purposes but cut it out because I started taking the restoril and it didn't seem to be giving any addtional aid, .5mg 3xdaily Klonopin(doesn't seem to help my anxieties).

What medication for PD were you taking for 13 years? Then what made your neurologist

to switch you to Sinemet. As I know, Sinemet is the cornerstone of PD. Usually this helps the Parkinsonians to keep going. I'm in the high dosage of Sinemet already and without this drug I have no life. The only problem I have in taking this medication is dyskenesia, which is the side effect of Sinemet, sometimes it's mild and sometimes it's severe, I have good times too as if I don't have PD. If  Sinemet has a negative reaction to you, there are other alternative for you, you can try Stalevo, Azilect or Zeralapen. these are new medication that might help you. I wish you the best.

Flower Lady,Welcome to Healing Well.Have you looked into a sinemet comtan combo such as stalevo?If this worked for you it would increase the effective time for sinemet.If you haven't already I would check with my neuro on this.Wish you the best .Ed

Dear all, I am finding the comments about sinmet and all the other meds interesting and also intriguing. Many people if not all write of how they were put on medication immediately on diagnosis and nowhere have I been able to read about neuros talking through the various med options and even the option of not going on to meds immediately. It may of course, be that people had severe symptoms for a long period of time and so meds seemed appropriate from day one after dx. Can I ask if anybody discussed the options of deferring meds until absolutely necessary? I think I am also reading that in cases, the side effects of the meds can pose greater problems for people than the condition itself. Is there not a case for judging each case on its merits by neuros or could it be that most people who use and benefitfrom sites such as this [this is the best I havve found] are people who are seriously affected anyway? From my own experience my neuor DX me in jan 06 but I had known for 18 months prior to that and had been monitoring before I went to my GP. My neuro talked me through the various meds [although I was more clued up than he on the patches courtesy of the Parkinsons Soc.] and he said it was as much my choice as his about starting meds. I think he is sceptical about the efficacy of the patches but they do for me at present. It is what comes after the patches that keeps my interest in the various meds threads here. However. it is important for me to remember what Ed has been saying from day one about the uniqueness of the condition and also the medication - it reflects the uniqueness of us as individuals. Thanks to everybody for keeping me so informed.
The Bear

Bear,I was on meds after my first neuro visit.I have seen at least 5 different neuros since then.The one I have been with the longest,and still am, is a Harvard med school fellow with many publications on pd.He told me that there is much research indicating that mirapex and sinemet may delay progression of pd.
I've heard many horror stories about pd meds,and I wonder if some of the side effects mentioned may just be progression of pd.I don't advocate going on meds if you fuction fine without them.On the otherhand if your functioning is impaired they become an alternative to decrease the effects of pd.How long to wait is obviously an individual decision.Yes we are all unique,and so is this disease effect on us.
Good to hear from you again strengthen me.Stay well all,and a penny for your thoughts.Ed

I am new to the forum, and glad to have found it.
I've been taking Sinemet for years,but lately I 've noticed that 5-15 min. after taking it, I start getting tremors. I take 1 1/2 Sin., then 2 hrs. later I take one Stalevo 100 + 1/2 Sin. 25/100 - I get the same reaction. I've tried taking only one Sin. at a time,and the Stalevo without the Sin., it makes some difference, in that the tremors aren't as severe, but their there none-the-less. Either I'm taking too much or too little.
I also take Synthroid. Lipitor, Sinemet CR 50/100 at bed time,Klonopan, Lexapro. The "OFF" periods are often so bad, that I've a it of anxiety.
Anyway, I'd like to get to the bottom of this curious turn of events with my "friend' Sinemet.

I have never believed my husband has Parkinsons. It was first suggested 3 years ago and he is no worse. Says he feels as if his right leg is 'dragging' when he walks but can run OK. Handwriting is a problem but he is currently waiting surgery on his shoulder that side. He has seen 3 neuros and been given first Sinemet and then Rasagaline. The Sinemet was awful. By the time he had worked up to full dose I believed he had PD! He shook, could hardly walk, was FILTHY tempered, couldn't write at all and just sat all day like a zombie. Asilect wasn't SO bad but getting on that way. We have asked for a Dat Scan and the beuro was SOOO peeved - I thought he was going to throw us out of his surgery. He is supposed to be sending us details I'll believe it when I see it. Up shot is my husband says even if Dat scan show PD he is not taking drugs until he absolutely jhas no choice. Neuro told us he is better taking them sooner than later. If I got his sort of hourly rate I'd say that too. We just can't seem to find a neuro who seems to care about the person and not the condition. Why should a drug meant to help make things worse? Dr couldn't tell me. can anyone else?

JudeD,Excellent point you make about dehydration.Seems as we get older we drink less fluids.It is a common problem my wife encounters as a geriatric nurse,and it seems to go along with low blood pressure at least in my case.
For awhile after taking mirapex I had similar problems as you've encountered.With time my drowsiness on this drug has all but disappeared.I did attribute it to getting used to the drug.Stay well.Ed

Hi, I'm new here and I'm very confused - looking for advice/shared experience. Diagnosed 5 years ago with idiopathic PD, aged 46. Other causes were ruled out by MRI, brain angiogram. It is gradually worsening - tremor in left arm,cogwheel resistance, dragging left leg, great difficulty walking, slowness; all the typical symptoms but progression is apparently much slower than typical. However, despite a horrendous divorce and other difficulties I have never beeen depressed. This seems to perplex the doctors. I'm just very grateful! Started off with Selegeline - no obvious benefit, though might have helped mood. Then tried Neupro patches for 9 months - had a dreadful effect on my already awful walking and no obvious benefits so stopped it. All the time i was  taking it I saw huge green spiders, heard voices (luckily very benign, mostly just a few neutral words) and developed mild dyskenesias. Sinemet was next -very scary. I became frighteningly confused - couldn't follow conversations, couldn't work out what was happening round me.Very frightening indeed.It was impossible to function at any reasonable level while on it so it didn't last long. I now take Azilect - again no obvious physical benefit but possibly raises my mood.My biggest fear is that the ineffectiveness of the drugs is because I have MSA or supra-nuclear palsy. I am told this is not the case.

 I have an NHS consultant and specialist nurse and also visit a lovely, encouraging, private neurologist once a year.I live alone and try very hard indeed to be as positive as possible, despite often feeling very grim. I am keen to find a drug/combiination of drugs that will help me but all I seem to get are the side effects without any benefits. Even coffee (which apparently can help PD symptoms) has a very unpleasant effect on me, making the temor completely unmanageable and turning me jumpy, twitchy and unable to focus either visually or psychologically. Now my NHS consultant has told me - out of the blue - he doesn't think I have Parkinson's disease because my symptoms and drug reactions are so untypical. He's ordered a DAT scan plus apomorphine injection. Meanwhile my private (much more experienced) neurologist says he is quite sure I have an unusual form of Parkinsons and I should carry on dealing with it iin the way that suits me best. He says he doesn't use DaT scans much himself as he doesn't find they're always very helpful . However it is very difficult to refuse the NHS treatment/investigations as you get labelled non-compliant and generally awkward. I have tried to stick to my guns and refuse drugs which weren't helping but I'm not good at standing up for myself and often agree to thibgs I don't want. I am simply dreading the apomorphine injection. As 60mg of Sinemet sent me, effectively, demented I am terrified of what apomorphine will do. I should be very intesrested on others' experiences.

I must confess that at the moment I feel I am being 'punished' for doing too well. It occurs to me that if I had been a 'good girl' and taken all the drugs that were shoved at me (which I would have done without the support of my private neurologist) I would be much worse - and therefor 'typical' and the doctors would be happy with me. I want to shout at them that reason I'm doing 'too well' is because I have listened to my body and not bombarded it with drugs that made me feel worse.

I seem to have sounded off a bit! Advice welcome!

Jan

Thankyou so much for your reply. I am very interested to hear that your husband's symptoms haven't worsened greatly over the last few years. It reinforces my belief that the slow progression of my PD isn't nearly as unusual as my consultant thinks!

I was also very interested in your observations re the onset of your husband's symptoms and his pericarditis. about a year before my symptoms became noticeable I had a strange persistent and very severe pain in a nerve in my thigh - I've actually forgotten what it was called! I've often wondered if some sort of virus got into my central nervous system at that time. Very curiously my daughter experienced the same leg nerve pain and about a year later had a series of very serious brain ' spasms' where she lost movement, speech and memory several times over a period of a week and took a year to fully recover. Almost too much of a coincidence. I'm  I feel there is an awful lot more to this condition than the simplistic 'one size fits all'/'not enough dopamine so let's shove in a bit more' approach of so many doctors.

My private neurologist frequently emphasises to me that, despite what you read, only about 25% of the processes involved in PD are understood. Like you, my experience of all the various doctors I've been examined by has left me pretty unimpressed. There seems a distinct lack of open mindedness and, in my experience, a painful lack of scientific rigour and, at times, common sense.

I have my DAT scan tomorrow - if I don't run away! I have abandoned my independence and a friend is taking me and another is coming with me to get the results next week - armed with lots of the questions that I always get too flustered to ask!

Thankyou again for your kind interest - and my very best wishes to you and your husband.

Jan