Hi, Can anyone tell me a little about Sinemet please? My husband has started on them only 4 days ago, on the box it says he can take 1 to 4 daily but he was told to start only with one the first day then 2 for a few days then to 3 after another few days??? all at bit hit and miss really.
Its only very early days as i say, but the reason i ask is because i notice his tremor is occuring more, although no way near as frantic, very mild be a lot more often?? is this the meds kicking in? how long before there might be more improvement?
My husband has been given Sinemet by his GP as he has all the symptoms of PD but he has to wait till mid April for his first appointment with a specialist, so I gather his meds will be discussed then?
What I can't understand is his GP is treating him for PD yet that does not mean he has been diagnosed, I am worried sick that it might not just be PD. Will he be diagnosed on seeing the specialist? or is that not the way it works? I was trying to sort out travel insurance, they say that he can't be covered if he travels for PD as a pre existing illness be cause he has not yet been diagnosed???? I told them his GP was treating him for PD, but they said no, he has not been diagnosed and thats that, anyone any advice, experience regards the Sinemet and/or the travel insurance, I would be extremely grateful, thanks a million love holsx
Hi, My GP started me on madopar last May,I believe madopar and sinemet are similar,had to increase them gradually to 3 a day,was told if symptoms improved it likely would be parkinsons,I have no tremor,my main symptom was rigidity,especially my legs,could not believe the difference was able to get up from a seat easily.
I was pretty sure I had parkinsons and said this to my GP.I saw the neurologist in August,she did say it was unusual for a GP to prescribe until a diagnosis but agreed it was very likely Parkinsons but sent me for a DAT SCAN and was not confirmed until November,she then increased my medication slightly.
Hope this helps you and your husband.
Regarding your holiday insurance. Find another firm . If you P M me I will let you know our insurance company,who only charge about £30 extra for annual travel insurance. There are lots of companies that will cover you but the amount varies. Of course,age comes into it as well.
I would not like our G. P to be responsible for prescribing for Parkinson's. G.Ps are just that, general practitioners. They have a small amount of knowledge about a lot of things. In my opinion, they just do not have enough knowledge to deal with Parkinson's effectively for every individual. If you can afford it, consider hurrying up the process of diagnosis by going private. It cost us £200 but that was nine years ago. Best money we ever spent as GP was really messing things up with beta blockers, then epileptic pills because he thought John had Essential Tremor. At least your GP is referring you, ours said it was not necessary!!!
In my husband's case, but not everyone's the medication ,has had little effect on the tremor.
I have annual travel insurance through our bank account,I am 71 and notified them I had parkinsons,gave them details of the medication,I am also on 2 other medications for other illnesses which they are aware of,said they had taken a note of the parkinsons and would not have to pay anything extra for cover,I am going to Portugal in May,so was pleased at this,realise this might change as the illness progresses.
Thanks to you all for your help and advice, it is greatly appreciated. My husband is such a dam stick in the mud, I wish he would go private but he won't, I wish he would let me try and bring the neurologist appointment to be sooner, but he won't. He has been asleep most of the day just keeps dropping off, each time i try to approach the subject he goes raving mad at me, and the tremors get worse, and he blames me. I think! or should I say I know, he keeps putting things off because he is thinking he has something worse then PD just hope to god he hasn't. After how many days on Sinemet do you think he should feel some benefit? I will try and get him to go on to 3 tablets today fingers crossed, thanks everyone love Hols x
HI,Once I was on 3 Madopar a day,I knew a difference in a week,hope you get an appointment soon.
When the Gp diagnosed my husband he referred him to a consultant . It took about 6 weeks . but the Gp didn't prescribe .

The consultant agreed that he thought it Parkinsons and started him on a low dose Sinemet. x three daily we saw him again 4 months later .

In my husband s case even though the dose has increased I haven't seen any real improvement but each case is very different and I have learned not to compare with others because each case is so very ver y different .

When you go to see the consultant take with you a list of all the things you want to ask him however small . He won't mind because you won't waste his or your time which is precious .
Hi Johnnie, Thanks for your advice, do you mind if I ask you a few questions please?
When you say your GP did not prescribe for you, how did you carry on with no help for another 6 weeks? Also when you seen the Neurologist you say he started you with 3 sinemet daily was this because he had diagnosed you as having PD? Did you not have to have any tests prior to the diagnosis for PD? so you were just left with these meds for 4 months without any other follow up? I am trying to find out what will happen on my husbands first appointment with the neurologist? will he diagnose PD on that visit? will tests definateley be needed? did they make that appointment with you that day to come back in 4 months? hope you don't mind the interagation, love hols x
Hi Hollytree, welcome to the world of Parkinson's. I think most of us can relate to your experiences in respect of waiting and being left feeling helpless and anxious. I have had pd for 11 years now and I went private for my first visit to the neruo, who dx me there and then.I decieded to go private because there was a 7 month wait to see an NHS neuro, I got my 'private' visit within a week and gues what...I saw the very same neuro that I would have waited 7 months to see on the NHS!!! Outragous but true I'm afraid.

I would be very dubious about a GP precribing for pd without advice from a neuro, as there are many other conditions which cause shaking. Perhaps you might speed the process up by going private, it costs about £200 and once you have that dx you can then ask your consultant to see your hubby on the NHS.

Im afraid that the NHS system isn't great where PD is concerned and you can find yourself feeling very lonley and confused. This is where the forum comes into it's will alwaays find answers and support here and if you are still confused or need answers you can always ring the phone lines.

I do hope that things get sorted our for you and your hubby soon

There are no real tests for Parkinson's except for a Dat scan when the consultant is not positive about the diagnosis but that is rarely used. When you get to the consultant I expect your husband will be asked to walk up and down,then asked to pinch his fingers one at a time to his thumb. He may be asked to write something and sometimes the consultant will warn him and then try to pull him backwards to see how good his balance is. The consultant will then write to your G.P recommending the appropriate drugs. The visit in four months is just to review how your husband is doing and adjust medication if necessary. If you are lucky you will have a Parkinson's nurse in your area who will be able to answer any worries ask your G.P . Otherwise why not phone the help line on this site.
Hollytree29 . it was three years after he first questioned the Gp about whether he thought he might have someting like Parkinsons . at the time I was worried that he might have a tumour or had had a small stroke . , his face was drooping to one side along with his shoulder .

husband struggled along with great difficulty at the same my mother had a very big stroke and we were .going back and fore to the hospital and eventually a nursing hOme she lived for three years not an easy time for either .her or us .

It was during the week she died that the Gp eventually said he was referring him to see a consultant formParkinsons .
We continued waiting forbid weeks

When we saw the consultant he came out of his office watched my husband rise from his chair and then asked him to walk back and fore in the waiting room . I his office he asked afrw questions , felt his arm and asked him to touch his nose , and then draw a continuing circle . it was then he told him he had Parkinsons and gave him the Sinemet and said he would send for him on 4 months time ..

At that time I didn't know about any of these site , didn't even have a laptop . It was then I decided to get one and learned how to search the web .

It has been a godsend , if anything was on my mind I would google it . The smallest thing was answered .
Hi Hollytree
try not to get too worried especially about timing. You have been referred to a specialist and the guidelines say you should be seen within six weeks but if not then you have every right to remind them of the guidelines and ask for an immediate appointment.

Others have told you how we get diagnosed, on symptoms as there is no definitive test. The DAT scan is useful especially when things are unclear but is generally no more accurate than symptom diagnosis so you may not be sent for one.

Although GPs generally don't prescribe until you have seen a specialist yours may have been concerned about your husbands symptoms affecting his quality of life now. On the plus side he will have had a few weeks on medication to report to the neuro. Especially useful as you plan a trip. I think the GP was confident of his diagnosis and if your husband responds to the medication that will confirm it. There is nothing that is likely to be harmful about all this in fact quite the opposite, you have got things moving and not had to sit around waiting until April.

As to insurance cover, if they do not accept it as a pre existing illness isnt that positive? You have told them the situation and so your husband is covered i would have thought and at no extra cost.

As others have told you people on the help line on PUK are very helpful if you are concerned about anything. Also the PUK publications are very good. I know it is all very concerning at first but after a while you will notice that getting treatment sorted is a slow process.
Thank you so much Johnnie, and the rest of you for all your helpful advice, I don't know where I would be without all your help. You have had a real bad period Johnnie dealing with so much grief, but you seem to just soldier on. I have my brother in law (husbands brother) he is mentally handicapped we took him in when he lost his Mum 15 years ago, its a hard job taking care of him. So I am hoping to get my husband to go private, don't fancy waiting another 8 weeks, even if he has a PD specialist see him and check his meds to get him on the right track, and then perhaps go back to the NHS service. Its hard enough without all the waiting
You all take care, I hope you all get a restful nights sleep, god bless love hols x
Hi Hollytree,

The official NHS !NICE" guidelines clearly state that if Parkinaona ia auapected the patient the should be referred to a neurologist who (and here I paraphrase!!) who knows what he/she is doing and can interpret the symptoms. It is a clinical diagnosis and often the neuro will give Sinemet and if the patient's symptoms are alleviated this can help to clinch the diagnosis when other things have been ruled out.
I was given sinemet and the dosage was increased slowly from one to three over the course of three weeks. I should ring your doctor and double-check what they said. Perhaps, the fact that your husband has left it so long, and the symptoms are classic ones (?)and quite debilitating is why your GP has been tempted to try the sinemet but I would emphasise that most PD drugs are introduced (and weaned off) gradually. As regards how long sinemet takes to have an effect if your husband has lost muscle strength, for example this will not improve overnight although he will be better able to do exercise which will achieve improvement. He might feel better in himself though I suppose - everyone's differs in how exactly they respond to PD meds. It might reassure you to know that Levadopa (the main ingredient in Sinemet) is alsoused to treat various other conditions.

My worst symptom was tremor in my right arm and leg and I was lucky that the Sinemet helped a great deal with that although it does not help everyone's tremor. However, I was very fit when I received my diagnosis bombshell so I assume that's why I felt so well a few weeks after starting the medication

Have you rung the helpline above? Its a free call number

Best wishes
Hollytree29. We just had to get on with things until we saw the consultant . Yhe GP didn't give him any Parkinsons medication .

The only test the consultant did was to watch my husband rise off the chair he was sitting on to walk onto his office . He then asked him to walk up and down the waiting room . caught hold of his arm to feel how rigid it was then asked him to draw a never ending circle . Starting at the centre and getting bigger and bigger . also asked him to touch his finger and then his nose . .

That's when he said yes you do have Parkonsons , have him the Sinemet x three daily and said he would receive another appt in about 4months which we did and generally continue to have . Unfortunately the Consultant we have been seeing and has got use to us recently retired and they haven't replaced him yet other than one of his assistant doctors .

We have never ever seen a Parkonsons nurse . appently they are very helpful .

Wish I had know about this site when we first started . it was while we were in the waiting that I picked up a leaflet about Parkinsons that I found it and went out and bought a laptop so that I could google anything that came to mind . Good luck
Hi, I need some advice and hope some of you are able to tell me of your experiences with Madopar. My husband was dx Sept 2012 and put on Requip xl, during the titration he had flu like symptoms and although he saw some improvement, the symptoms seem to be returning, the main problem being movement.
He has just seen the neuro who has added Madopar 62.5mg he has to take this 3 times a day and the Requip at night, the madapar increases to 125mg after 7 days. So far he is worse than ever, walking causes pain, he is drowsy and sleeping during the day and has a headache.
The neuro said that the Madapor should improve his quality of life, when is it usual to feel any improvement, is it weeks or months? or is it possible that this Madapor isn't going to do the trick? Next appointment with neuro is in 6 months time. Any comments would be appreciated.
Your husbands drug regime mirrors mine, starting with Requip and adding Madopar. There are so many variables that it is not easy to answer your question but my experience was that my pain improved and I didn't get a headache. As to being drowsy - that's a constant state! For me I think it is the Requip.

I just have a few thoughts, which I will write and hope they may be of some use. Headaches sometimes mean we need fluids so your husband could try increasing his water intake.
It is interesting that the requip is at night, usually requip XL is given in the morning so its main effect is felt during the day. Some people do however take it at night. Has your husband just changed from taking it in the day to taking it at night because that will also affect him and his stiffness until his body has adapted. It may also affect his sleep pattern making him sleepy during the day.

There is no rush to increase medication according to your specialists schedule, I have always increased slowly allowing my body to get used to the drug. Your husband is still early in diagnosis terms and I have noticed that it takes many people around a year to get settled on their medication.

Give things time and take it slowly is my suggestion and ring the helpline anytime for support and information if worried.
Thank you for your comments Hikoi, the Requip Xl has always been taken at night
as the neuro instructed, maybe this is because my o/h has a lot of pain and found it difficult to sleep, and to turn over in bed without pain.

As you say it is early days and it is still hard to come to terms with the diagnosis, as the one who doesn't have PD it is frustrating that I can't help him.

I take on board the point on fluids and will try to get him to drink more water, the headaches seem to be one of the things that depresses him.

As you say everyone's experience is different, can I ask if you personally have noticed any improvement in the quality of your life since taking madapor with the Requip XL.
As you say everyone's experience is different, can I ask if you personally have noticed any improvement in the quality of your life since taking madapor with the Requip XL.

I guess you know we have lost over 80% of our dopamine production by the time we are diagnosed. Its odd but after diagnosis it feels like our symptoms accelerate for a while. Maybe its just that we have passed a threshold where before we barely noticed symptoms to them becoming very noticeable. Certainly since diagnosis unfortunately I have found symptoms have continued to become more and more noticeable.

As to drug treatment, yes I certainly found madopar improved everything, Requip was never my favourite. It helped but was not as effective as madopar. Madopar or Sinemet both contain L-Dopa and are the gold standard treatment for Parkinsons. Madopar only lasts 4 hours while the requip XL works in the background giving long term cover.

I have been diagnosed 4 1/2 years. i am now on 14mg Requip and 4 x 100/25 Madopar. I am tremor dominant. Have you looked at the drug treatment of Parkinsons booklet available free here. I found it very useful. Do hope things settle down for you both.