Niggs,

That's not the point I was making about the Stalevo. The point I was trying to make was it's one thing taking the Stalevo, it's another thing getting the levodopa contained in it to the right place. Your symptoms would be explained if the Stalevo was not working. Then, rather than the expected increase in medication, you got a decrease. What could cause this? One possibility is protein in the diet. I note that when taking Stalevo your doses are taken closer to meal times.

John

Hi John

I see your point clearly now. What I was trying to say was that even on the
old undermedicated regime where the total LED was lowest,460,and the effective levodopa was only 300, I was never so extremely Parkinsonian as I was during the stavelo trial, further I am now on a total LED of 540,levodopa 300 and have none of the extreme symptoms.
As stavelo is the same as sinemet + entacapone, but with the levodopa reduced to account for the comt. element then the only situation I can see decreasing the delivered levodopa is if for some reason the comt.inhibitor was not working. Whatever the cause it would have to reduce the delivered levodopa below the 300 mark, as I have a no problelms now with 2 x sinemet cr 200/50 nor did I have before with the same.
The only other possibility came from a pharmacist who suggested that the entacapone caused spikes of levodopa which briefly caused a 'too much' situation or maybe I just don't tolerate entacapone, trials in the past with SSRI's have put me in hospital for example and diazapram has virtually no effect whereas doxylamine,a sedating otc anti-histamine never fails to get me to sleep.
I have a low protein diet and leave a good hour either side of dosage.
Fascinating stuff !
Nigel

Nigel,

Sounds like you have it under control.

If I took too little or too much sinemet my dystonia kicks in big time. Neck, back, head are all very stiff. The catch is too little or too much causes issues. We (MDS & I) got it pretty well controlled by taking 2x 25/100. I was doing this three times a day.

Soon became apparent I was "on" for four hours and "off" for two hours before next dose. Got that settled down by adding comtan to the sinemet. It helped keep me on for six hours.

Not sleeping at night, as I would be stiff and twisting up (hands/feet). So added a forth dose (2 25/100 Sinemet + 200mg comtain) at 10pm. Worked pretty good, but does seam to wear off some nights. So add one tablet 25/100 around 3am as needed.

Slowly my "every six hours" has come down to about 5 hours. So I try to be flexible on what I am doing as I do not want to go over too much.

John... if I read the chart correctly, I'd be around 1040 Levadopa, plus up to 2 additional.... 1240 a day.

Hi Tom,

Based on your input I stuck with it, the Requip xl bit that is,and there are signs now that things are getting better....so cheers mate !
I'm going to keep the stalevo in my back pocket until I see the 'Dark Lord' sorry I mean Neurologist.

Something made me smile today. The weather here is famous for being poor especially 'up north' where even now it's not uncommon for kids to rush indoors and say "dad,dad there's a big shiny yellow ball in't sky" But now the British parliament are considering advising us to take vit D supplements..the weather is so bad we need sunshine pills !!
Hmmm better check their side effects.

Nigel

Nigel,

I had my PCP run a full work blood panel on me, and Vitamin D was low. So I've added 4000 IU Vit D daily. It seems to have helped with cognitive task.

I always love the medical advice:
PWP tend to have low Vitamin D, so spend more time in the sunshine.
PWP tend to have higher incidents of Melanoma (skin cancer) so be sure to stay out of the sun, or use lots of sun block.