For several years I have been taking madopar every three hours during the day, together with entacapone, rsagaline and rotigotine patches. I also top up with dispersible madopar. Increasingly I have been swinging violently between on and off periods every couple of hours As i start to wear off I have massive sweating and as that finishes I plunge mentally and physically. I can go from feeling fine and upbeat to a shuddering shuffling heap in less than 15 minutes and vice versa. I am also increasingly aware of physical agitation when I'm on and a tendency to talk to much and feeling so ill in the troughs that i can't even speak.
I have beentrying to get an appt with my Gp since before christmas and have given up. I did chat to a PD nurse but she would only talk about DBS which I don't want. A couple of days ago I decided to try to lower my intake of madopar as the constant swooping on and off is exhausting and I was also worried that the mood swings were becoming so severe I wasn't able to function .
I have been taking between 800 - 900 mg of madopar per day with 5 entacapone.
Yesterday and today I have taken my usual 100mg slow release at 7 am but am substituting 50mg for the 3 hourly 100mg and have only taken 2 entacapone. So i'm taking just under half of the previous dose.
So far the difference has been very marked. I have been 'level' throughout; no on or offs ; no heat rushes. It feels very strange actually - I've lived on a roller coaster for so long it's very odd being flat'. I keep expecting to suddenly plunge into a really bad trough. I can't say i feel well but on the upside i'm not feeling extremely ill either. My motivation however has completely gone - I've sat on the sofa eating biscuits for two days. It feels like a permanent mini-off period. Is this what i should expect to be my 'normal' after 13 years with PD ? if it is I'm not sure how I'll cope with being permanently flat!
Has anyone else reduced their dose succcessfully?
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I have taken entacapone with senimat almost the same as madopar and i would feel a cold sweat come up my back my breathing would get faster and i would crash. This would happen 3 hours after taking them. Would take 1 or 1.5 hours to recover.
I stopped taking entacapone and this stopped. I now take senimat (25/100) 2.5 tabs 5 times a day. entacapone seems to have been the problem.
I am 62 and 10 years Dx. with PD. I exercise daily (CrossFit). I have found if i eat small meals every 4 hours 2 hours before my meds they last longer and take affect sooner.
Don't give up work with your DR. and find a med that works for you.
Thanks very much Bailey. It hadn't crossed my mind it could be the entacapone causing the hot sweats but what you describe is so familiar. I've cut back to only one entacapone - I'll have to experiment to see what happens if I increase the madopar but not pair it with entacapone every time I take it.
It;s so useful to get to hear other's experience on here. Thanks again
Dear pen1 and Bailey from Texas. Thank you for sharing your experiences. I have lived with the "Beast" for 13 years and am currently trying to review my meds
I was on Sinemet 125 (2 tablets 4 times daily) together with Amantadine (100MG twice daily) and Azilect (1MG once per day) and that regime had lasted me well until late 2014 when I had a Brain Op as part of a Clinical Trial (which did not work for me) and I started suffering from Freezing (and Falling) and severe Dyskinesia (I have lost 30 lbs since the beginning of 2015)
In July 2015, I was recommended to switch to Stalevo 200MG to replace the Sinemet (Levodopa + Entacopone replacing only Levodopa). I was also given Madopar Dispersible to take when I was caught short. I was also put on Sinemet Slow Release 100MG to take at bed time. I changed the Stalevo 200MG to 150G because I thought the 200MG was taking so long to kick in']. I now take the 150MG 6 times daily. The problem is it doesn't always kick in - especially in the evenings when I cab be left like a Zombie but I noticed that when I go to bed in that condition, I sleep better and I don't get the night time dyskinesia (proved this for over a week now but it does clash with evening activities!)
What I would like to try now is to replace the Stalevo with Sinemet AND Entacopone (and not take the Entacopone as often as the Sinemet)to see how this works for me
Any comments?
I am also going to take the Rivastigmine patches - following the Trial in Bristol which found it helps with balance(which is a problem for me) and gait
You sound as though you've had a tough time. Am I right in thinking you are in the UK?
I've not heard of the patches you mention or the Bristol trial. I currently use rotigotine patches (Neupro) but have had vertigo for about 6 years so I will research the Bristol trial as it would be great if it helped to keep me stable!
I'm a bit surprised you take sinement and entacapone. I understood that the role of entacapone is to prolong the length of time the madopar works in the body. I was told that I wouldn't need it if I switched to sinemet as it already contains a 'prolonger' which does the same job as entacapone.
All I can say is that after years of taking entacapone and madopar together every 3 hours and recently finding they only lasted 2.5 hours I have cut to one entacapone in the morning and reduced to 50 mg madopar every 3 hours and have expereinced no on/off swings.
I've thought for ages that little and often must be the best way to take madopar rather than great slugs of the stuff less frequently. However, I won't believe my new regime is working until I've had a week of it and am still standing!
As always with PD it seems the best advice is try everything and if it works for you stick with it.
That's interesting - I thought that the carbidopa in sinemet did the same as entacapone. It explains why I can take madopar and entacapone but lost the plot completely when I tried sinemet.
Hi pen1 - good to hear to from you. Yes, I'm I the UK - The Peak District National Park. Froggatt is a village about 9 miles west south west of Sheffield
I will need to check up about Sinemet and Entacopone - I just spoke (via Skype) to a Neurologist who confirmed my plan to switch from Stalevo to Sinemet and Entacopone. I will check this out and get back to you
I agree little and often seems like the way to go. I hope your new regime is successful. Doesn't life without On/Off swings sound wonderful?
The Bristol Trial of Rivastigmine can be found on the Web - key in Rivastigmine, Emily Henderson Parkinson's will give you what you need
I can't imagine having vertigo for 6 years. I do take a water works pill which causes LBP - especially when I am in the gym - but that is livable with. Have you seen a Neurologist about this?
You're not a million miles away - I'm the other side of Sheffield just outside Retford. I managed to get a referral to the Hallamshire a few years ago whichwasa vast improvement on the geriatric clinic I'd had to attend locally (in my forties!). I wish I lived in Sheffield - there seems to be a lot going on there for PWP.
Iwill definitely follow up on the rivastigmine patch. I did tell my neurologist about the vertigo but he didn't think it was connected with PD and wasn't interested to be honest. It comes and goes and I've learned to live with it, though it did put the final nail in being able to work. I was a lecturer but had to retire early 4 years ago.
I'm hoping that by reducing the madopar I'll get more of a life back . . . .
Good to meet you on the site. Who did you see in the Hallamshire? I see Professor Oliver Bandmann. The trouble with a lot of Neurologists s that they don't all buy into the idea of Patient Empowerment. I have attended a number of meetings on this general topic and although the theory is clear (we should be workings as a partnership on Parkinson's) some of the neurologists are not there yet.
Yes, Sheffield is a good pace to be if you are a PwP. The Branch is very supportive (I have persuaded the Branch to fund a Singing Group and a boxing Training Class) and I am working with a lady whom I am hoping to persuade to take up training on the RGRM rhythm method (Google it for yourself, just add Parkinson's to RGRM on your search) and then set up classes in the branch
We do a lot of activities as a branch - we have a badminton class starting today for example - my next class is Saturday morning in Broomhill, Sheffield at 10.30 which is a Posture and Stretching class, then on Sunday we have our monthly pub lunch.
I did a check on Google and Retford is 35.2 miles from Froggatt so you are roughly 26 miles from Sheffield. Are you mobile? If you were you could always join the Sheffield branch which has it's monthly branch meetings on the first Tuesday of every month?
I did see Dr Bandmann a couple of times in Doncaster but I'm now a patient of Dr Grunwald. I'd love to be able to get to all the activities in Sheffield but I've given up driving - lost my confidence. If my new lower drug regime works I may feel braver again! You certainly have a very lively programme
That would be lovely - it would be great to meet up!
Unfortunately my driving confidence means I only do local driving such as to and from Bakewell.
We can keep our fingers crossed that both our drug regimes work out. ]'m seeing Oliver Bandmann on 23 February where I hope to agree on my meds
I'm going to suggest that I restart on Sinemet and with less doses of Entacopone, keeping the Madopar 100MG for "when in need" times and with the Slow Release at bed time
I researched the make up of Sinemet and it doesn't have the Entacopone component . It also states that Stalevo is a handier (meaning less tablets - but that is not an issue for me) way of taking Levodopa and Entacopone.
Tell me, what other meds do you use and how fit are you in general terms?
Just about to go to bed - much tireder than on higher dose. Thanks for your reply. I love bakewell! I will write and answer your latest reply tomorrow when my eyes aren't trying to close
Have you come off sinemet altogether or have you stuck with the half dose? Your withdrawal symptoms sound horrific. I don't seem to have any - yet! I am waiting with great trepidation for some horrible reaction to the lowering of my madopar intake. How long did it take for your withdrawal symptoms to start
I was very interested in your experience as I started to suffer from vertigo about 6 years ago- shortly after beginning to take madopar. The neurologist said it was nothing to do with PD and wasn't interested in discussing it.The ENT consultant said it was all tied up with PD - so I was left in limbo.
After the first day of halving my madopar dose I was able to sleep on my leftside with no vertigo for the first time in years. However last night as soon as I turned on my left side the vertigo swung in again. So the jury's out.
Hi Pen1. I have been fortunate enough to not have taken any more than a few tablets a day for the 1st 2 years after diagnosis. My neurologst then took me immediately off those levodopa medications and put me onto an MAO-b inhibitor called Eldepryl (Selegiline). That medicction I styed on for the next 8 years, during which I did regular FAST WALKING. After 8 years I was able to come off the Eldepryl and have been off Pd medication ever since. That was 14 years ago.
I think you have to be brave and try finding out how little medication you can survive on. You will probably find it difficult to do any exercise when you are in the 'off' condition. But for those who have tried this, they said it was difficult and they had to consciously plod on, but after about ten minutes it became a lot easier. I have been through a similar situation, after coming off the Eldepryl. But that was not levodopa, but the probem is the same, a lack of dopamine.
You are not encouraged by doctors to do this, maybe with good reason, but if it works then you are far better off. Being not on medication does nothing to speed up the progression of your Pd, it just means that you have to work harder.
Don't be put off by this setback while reducing medication. If your doctor does not want you to do it, then you should not be put off, but be prepared to pick up a lot of flak.
Thank you very much for taking the time to reply to my post. I'm very interested in your expereince and in fact I have your book (and have read it!!). I'm struggling to do as much fast walking as you recommend, partly because I'm lazy and partly because I find that any exercise seems to use up whatever dopamine I have very quickly and within minutes I am a sweaty wreck with acute pain in my back. However, I keep trying and your book is an inspiring read.
I'm now on my third day of halving my madopar and reducing entacapone to 1 rather than 5 a day and still trying to adjust to the odd sensation of not swinging from high to low and back every few hours. It feels curiously flat and I'm very scared that I'll suddenly tip into a deeper 'low' than I've ever been in and won't be able to get out. I'm missing the sudden rushes of motivation that I got from the ups. I think I've read on here of people who stop their medication, feel fine for a few days then crash disastrously and I don't want that to happen. If I'm still ok after a week and can manage a couple of fast walks then I might start to believe I can manage on this lower dose! And I might get used to feeling flat. . .
Before you reduce your meds start a exercise program to works on your entire body. It will strengthen your core and will help with your back pain which is a lot of the time caused by a weak core. You could include fast walking in the exercise program. With all do respect to John walking alone will not help as much as walking and additional exercise combined. The more you exercise the better you feel because you get stronger and it is easier to do your day to day activities.
When i say exercise i mean weight training, aerobic, and stretching at least 3 days a week.
That sounds hard and it is but if you want some thing you have to work for just like every thing else in life. There are no short cuts.
I exercise 5 or 6 day a week and enjoy it a lot. i do Crossfit.
Thank you Bailey for your wise advice. I know you are right and I must up my exercise levels. At the moment I don't think I could run 20 yards let alone 2 miles!
I'm very grateful for all the support and advice I've received since posting my question. I'm now on day 3 and it's been a difficult day. I've been unable to shake off the apathy and have developed a migraine but I'm going to keep going with the new regime unless I hit a really bad 'off' low. I'm so used to knowing that I will have at least two separate hours a day when I'll feel highly motivated it's ridiculously hard knowing that how I feel now is how I'll feel in an hour, two hours . . .Living alone doesn't help I think I need a bit of a kick . . . .
I hope you and frogatt get to meet, buses and trains in UK are so good maybe there will be a way.
I do know what you are describing and have many thoughts. It's possible to get in a cycle of treating symptoms rather than condition but it gets so hard to tell them apart.
I wrote a recent thread called knowledge is power about meds you may find helpful. I can add more re entacopone etc if you want.
Nice to see you again even though things aren't great for you.
Great to hear from you. I've just read your knowledge is power thread - fascinating and very wise. I've had to up my madopar a bit this afternoon as my mood was getting so low. I added a slow release and another dispersible 62.5 and within a hour felt much more motivated and within another half hour was dripping with sweat. It's not going to be easy trying to get the right balance. I have a friend with type 1 diabetes who has a very new type of pump that drips insulin into her - I do wish we could have something similar for parkinsons. I know there is an apomorphine pump but everything I've read and heard about it indicates that it's very crude and there doesn't seem anyone researching a more effective versions.
You mentioned entacapone - I'd love to know more. Having cut out 4 of the 5 I've been taking daily for years I've noticed no difference. Why was I taking it?
Incidentally I fear your view of public transport in the UK - at least in the north- is a touch optimistic. We do see the odd bus - about once a week!!
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