Delayed treatment

About Parkinson's and health Treatments and therapies
1

I have been diagnosed with PD in April of this year. The neurologist suggested starting on Sinemet low dosage increasing to 125 mg  three times a day if I become slowed. Currently coping with resting hand tremor and bradykinesia hence decided to delay treatment however for the last few weeks I have been experiencing a tight feeling below my ribcage. GP uttered the word "hernia" but no investigation requested just continue with Lansoprazol which I was taking whilst I was on Naproxen for painful hip which has been resolved following Steroid injection. Naproxien has been stopped since.

As I have a big family event in September I do not want to experience side effects. Has anybody been in this kind of situation as if so I would appreciate comments.

2

Purdy

It is a hard choice to start meds I found, like a big psychological hurdle to leap, admission that i really have PD, all those sort of things.  It can be quite a relief to get past that obstacle and start treatment.  There will always be something that will be in the way of starting too!  

As to sinimet, most people tolerate it very well.  I have never had any problems with it.  The best way is to start slow and increase at your own pace.  Is your sore hip on your affected side?  When you do finally take sinimet i bet you'll find the hip pain goes as well, will be interested to hear.  Mine did.  

As to tight feeling under rib cage, ive had that in the past and quite a few of my PD friends too.  Could be many causes, mine was to do with the gut working very slow. Sinimet could resolve it.   (Domperidone as well helped me)

Hope you have an enjoyable family gathering in September.

 

3

Hi Hikoi

Thanks for your most reassuring reply/comments.  After 3 months of observing my symptoms which appear to be stable and if any, perhaps slightly better since taking Coenzyme  Q10 100 mg twice a day, I have decided to  start on Sinemet next week when I get my prescription.  I'm hoping that it will give me some boost for the big event in September.  There again, it may not.  But without trying, I won't know.

My painful hip was on the unaffected side.  Pleased to say, the pain responded to U/S guided steroid injection. Previously, I was on Naproxen for almost 8 months with little effect and due to some side effects, I also had to take Lansoprazol, both now discontinued.  Incidentally, I read an article stating that Naproxen can exacerbate PD.  My GP wasn't aware of it and admitted he is not an expert so I tend to liaise with the specialist nurse as my next appointment with the neurologist is next February.

Since stopping the Lansoprazole, the tight feeling under my rib cage has abated.  Occasionally, my left ankle feels numb and heavy.  Do you get this sensation?

I was told to take the tablets at 08:00 and 20:00 hrs initially then increase to 08:00, 14:00 and 20:00 hrs.  Any tips on this regarding food to avoid or take tablet before or after food would be much appreciated.

4

Definitely take sinemet before food as a full stomach slows down the absoprtion of the drug.  Protein seems to be the worst, but I also watch my carb intake too.  Do you have problems at night?  If not I would take the 8 am dose and then the second dose perhaps 3-4 pm to make your waking hours the best quality.  After taking sinemet for 20 years I now take 62.5 mg tablets seven a day and a slow release tablet at night.  LIttle and often has worked best for me and it helps avoid dyskinesias (involuntary movement).  However we are all different.

5

 Sally, I have only just started taking the 1st dose of Sinemet 62.5 mg at 08:00 hrs and had breakfast 40 minutes later.  I'll be on this twice a day for the 1st week,  3 times a day for the 2nd week and then increase it to 125 mg 3 times a day thereafter.  

I may find eating the evening meal at 20:30 hrs or thereafter a bit late, but will have to wait and see how I get on this next few days.

 

6

If you eat between 6 & 7 pm, you should be OK to take tablet at 8 pm, as long as you don't eat a really heavy meal.  Good luck!

7

Thanks, may have to try that sometime.  For the 14:00 hrs dose, would you also advise eating between 12 & 1 PM?

8

Yes, I would.  However a lot of it is experimental.  Don't be afraid to do what you think may work best rather than be too guided by your neuro.  You may find taking tablets before you eat is best at the end of the day.  We are all different!

9

As has already been said, we are all slightly different so don't be afraid to experiment to find what works for you. But some general guidelines:

1. Eating a lot of protein within 20/30 minutes of taking Levadopa should be avoided as protein can weaken its effect.

2. Taking Levadopa on an empty stomach isn't recommended either so many people take a biscuit or banana or some such snack with their tablets.

3. Levadopa can cause nausea - this is fairly common when first starting or when increasing the dose, but usually subsides as the body gets used to it. Domperidone can be taken to reduce nausea, but should not be taken forever, just the first few weeks, then taper the dose down and stop.

Levadopa will reduce your Parkinson's symptoms - timing is important but generally less so in the early days.

Good Luck!

AndrewJohn

 

 

10

I'm still on my 1st week of 62.5 mg twice a day.  I have been taking the tablet at 08:00 and 20:00 on an empty stomach followed by a meal 30 - 40 minutes later.  So far, no nausea nor vomiting but feeling light headed, sleepy and left foot heavy and numb at times.  Next week, I'll be taking same dose at 08:00, 14:00 and 20:00.  Any suggestion what to do when going out to restaurants for lunch (12-2pm) or dinner ((7-8pm) please?

If Domperidone is needed, do you take it with Sinemet at the same time?

 

11

Personally, I'd take tablet before your restaurant meal whatever the timing.  You want to be medicated enough to enjoy the outing!  Personally I don't worry about the empty stomach bit and the risk of feeling a little sick as long as I get the effect of the tablet!  However, I have never felt sick with sinemet and have been known to swig it with a glass of pre-dinner wine!  Naughty?  Probably!  But I want to be in charge rather than allow the PD to totally control me!

However, it is very early days for you and not everybody responds well to levadopa.  For me it is a miracle drug and has been for many years.  That's not to say life is easy, but parts of each day can still be quality.

12

Hi Sally

I note that you have 20 years experience of using Sinemet and I wondered if you could elaborate on how you have managed your PD effectively during this period.

I think it would be very useful and encouraging to others to see that levadopa therapy is not the end of the line and that with careful management potential side effects can be reduced or avoided.

I myself have taken sinemet since 2006 and like yourself I have found it very effective provided the timings and food intake are taken into consideration. I started on 3 x sinemet plus daily and now take 5 x 150mg stalevo.

What drug regime did you start on and what is your current regime?

How did you find out about timings etc?

Have you experienced any of the side effects? If so how did  you deal with them?

 

regards

Leyther

13

HI Leyther

Sorry I've been a bit haphazzard and impersonal with my answers!  I need to read questions properly!  I also used to spend a lot of time on this forum and although it's excellent, it can become a bit addictive and end up not being helpful!!  Yep you do sound a lot like me.  I take sinemet (62.5) 7 x daily and a CR (100/25) form at night.  Please remind me what stavelo is? I began on a half sinemt plus 3 x daily so equivalent dose of the little 62.5's I am now on.  Little and often has always been my motto.  This was based on a book I got years ago after reading an article in the Daily Telegraph.  It was about a heart surgeon in USA who developed PD.  His theory with medication was 'drug holidays'.  He only medicated when he had something to do.  Obviously he was no longer operating, but he was still giving talks for example.  He did this from square one, so that's what I decided to do.  Albeit I was further down the line with PD and needed the doses just to allow me to maintain an OK life.  So most days I have off periods which I just put up with!  I know in this day and age of high expectation and perfection, a lot of people may not want to put up with this.  I believe though, it has given me longevity with sinemet (still the best and oldest drug for PD, I believe).

Main side effect when medics insisted I try and up doses were terrible dyskinesias, writhing in my seat until a came off the chair.  Uncontrolled leg movements where I'd end up with terrible bruising on my legs from trying to stop it by wrapping my legs around table legs, chair legs, my legs!!!  No good!  However, decrease sinemet, reintroduce my on/off way of medicating and it's rare that I have a dyskinetic spell.

I am currently trying to focus more on my skeleton because now I am middle-aged, the wear and tear of the PD is showing.  Like you, chronic back pain, slight arthritis and terrible stiffness and cramps, particularly over night and in the mornings.  I am now much more diligent with stretching exercises (try to do a few three times a day).  I'm also going to see a pilates instructor to help me improve my posture and stregthen my stomach muscles, to help support my back.  I am generally fit, as I have short walks with my dog each day.   I keep slim so I don't put any unnecessary extra stress on my skeleton.

I have cut out wheat and this has helped with constipation.  I eat quite a lot of nuts for breakfast and have a salad with a generous glug of olive oil at lunchtime.  I think the oil lubricates my bowel!  Food intake and sinemet is always a problem and if you're not careful you can end up eating nothing!  Again for me, it is about endurance and not perfection.  I do need a decent meal with protein and a small amount of carbs each day.  For me it is always a bit hit and miss.  I can't always fathom when a meal is going to interfere with the absorption of sinemet.  However, I always medicate about half an hour before eating.  But because I need to medicate about an hour and a half after eating, I sometimes don't get a good response!  Hey ho! Life ain't perfect!

I'm waffling now.  Tell me if there's anything I've missed.

Kind regards, Sally

14

Very good answer Sally and a lot of good information for PWPs

Stalevo is Sinemet plus and Entacapone combined (FYI I recently had none available and took the components separately and found they worked better; faster response and on time. Its the same with CR drugs "improved" for convenience only!)

The spreading out of levodopa seems to avoid the dyskinesia except when entacapone is added and 150mg levodopa (1 and 1/2 sinemet plus) seems to be the threshold beyond which dyskinesia occurs.  . Thats my personal conclusion from what I have come across.

Keeping expectations in perspective is a good point; you cant get perfection but you can have a reasonable standard of living if you manage the medication.

Muscular problems; yes we are all getting older and tend to blame PD rather than age related problems.

 

How I manage my day:

I tend to take pills when I need them based on an arbitrary regime ie if I am scheduled a pill at 5pm and I feel I am wearing off at 4pm I take it early.  If I am having a long or busy day I take an extra one. I look for reasons why I have a problem eg lack of sleep, gut problems, illness, stress non pd meds etc. I then decide on the best course of action, if there is none that works then I accept that, rest up and start again when I feel better. Forcing a situation causes stress, our worst enemy.

Also, if I find a pill is not working I take either caffeine (very strong coffee with sugar or red bull type drink                 ) or I eat something (chocolate works well) and rest. Generally this brings me on within 15 mins.  Rule of thumb; eat on an empty stomach, caffeine on a full one. There is science behind this if you care to look it up related to gastric emptying.

I dont do any special diets or supplements (although it would do me no harm to eat better) I dont do regular exercise as such I get enough from lugging my fishing tackle between bank and car.

I dont believe in the "we are all unique" philosophy with the exception of gender and allergies we are all the same. What differs is our circumstance and lifestyle which can be changed. A lot of people give up at the first difficulty with their pills instead of looking for a way around the problem, often encouraged by over stretched neuro teams. Adding another pill is easier than solving the problem.

Levodopa works but you have to work with it too. You have to constantly be aware of what your body is telling you and adapt to its needs, you also have to educate yourself and this tends to be from the pd community. The rider always check with your doctor is often pointless as most are here because their doctor cant help them.

20 years on Sinemet without any serious side effects gives me hope for the future, thanks Sally!

 

Leyther

 

 

 

 

15

The 150mg threshold with regard to levodopa causing dyskinesia relates to a single dose not the daily dose which may be much greater.

16

I agree with Leyther's views on managing meds and approach to dealing with problems.

Patients and Parkinsons nurses usually find a way of medicating and juggling food problems associated with gastric emptying and doctors usually admit PWP and nurses know more than they do!

The only thing I would add is that  dispersible Madopar taken when a quick boost is needed helped enormously...suggested by the Parkinson's nurse and prescribed when requested without question by our lovely GP.

This has made life much easier when out and about...e.g leaving a restaurant, cinema or finishing a supermarket shop...

We have experimented at the consultant's suggestion and found meds every 2 hours prevent "off " periods.

The message is...take control, work out what works for you...don't rely on doctors too completely.

Listen, as Leyther says, to your body and be prepared to change meds , timing etc as the condition moves slowly along.

That vaccine is on its way and the nightmare will be over, I am convinced!

Love

GG

 

 

17

I've found this very interesting . A couple of months ago my nurse suggested doubling my Sinemet from 62.5 x 4 to Sinemet plus x 4, to help with fatigue.  Since then I've felt worse, had feelings of edginess, can't  sleep, and experiencing severe wearing off, none of which I've ever had before. I had  been wondering about the dose whether it was too big a jump.

Maybe I might be better on  smaller dose more often.  After 14 months I've finally got an appointment with a neuro next week so will suggest this.

 

 

18

I have posted this before but perhaps it merits re- posting.

Our consultant said he believed in working out dose and timings in a faffy but effective way.

In a nutshell, you take the tablets nearer and nearer together, about  15 mins knocked off gap  in week 1, then 30 mins week 2 etc until you are "on" all time and no "off periods.

You can fine tune by reducing 5 mins by week 3 if you are still waiting to get to optimum period.

Then you begin lowering dose in same way. Getting lower dose tabs and using a pill cutter.

Keep going until the dose begins to not have the optimum effect.

All this took weeks but eventually my husband stabilised on a much lower dose every 2 hours.

The Madopar dispersible boost when necessary was added some time later to deal with exceptional circumstances when  usual routine was affected by extra food or stress, such as being in crowds that caused shuffling etc.

It was time-consuming for a number of weeks keeping records of times, doses , effects etc but well -worth it in the end!

I do hope this is of use to you as it is hard to get good advice and doctors all have their own way of doing things.

We had  a consultant for many years who caused dreadful damage and it was wonderful to find such a talented replacement.

Unfortunately he has moved to a new area.

His patients are lucky and we feel he offered us a new, much - improved life!

Good Luck!

GG

 

 

19

Thanks for this GG,  I'm going to try the "little but often" approach. It seems  more sensible to try and keep a steady amount of medication rather than peaks and troughs that I'm having now.

My consultant has himself been sick for the last 18 months or so, and no cover has been in place, hence having gone so long without seeing anyone. I believe that a replacement has now been appointed,  It will be interesting to see who we get, I just hope he/she is a movement disorder specialist.

 

20

Hi G.G

 

Manyhanks for your post.  I have started having  sllght  diskinesias which are related to when I  take my Sinemet but have not come across any systematic way of adjusting the dosage/timing to suit the individual.  I do  know people vary in how fast they reach peak levels and how fast they go down but apart from that, no amount of googling has led me to the practical steps you have passed on.   I have so far reacted very straightforwardly to the Azilect and Sinemat I am on so in theory it should not be too hard to reach the optimum regime instead of  just tinkering in a haphazard way.