A bit of advice please?


#1

Not sure if this comes under newly diagnosed exactly but I will try and keep it short. My wife was diagnosed January this year, previously having thought for 10 plus years she had M.E./CFS (perhaps she did, we will never know), anyway she was advised to take 2 sinemet, 3 times a day. And all went well for around 4-5 months and she felt the symptoms getting worse. So 2 weeks ago we go to our GP and he doubles the dosage, immediately after a constant twitching not tremor started in her left foot and shoulder, and the symptoms from before have barely eased at all, does anyone think we should go back to the GP or is this just from increasing the dose and it will settle down? Still havent seen the Parkinsons NHS nurse either and not likely too apparently, not enough of them! Can anyone help or advise?


#2

If it was me I would go to my consultant (or P D nurse since I am fortunate to have one) for any queries with my PD meds rather than my GP.


#3

I just wish I could, seems to be no help around.


#4

Hi @WebFreeby,

A warm welcome to the forum.

It’s good to see that you’ve already received come advice from @Tot. I’m really sorry to hear that your wife has been having issues with her medication. I would definitely recommend that she speak to her GP about this so they can review her medication as this sounds a little concerning. It’s a shame that she hasn’t seen her Parkinson’s nurse as yet, however, these things can take some time which isn’t ideal, I’m sure.

If you contact our helpline, one of our friendly advisers can arrange for a Parkinson’s nurse to call you and your wife back within 24 hours. Please feel free to call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

I hope this information helps!

Best wishes,
Reah


#5

I would ask to see the neurologist/ consultant. doubling the dose of Sinemet sounds a bit drastic and not all GPs have enough expeience with these meds… Getting the right dose is not easy . i was diagnosed in January and take one Sinemet plus, three time a day. I have just seen my neurologist and am to continue at the sme rate for another 8 months. However, we are all different, but I do think your wife needs some more help in finding the right dose for her.

Best wishes

Knine

Audrey


#6

Judging by what by what I have read of the experiences of others, I consider myself very fortunate. I see my consultant around October/November and my PD Nurse around April/May and I am able to contact them in between if needed. I know none of that helps you and nobody, whatever their condition, should have to battle just to get a basic service but please keep plugging away and in the meantime hope you find the forum supportive. Lots of people have excellent ideas and tips and may be able to suggest something to help. Good luck.


#7

you should see a neurologist GP should not be increasing you doses, get in touch with a Parkinson’s Nurse.

I am not qualified but have been a carer for nearly 20 years. Good luck


#8

That’s quite a lot to double may be she’s getting side affects to much dopamine you can talk to pduk nurses


#9

Thanks for all of your advice, we got in touch with the PD nurse straight away after diagnosis, but you maybe right about the doubling of the dose. Ive taken it on myself to reduce it slightly and it seems to be working. Hopefully one day we will get a nurse to talk to about it, GP’s seem to be hit and miss, we had a nurse practicioner who said she didnt have Parkinsons, and a week later the consultant said straight off she did so there you go.


#10

My Parkinsons nurse advised increasing the dose of Roprinerole with the Sinimet which allowed you to take a lower dose, reducing the involuntary movements. Also there is a slow release version of Sinimet which might help.
I am forever grateful to have a dedicated PD nurse.


#11

I agree - I feel the GP tends to distant themselves from any queries re P D once they have referred you to Consultant at hospital. I


#12

As I have said before on this forum, the Parkinsons nurses are very very important to the patient when it comes to your medication. When I saw my gp for the first time (many moons ago) he told me there were only 3 patients in the practice with pd. How can any gp recommend drugs if he sees pd patients so infrequently. It is a balancing act at the best of times. I will only alter my drug regime when I feel it needs a boost and then only with my nurses say so. Having said that I appreciate how frustrating it must be never seeing a pd nurse.