Medication not working


#1
Hi - I was d/x 2 years ago and am now on 2 tablets x 4 times a day of Sinemet plus and 3.15 mg Pramipexole daily none of which seem to be working.

I have now been prescribed entacapone to take alongside the Sinemet. I am worried that it all seems very excessive to be producing little effect and wonder if anyone else has been successful when introducing Entacapone.

#2
Hi Keygirl

First symptoms 2005, Sinemet trial October 2006 by neurologist 2 tabs (100/25)
3x daily. Confirmed diagnosis Idiopathic Parkinsons Disease 16 April 2008 at
which time Sinemet reduced to 1 1/2 tabs because of uncontrolled movements.
Amantadine (100mg daily) added to help with uncontrolled movements 11
September 2008. Meds working well. 17 October 2011 Neuro prescribed: Sinemet 100/25) @ 5am, 9am, 1pm, 5pm. Entacapone (200mg) 1 tab with each sinemet dose. Amatadine: (100 mg) @ 9am, 1 SinemetCR (slow release) at bedtime. Remain on this regime at the moment. Have found that entacapone does enhance the performance of Sinemet as expected by neuro.


I am trying to keep to this regime for as long as I can. I had no problems adding Entacapone to the mix. In my experience each 4 hours between meds can be affected by all kinds of things eg. what and when you ate, how tired you are, how much exercise you've had, your mood,other medication for other medical problems ( a Biggy!) And sometimes you just feel like c**p for no reson whatsoever. :rolling_eyes: I can also have 4 seasons in one day when each 4 hours can be completely different than the last. Oh what fun! Remember though that each person is different. ( You will hear that repeated often) Life with PD can be full of surprises!:grin:

Good luck on your PD journey

Toots

#3
Hi Tootsie

Interested to read about your meds. Do you know if Entacapone is known as anything else and what is it supposed to do alongside Sinemet? I'm still trying after 6 years to get meds that really work for me.

King regards

Powrie

#4
Hi Powrie
Entacapone is also known as Comtess - put simply (I only know simple!) it helps the body absorb the sinemet.

#5
entacapone stops something called COMPT from converting the levadopa before it gets to the brain. its main side effect is tummy problems.

#6
Thanks to Shaken but not stirred & Turnip (love the names!!) for explaining what Entacapone is.

Regards

Powrie

#7
Thank you all for your interesting and informative replies.
I am currently taking one tablet of entacapone a day increasing to four over the next four weeks so will keep positive that this will have the desired effect.
Best wishes to you all and thanks again.

#8
Hi Keygirl, what are the symptoms (and how serious are they) that the drugs don't seem to touch? How old are you? Why continue with drugs that have no effect? After all that's what you take them for. It is a question of trial, error and patience to find something that works for you. PD cannot be cured by the drugs, they only help alleviate the symptoms. Are you taking the Sinemet on an empty stomach, or at least well away from a meal? (recommended)
Entacapone slows down the release of levodopa, thereby lengthening the effect of the levodopa drug you're taking. The Levodopa drug on its own is quick acting and of short duration. Stalevo is another drug that is given for the same purpose, it is a three in one drug: levodopa, carbidopa and entacapone in one tablet form.

#9
Interested to read from some sufferers that their medication isnt working. My partner was diagnosed 5 yrs ago . He's now 75. We're told at the hospital here that they will Tinker/adjust his drugs and we'll see a new man....this isnt happening. He has days when he's not too bad, but that can change within minutes making it difficult to plan anything. He has distonia in his feet, involving the curling under of his toes, which makes walking impossible.
We asked to see a surgeon with a view to perhaps having the surgical brain intervention, but the surgeon says he isnt "Bad enough" to be considered for this proceedure. We have since learned that they dont usually operate on anyone over 70.
Nowhere do I see any discussion about the possible benefits of foods or supplements in our diet....is there anything out there which might be beneficial?
I'm 24/7 carer and frankly worn out, any of you in the same position will know what I'm talking about.
Would be interested to get some feed back on the diet issue
JOHN

#10
Hi kate and thanks for your response. At the risk of boring you, the symptoms are - left hand and arm have very little movement; right hand now following suit; movement very slow, handwriting non-existent; constant tiredness and cramps in left leg, foot and hand.
I am 68 and d/x 2 years ago although, as almost everyone says, have had symptoms far longer.
I know there are people far worse off its just so frustrating. However I have been blessed with a caring family including two beautiful grandchildren who I see every day so its not too hard to remain optimistic.
Best wishes

#11
Hello, I am fairly new to the forum and need some advice re my o/h who has been taking RequipXL 8mg for approx 10 weeks now, the main side effect is headaches which don't seem to respond to painkillers. The Requip seemed to improve his symptoms for about 5 days when he upped the dose from 6mg to 8mg, but now although there has been some improvement eg he seems to have recovered some strength in his arms and hands, his back pain, shuffling, etc seem to be returning. The question is this, are we expecting too much to soon, he upped the dose to 10mg but this resulted in hallucinations and made him quite ill, so he is back on 8mg but they don't seem to be making much improvement to his condition.
Reading many of the postings on the forum I realise that a lot of members are on much more medication and maybe he is under medicated, I would appreciate any advise any of you can offer. We see the neuro again on Feb 13th and hope he can answer some of these questions, but I would appreciate advice from the forum as you all seem to have a great deal of experience.

#12
jentay

I would leave the medication well alone until you have seen the consultant.

Requip, in our experiemce, has to be increased or decreased gradually.

#13
PS

Medication is sometimes not absorbed as well if the person is constipated, the latter being a common problem in PwP.

#14
I dont think enough attention is paid to the foods that interact with the parkinson drugs......with simminet I think its effect can be affected by high protien foods and with requip I think its high fat.... might have that the wrong way around.. I am trying to watch and record what my ex eats and when and how he is after but this is difficult as we are not living together I only know what foods he has for his meals as I ring him and what we have bought on the weekly shop..... I am convinced that there is some contradictions with certain foods and these drugs.... they are relatively new drugs really and the medical profession are learning themselves.....

#15
Foods that interact with PD - does anyone know for sure what foods we should eat and what foods we should avoid ? Has anyone been referred to a dietitian ? Really interested in this topic so would welcome feedback.

Regards

Powrie

#16
levadopa wants an empty healthy duodenum to dissolve in.
timing - between meals, especially high protein meals
speed - Benji is right - constipation stops absorption. warm water, dried fruit etc

requip slow release and levadopa slow release are not supposed to be affected by food.

#17
AGREE ! There are a lot of factors which affect absorption into the body / brain that you get very brief advise on.
I still get good and bad times after taking medication. My regime is
take medication an hour before / after meals
get timing right - think this is an individual / tablet strength function
i try and take first of the day 1 hour before I get up - only positive I can say for insomnia

And an unset stomach is bad news, whilst v & d are disastrous as medication does not have a chance. And you are in great condition to describe when you fill out your DLA form.
Other problems are :
traveling by plane / time zones. I try and keep time spacing the same but that does not always works
unexpected food - try and say no if you are offered protein at pill time. I don't and suffer soon afterwards

ttfn
westby

#18

have had a real ding dong with meds these past few weeks. Have been on sinemet and sinemet plus 3x a day and requipXL 8 mg once a day for about 3 years.

at my regular consultation, neurologist prescribed me sinemet, sinemet plus, and entacapone 3 x a day, all in the same tablet, despite fact that i was not too bad. Requip dropped.

started to feel a little dodgy,asked parkinsons nurse, she talked to neurologist who claimed he had prescribed entacapone as an extra, so requip reinstated. So now taking the Sinemet and entacapone, and requip

could all of this affected my judgment? I only ask because I was involved in a road traffic accident last week and wrote off my car. I am bruised and cut, but basically OK.


#19

Hi All,I have`nt been on the forum for some time but as I know I get to the moaning stage PLEASE let me know as i am trying to keep smiling. I was Dx.  about 5 or 6 years ago I also have COPD.Last year my health in general went downhill,I used to go to a Parkinsons group nice people trips out ect I also enjoyed friends and family visits.Then for some reason I don`t know but my medication was changed-- I was on Madpar 3 times a day plus inhalers ant meds for COPD.I thought I was doing quite well ,although my Right hand and leg was getting shakey.I went on Entacapone which made no difference at all THEN i went on Stalevo I am a different person!!  I do not get out much only to go for appointments really I ache allover my joints just feel tensed,I feel nauseous all the time even though I take omeprazole daily my PD nurse advised Domperidone TDS as well my GP Agreed but I still felt nauseous and losing weight ..GP arranged for me to see a dietician who told me what I should eat but I can only eat a little or I feel ill, I have also seen a speech therapist who gave me some thickener to put in my drinks ?? and a spray as when I get nervous I do not make saliva.Last week GP stopped Domperidone and gave me  some gaviscon ??? I have lost 4 & 1/2 stone in 5 months and still losing Blood tests normal,whahoo I don`t think anyone knows what to do next I have a disgusting taste in my mouth all the time and hubby tells me i`m snappy and obsess over anything I have another app with GP next week and PD Nurse the week after but everyone says do not worry just try and realax. eat drink and sleep when I want to,WELL i did say i moan a lot but I AM NOT READY TO GIVE UP just turned midnight doing my best to relax listening to classic FM. AND I feel better for using the computer again .i am going to bed now perchance to sleep but tomorrow I am starting my fight back Thanks to anyone who may read this as i felt i needed  to write down how i feel.wink SOOP X

 


#20

Hello, soop --

This is just a thought, and it may not relate to your case, but I'll offer it anyway.  Early in my days of PD, before I had a diagnosis, I went through something similar to what you describe.  I had no appetite, could eat only very small amounts if anything, felt nauseated by food.  It turned out that one of my first signs of PD was gastroparesis.  My stomach was operating so slowly that I always felt full and had no appetite.  It was Domperidone that worked for me, starting with 40 mg. per day and gradually working down to 10 mg. a day, which is my current dosage.  I have tried going without it; I'm okay for several days, then nausea begins again.  If you haven't been tested for gastroparesis, you might ask your doctor if he/she thinks it's a possibility in your case.

I wish you well.  Best regards,

J