Have had PD for over 6 years. Now on Stal... - Cure Parkinson's
Have had PD for over 6 years. Now on Stalevo and Requip XL for tremor. Meds not lasting long. Does anyone know if affected by certain foods.
I have been dx PD for about 11 years. I am also on Stalevo and Requip XL. My symptoms seem to be more movement related and less the tremor. Also found that the effects of the Stalevo tend to fall away quicker now than they did at first(I've been on Stalevo for about 3 years). Originally, I was on 3 per day, then I went up to 4 per day, now I am on 5 per day. They tend to take a while to take effect and then the fall off is quite sudden. Taking the Stalevo every 2.5 hours.
Talked to a PD Nurse last week, she told me that Stalevo do take a while to get going and she has recommended that I take one Sinemet first thing to get moving quickly, then Stalevo the rest of the day. Told me, also, that 5 per day is about half the maximum dose for Stalevo so I have some way to go.
Now, the answer to your question - no, I don't know if symptoms are affected by foods. The only thing my PD Nurse advised was to drink coffee with caffeine but that was connected to my normally low blood pressure, not the PD.
What dose of the Stalevo are you on at present?
Peter
My experience of Stalevo is very similar to yours. I am on 200mg of Stalevo 4 times a day, although I have recently increased this to 5 a day. I am also on6mg of Requit which I take once a day. I can go for quite a while with tablets working fine and then they go off with no warning, sometimes after an hour and then the next dose does not kick in at all. This can go on for quite a few days and thenthings return to normal, with no apparent reason.
I wondered if there way any pattern, but seems not.
Appreciate your comments.
Sue
I am also on Stalevo. My neurologist told me to specifically take them on an empty stomach - either 30-60 min. before I eat or 2 hours after I eat. he said the protein of the food competes with the medication for absorption.
Jupeter/Peter > They tend to take a while to take effect and then the fall off is quite sudden.
Court/Sue > I can go for quite a while with tablets working fine and then they go off with no warning
These remind me of a more general question. It came up a my last PD neurologist visit (and I think in at least one previous appt with him). Sorry, I haven't taken Stalevo, so it's not about that. I take most of my PD meds 3 times a day. One of his Qs to me was whether I can see benefit soon and for a while after each of those 3 times. I told him, no, I feel about the same most of the time.
It's the same with my other meds. Eg, I take 2 Rx meds for sleep. Those don't make me drowsy. They benefit me by generally being in my system these days. The sleep and PD meds do not give me any short-term sensation. He seemed a little surprised by that.
So, the question is, am I unusual in that respect? IOW, do you experience both short term (eg, a few hours) and long-term effect from Rx meds? I know you can't speak for everyone, but I wonder which way most people are. To make that easier, we could restrict that Q to PD Rx meds. Above, Peter & Sue find they need to take more of Stalevo to have the desired effect. But that's somewhat different from whether you distinctly feel each dosage kick-in and start having its effect.
Speaking for myself - yes I feel the medication kicking-in and definitely know when it isn't going to work. Tonight is a prime example. On good days I sometimes forget that I need a tablet. Have just been told I have angina and also diabetes. Wonder whether tablets for angina are not agreeing with PD tablets. What next?
> Have just been told I have angina and also diabetes. Wonder whether tablets for angina are not agreeing with PD tablets. What next?
Yikes! My sympathies -- you've got an unfair number of health problems.
I thought of an exception to my comment above where I say that I don't feel Rx meds kick-in. But, it's a different kind of med, and I don't consider it to be a contradiction to the above. Instead of being an everyday, maintenance med, its the one I take as needed for migraines -- currently Sumatriptan. (Previously, I took Zomig, but that's way more expensive, and both work as well for me.) Since it's as-needed, I'd expect to notice when it's starting to have its effect.
It's important to always take your PD meds on an EMPTY stomach. Food, especially anything high in protein, will absorb the effectiveness of the medication.
And if I feel a dose wearing off too soon, something sugary seems to ease my symptoms. Not recommended if your blood sugar is high.
It is absolutely food/protein related. I've been at a 20mg Requip XL, 200mg stalevo + amantadine level for the last couple of years. I recently dropped the stalevo to 3 (sometimes 4x a day) level by moderating diet times and protein intake. Here's the key. Never even less than and hour before or 2 hours after a meal. Breakfast, lunch should be small and contain as little protein as possible. Eggs, meat and other high proteins are bad news. It's ok to snack and eat more, smaller meals. Be careful with dairy products. In the evening, go ahead and pig out. The protein won't bother you and night. I've become a self taught guru on this stuff. Try to eat fruit, veggies through the day, especially berries (blueberry, blackberry, and other high antioxidants) eat beans and nuts (walnuts, almonds, and pecans) at night. They are high antioxidant, good protein, and good fat combos.
Thanks for this very useful information. I will certainly take notice of your comments. I try to take the Stalevo on an empty stomach. I wondered if the problems may be to do with diet but couldn't find the infornation to support this theory. Starting to wonder if PD getting worse more quickly. Will have to monitor foods as I have recently been diagnosed with diabetes but sure I can do this. Many thanks.
I have one of the top 5 movement disorder neurologists in the world and he didn't tell me about protein inhibiting dopamine uptake. Found out myself through research and PD network of friends. As an unabashed carnivore (LOL) it's been quite a change, but for the better.
Ask your PD nurse to explain his/her coffee recommendation. My doc believes that drinking coffee or cola with meds on an empty stomach helps flush them through the stomach and into the small intestine where they are absorbed.
Not sure whether the effect you refer to is good or bad. Does absorption in small intestine neutralise the drug? Should it be held in the stomach longer to have the proper effect?
The comment re coffee was that it helped to raise BP.
In fact, I drink very little coffee, one mug a day max, so I don't think it has any affect either way.
When should we take the first meds of the day? Like most folk, I think, I have a hot drink (Lift Apple Tea)in the morning before I have breakfast - taking my meds even before that, i.e. when I wake up so in fact they are taken on an empty stomach.
Another problem is that as we get older, we develop other ailments, not just PD. I have Osteo Arthritis, low blood pressure, occasionally mild but at times rapid atrial fibrillation. So, I take Co-Codamol for arthritis, Warfarin to reduce stroke risk from the AF, Fludrocortisone to raise BP, Requip & Stalevo for PD.
Given the above cocktail, how does anyone ever know what is causing which symptom? I am just grateful that they all work!
Of course I'm not a doctor so please talk to yours before your change anything, but my doctor says that PD drugs are absorbed in the small intestine, not in the stomach, which is why he feels they need to be flushed through the stomach by themselves (no food).
Thank you to everyone for your helpful comments. Which I will need to read thoroughly to absorb the details. I will raise relevanr information with my PD nurse and my consultant.
I also was eating better, less protein and more fruits and veggies. I began to feel better.
During the holidays, or when traveling, I seem to get away from this way of eating.
I didn't know for sure that my eating truly effected my PD. Thanks for the confirmation that the way I eat does effect how I feel.
Jag har fått rekommendationen av min neurolog att inte äta 1,5 timme före eller 0,5 timmar efter medicinering. Dricka minst ett glas vatten vid intaget av medicin och att ta medicinen regelbundet. Detta följer jag så noga det bara går och det fungerar bra för mig. Medicinerar med Stalevo 50 mg x 4 och Sifrol depot 2,1 mg x1. Tar medicinen 05.30, 09.30, 13.30 och kl 18.00. Sifrolen tar jag tillsammans med första Stalevon 05.30. Telefonen påminner mig när tiden är inne. Bra hjälpmedel annars lätt att glömma.
Skriver på Svenska - hoppas ni kan översätta.
Hallo I try in English
I have received the recommendation of my neurologist not to eat1.5 hours before or 0.5 hours after medication. Drinking at least one glass of water at the intake of medicine and to take the medication regularly. This I follow as closely as we can and it works well for me. Medication Stalevo 50 mg x 4 and Sifrol depot 2.1 mg x1. Taking medicine 05:30, 09:30, 13:30 and 18:00.SIFROL I take along with first Stalevon 05:30. The phone reminds me when the time comes. Good tool otherwise easy to forget
Thank you for the information and especially the translation. You make me ashamed that I could not translate it myself. The information is very interesting. I do try to keep taking Stalevo on an empty stomach or at least one hour after I have eaten. However, your comment about drinking water is something I will try. I also take meds at regular intervals.
i am on stalevo and requip and have an itchy rash on both ankles any else suffer from this
does anyone suffer from breathing problems when meds wear off.. i would like to know if others have had or have this problem ....please 
