Does the strength have to be increased

About Parkinson's and health Newly diagnosed
1

Hi,

My wife was finally diagnosed in late Sept '14 and started Sinemet (12.5 / 50) in November. The drugs had a fantastic effect very quickly. We saw the GP after almost a month. The GP said something about instructions from the consultant to prescribe a stronger dose when the prescription came up for renewal. Understanding that the body gets accustomed to the drug, I suggested that my wife stay on a lower dose and the GP agreed.

Being a worrier (even w/o PD) my wife is concerned that she should be on a higher dosage (and we should simply follow the consultants instructions.)

Is the low strength start normal to see if there are side effects? And is it the case that she should move to a higher strength? Or should she be ok to continue as she is until symptoms return?

We would be interested to hear the experience / advice of others.

Thanks.

2

Hi,

If your wife is fine on her present dose I would say she should stay on that.  I usually find that I have to have my dose increased when symptoms start to return and become troublesome again.  I am no doctor though and just going by personal experience.  I hope this helps.  All the best.

Lexi

3

Hello, Timkford --

I agree wholeheartedly with Lexi Lucas.  My first drug was Mirapex (pramipexole), but a few years ago I added Sinemet at a very low dose.  Like your wife, I responded to it immediately, so my doctor kept me at that level.  It feels good to know that I still have further options if and when my symptoms worsen.

Best wishes,   J

4

 

Hi

i Started on sinemet and then moved over too madopar on 12.5/50 i have gradually moved up in dose from 3  a day too 4 then 8 and now 12 x daily i enquired with the neuro and pd nurse that i wished too have something in reserve and option as J ^ Above says, she assures me i am still on a relatively on a low dose, but the dose has gone up gradually due too the apparent gap in benefit from the medication.

5

As there is no cure for PD, treatment is purely symptomatic, so as long as the low dose is effective in alleviating symptoms,  there is no reason to increase.. What is probably at the back of the consultant's mind is that somewhere they have read that a minimum dose of 70mg/ a day of Carbidopa is necessary to keep the side effects to a minimum. Carbidopa is one of the two ingredients of Sinemet. With three pills of 62,5mg (50 Levodopa + 12,5 Carbidopa) a day you only get a total of 37,5 mg of Carbidopa  a day. I, too started on 3x 62,5mg and did not increase for quite a while, cannot remember exactly how long, but it worked fine and , as the disease progressed I very gradually increased the dose, guided by how I felt, what the effect was on my symptoms.

6

Hi Timkford, that all sounds like consensus. I'd agree - levodopa is an amazing drug and had me skipping like a two-year-old within days of adding it to pramipexole. Not only skipping: thinking straighter, being less tired, much better mood. And all on 12.5/50mg *3 a day. This is considered a starter dose, and my PD nurse prescribed doubling it to the "normal" minimum dose of 25/100mg *3 a day a week later.

But, like Kate says, there's no point in taking more meds than you need to control your symptoms so I stuck with the 12.5/50 starter dose (after checking with the PD nurse, of course) and all seems to be very hunky-dorey. So I'd concur with everyone else - if your wife is content with the symptom control on the lower dose stick with it.

But here's the thing: the thing is, I didn't realise how bad I'd got until I started taking the levodopa and realised how much better that made me. So, listen to the professionals as well your own body - sometimes they know better than you do.

Best wishes to you both

Semele

7

If symptoms are controlled on the present dose why increase the  present medication  until it becomes necessary?

OH was started on Requip, and, within 18 months was on 24mg.per day.It was NOT needed  at that time, just increased with every visit to the neuro who we soon dumped in favour of someone better informed on Parkinsons. Neuro  was  an MS expert which is what our GP thought it was.

8

Katie "As there is no cure for PD..." reads a little better with a "yet" slipped in. Together, we WILL find a way.

Positive mental attitude

9

I'm on 125 sinemet and 14mg requip . Everyone is reluctant to increase due to my age (57) but having off times  when struggle to walk .

does anyone out there work shifts with pd ? Would be great to hear how you got on and managed meds? I'm doing nights and 12hr days but can only manage 1day at a time . Just trying diff no of nights in row , finding juggling of tablets a problem . 

Thanks

 

10

Thanks to everyone who responded. My wife was recently 56 by the  way.

She complained about not being right throughout 2013 and finally reacted to my 'go to the Drs' pleas and went in Aug '13 - to be fair her symptoms weren't clear. He said - these things happen to woman her age (she was 54) and she had a blood test and that was it.

She more or less had a breakdown, collapsing at work in Dec 13. It was Sept before she was diagnosed and that really upset her.

Wishing the best for everyone - and as we seem to hear about cures for all something new each week, let's hope a cure for P. is found soon.

Thanks again.

Tim

11

Hi all, we all start on a low dose as PD works in stages 1 to 5, 1 generally being the start of PD & 5 being advanced PD, the meds will change if a low does is working then stay as you are. 

You only need to increase if the current meds are not giving the PWP the required level of protection.

BB X

12

Thanks BB. I knew it gradually got worse. I didn't know there were defined stages. I'll read up about that.

13

Hello everyone,

I have been reading all the post, I was the same as your wife Timkford (Tim) I hadn't felt well for a few years, lost a stone in weight in 4weeks & just felt unwell. I saw my gp & due to my health history (which I won't go into) I was sent for colonoscopies, endoscopies, scans bloood test you name it! I am still being moinitered today because of the weight loss etc. But it all came to a head last year in June, just like your wife Tim it came to breaking point with me. I eventually saw a nuro Consultant on xmas eve & was told straight away what it was after doing some test with him. I was totally shocked if honest. I knew something was wrong, & if honest did think RIGHT at the back of my mind it could be something to do with my nervous system, but just didn't want to go there!

I was prescribed 1 50mg Madapar aday for a week, then following week 2 then 3. I have noticed my walking is slightly better. I'm not getting strange looks as if i've had one too many sherry's! Lol. Or getting told off when walking & straying off into someone's pathway whose in a hurry (as everyone is today!) & wants to pass me. I have been on the 3tabs now since seeing the Consultant xmas eve.

Last week I went & had an MRI then next day met my pd nurse for the first time. I have to say it went rather differently then I expected. & the impression I got after seeing the Consultant & chatting to the lovely nurse who comforted me on that horrid xmas eve that I would be seeing the nurse quiet regular & be very supported. But after my visit last week with her & being given lots of leaflets etc. & being told about a support group which is far to far away for me to attend, so no luck there! I have felt all a bit unsure of the support network. I can call her anytime so that is very helpful I guess. My next appointment with her is July! I must admit the visit also went differently from how I expected & I think she did too! (My son was with me thank goodness). she asked me what the Consultant had said to me on the day I was seen. I started to tell her about him asking about my health history, etc then did some test then just told me what I had. She replied what did he say Rita. I then said he told me what it was, yes she said but what did he say it was rita! this went on once or twice more, until she made me say the words, & oh dear what's wrong with me as I just broke down totally! & spent the rest of the time crying, more like sobbing. & ever since last thursday its the same, slightest thing & i'm crying. Is this normal, has anyone else been like this!?

My tablets like you have all been saying have now been increased. This morning I had to take 2 of the Madapar at breakfast & for the rest of the week then next week introduce 2 lunchtime for a week then the following week 2of an evening . I should by the end of the next 3weeks be on 6aday. She did tell me if the nausea & side effects are too bad I can take my time with the increase. Is all this normal?

I don't know if its me in denial about everything going on with me, but I have no tremors as such, just the odd one of an evening whilst lying down in my upper arm. My symptons are really bad weakness in my right arm & especially hand. I find it so hard to grip or hold things. This really frustrates me as I use to be able to fly through my housework & then garden or paint. Now it take ages, & I get so tired so quickly. & as said before am so tearful all the time & just low.

I had an unpleasant mole removed from this arm 3years ago & I keep thinking did they cut into my muscle too much!? Then 2years ago I had five tears repaired in my shoulder, same arm again!. Did they repair it right or has it torn again, I ask myself would this be what effected my balance & not walking well. Would this be what's causing the weakness!! Are they right about my diagnoise! But then I think what about the general feeling of just being unwell, & getting confused. & i've noticed a problem even when eating & swallowing is hard!!? So am I just still in shock & have I not accepted my diagnoise yet? Obviously you can't all say I know but its just good for me to talk to all of you who I feel will understand me. Even though i've met my nurse I feel lost with it all. Support groups are good if your able to attend them & it doesn't seem like I will see the nurse often. So you lovely people are my support right now.

I don't seem to see that many people on Madapar eitheir? Is it a good drug or is it one that is normally given when you are first diagnoised? One comfort is I have been told my Consultant is a specialist in pd, so that is reassuring.

Well after all what I have said, & no idea if i've made sence as my head is a little fuzzy this morning & taking the 2 Madapar do I feel nausea! Oh yes!. Thank you for reading this, & I wish your wife Timkin well, I am the same as her a worrier at the best of time. Wishing you all on here a good day & week ahead. & hoping your all coping as well as you can.

Autumn Leaves.

PS big thank you to bb she is a lovely support. I just wish I could work out still how to use this site. I must be stupid! I use to be a PA would you believe, & self taught myself the computer, yet can I understand this site no! It said the other day I had 1 new notification, could I find it no!! I kept clicking onto the notice but no couldn' see any new notifications. So if anyone wants to contact me it may have to be by private message! All take care. & I will give myself a good kick up the rear & try try to stop being so emotional & cry so easily. It hasn't been easy to type this as I am private, (i've said before & am embarrassed & its just not me to say how upset I keep feeling, but I need to say it to someone, & I feel I can this site, whoever gets to see it that is!)

14

hi autumn leaves

dont be so hard on yourself, youre having normal reaction, it takes time to get use to this diagnosis and to accept it. i was diagnosed sept and had same reaction ... tears tears and more tears! .but as meds started to work and got to right levels started to feel so much better.some days feel like nothing wrong with me . unfortunately doesnt last !!!! im on sinemet which is same levodopa but with different drug to ensure crosses into brain . i was given domperidone to combat nausea while your body gets use to the levodopa. would be worth asking GP for some . made big difference . think it took about 4 - 5 months before started feeling better and able to talk to people about it without crying but now able to talk to anyone who'll listen !  im back at work full time although am tired and have to schedule in lazy days .

hope this helps

 

15

Hi AutumnLeaves

The thing about PD is that there's no "right" way to behave with it or about it. Kittens3 is right - you don't have t obe hard on yourself, you don't have to be upset at being upset, you're allowed t ofeel frustrated about things you can't do. I did all of that, and swore a lot, too!

Take your time, let the drugs work, persevere till you're on the right dose for you - not too much, not too little. And you should be feeling better. In denial is a good tactic, too if it helps. But one reasonable dx of PD is that you feel better when you take anti-PD drugs. One bit of me did kind of think I can't have PD, I've got hardly any symptoms . . . then I took the drugs, then I felt more better than I'd felt bad (if you see what I mean). and because I was feeling better I didn't need to feel in denial. What a strange world it is.

Take care, and best wishes

Semele

16

 

Hi autumn leaves

Yes i have had nausea and yes it does pass although as above my pd nurse offered me a prescription as above, if i so wished, and yes i've felt dead tired and tired very easily at times, i too have felt weak,I'm am a strapping lad or was but it made me as weak as a lamb,

I have had walking problems too and my gait and posture is going too be looked with and by a physio. and yes i get a little confused mentally and i have found it at times hard too concentrate and achieve the simplest of things at times and in order.

I used too rush about in work and in home life, but  i have gained and am slowly getting  a little of that back with the medication on 'madopar', but i still know i have limits which i wish too improve apon. i try too treat the days now as a marathon rather than as i used too as a sprint and not expect too much, just yet at least.

Your not alone.

 

 

17

Hi AutumnLeaves & everyone (& Thanks again for the responses that hopefully help others)

My wife was tearful for ages with the P symptoms and from getting the diagnosis until she was on meds.

What I keep hearing & reading is how P affects people differently and how the effectiveness of the meds varies.

My wife was on 3 tablets a day from the off.

Today we saw a different consultant (someone on the neuro-pharmaceutical side i think) who said a number of times that my wife ought to be on (to quote Semele) 'the normal minimum dose of 100'.

With the choice between going with my logic and the advice from this forum - and the specialist - my wife went with the specialist. So, she will double tablets until she has used up her prescription and then go onto the 'normal minimum'.

Thankfully, she didn't get nausea with the starter dose - i hope that continues.

I'm sure the strength and quantity of your meds will be sorted AutumnLeaves and then your P symptoms will improve (or disappear)

Best wishes

Tim

18

Autumn Leaves, I sent you a personal message and am not sure if you received it.

J