ARE YOU A NON TREMOR DOMINANT PD PATIENT WITH DYSKINESIA? IF SO, PLEASE HELP.

[OREOLU]

Hi, your suggestions would help a lot. I am beginning to have dyskinesia more frequently. Mostly worse at night. I take Rytary 3pills 145mg, (8am,12noon,4pm and 8pm). My MDS thinks it is motor fluctuations, caused by uneven plasma level of Levodopa. He suggested that I should add two more pills, as a last dose, with adjustment of schedule i.e(8am,12noon,3pm,7pm and 11pm), since I am experiencing more of a wearing off dyskinesia. He previously recommended Inbrija inhaler, but this seem to prolong the duration of the dyskinesia. He hasn't thought of Amantadine yet. He also does not think reducing the medication would help. What have you tried to alleviate your dyskinesia? I am YOPD patient.

Your replies would be appreciated.

[johntPM]

I think the first step is to see if you are experiencing tremors, levodopa induced dyskinesia, or wearing off dyskinesia. You may want to keep a diary for a week showing the times of the doses, meal times and the description of the symptoms and their times.

I notice that your total levodopa equivalent daily dose is 4 x 145 x 0.7 ~= 400 mg levodopa. This is not high (unless you are a small person). On rereading your post you may mean 3 pills at each of 4 times. That would give you a 1200 mg LEDD. This is on the high side (unless you're a big person).

Even with Rytary there will be ups and downs in levodopa plasma concentrations. Your levels will be lowest at the time that you take the first dose of the day. Each succeeding dose starts from a slightly higher base than the previous one. Thus, the maximum is likely to be at about 10 pm.

[OREOLU in reply to johntPM]

Hi johnPM

You are on point with your calculation. I will try and take note of the sometimes mixed symptoms of motor fluctuations. I will then discuss with my MDS during my next appointment.

[jujulini]

I go to bed about 9:00 pm, but take my last dose of c/l at 6:00 pm. Perhaps your 11:00 dose is too late and unnecessary. Also, I take Amantadine 100 mg at 7:00 am and noon. It helps alot with the dyskinesias, and I dont have any side effects from it. I also am non-tremor dominant and young onset. (see my profile)

[OREOLU in reply to jujulini]

Thanks jujulini.

[Cagey84]

Amantadine works well for me, 100mg at 8.30 and 12.30. Scope to add a third dose when I need it in the future.

[OREOLU in reply to Cagey84]

Hi Cagey84

Thanks for your insight.

[jrg54321]

I am non tremor dominant and have mild dyskinesia. I have been taking a scoop of psyllium husk with each dose which has been helping. Those was recent post on the idea on this site.

[jrg54321 in reply to jrg54321]

healthunlocked.com/cure-par...

[OREOLU in reply to jrg54321]

Hi, what is psyllium husk ?

[jrg54321 in reply to OREOLU]

Brand name is Metamucil in the US. It's a plant based dietary fiber.

[pdpatient in reply to OREOLU]

Oreolu, in the United States, you can get Metamucil which is Psyllium Husk or Isabgol.

It is a potent bulk forming laxative and recently observed to have positive impact on the symptoms of Parkinson’s. My experience is also positive with the addition of Metamucil in my regimen. However, I stumbled across the beneficial effects of Metamucil accidentally.

m.timesofindia.com/life-sty...

Hope this helps.

RKM

[OREOLU in reply to pdpatient]

I will check the Metamucil out. I guess it helps with constipation. I don't have much of a problem with constipation though. I take prune juice, peach fruit and magnesium.

[Joanne_Joyce in reply to jrg54321]

I just saw this post and am very interested because I want to try to see if psyllium husk will help relieve my dyskinesia. Please, how much do you take with each dose? Do you mix up a enough for the day in advance of do you mix a fresh amount each time. You posted 6 months ago. Is it still helping?

[jrg54321 in reply to Joanne_Joyce]

I use a teaspoon of psyllium in a glass of water each time I take a cl pill. I take three pills a day. The recommended daily dosage of psyllium is 3.5 teaspoons, so it works out pretty well.

[LeharLover62 in reply to jrg54321]

if you add psyllium husk, make sure you are upping your water/liquid intake or it will cause problems.

[PDGal4]

Not a doctor, but your Rytary doses sound too close too me, especially on the new amended schedule. My neurologist has told me Rytary has immediate release of levodopa, then another 2 hours later, and the last 2 hours after that. He has cautioned me to try to time dosages over 4 hours apart, that is 4.5 hours vs. 4 hours. 3 hours seems way too short to me. I also agree if you are taking 3 x 145 mg each time, that is a lot of levodopa.

I take (2 x 95 mg) Rytary at 7.00, 11.30, 4.00, and 9.00, give or take 20 minutes or so depending on the day. The morning dose lasts the shortest, but none lasts the full 4.5 hours, so I do take 1/2 C/L as a rescue med (chew it)/dopamine boost when I feel the Rytary wearing off. Not perfect, meds are still unpredictable, some days working better and lasting longer than others. I've opted for this as opposed to more expensive rescue meds. The only advantage I see is that they kick in faster (10 minutes vs. 20 or so for chewed C/L).

I do have some dyskinesia, sometimes worse than others, but liveable. As I recently posted, usually when I am overall still but using my hands, like typing or driving. I try to move around to expel their energy.

I also question why your doctor doesn't think less meds will help especially since Inbrija increased dyskinesia for you. Have personally avoided Amantadine and Gocovri -- time released Amantadine--don't like the idea of taking meds to counter effects of other meds. Also non-tremor dominant.

[OREOLU in reply to PDGal4]

Hi PDGal4

I will be seeing my MDS in 2months time, so I will be able to discuss better with him instead of phone talk. Thanks for your input.

[OREOLU in reply to PDGal4]

Hi PDGal4,

In the mornings, if after your first dose of Rytary, doesn't kick in, do you take half c/l? If so like how many minutes after your first Rytary dose? Or do you take half c/l, before you take Rytary in the mornings?

[PDGal4]

Hi OREOLU,I take 1/2 C/L around 4.00-5.00 am, whenever I wake up to use the bathroom, to prevent dystonia in my foot. I give the Rytary 7.00 a.m. dose, and all doses, 90 minutes to kick in before supplementing. My morning dose usually starts to kick in 20-30 minutes after taking, I attribute to coffee and empty stomach. I try not to take 1/2 C/L before 2 hours into Rytary dose, unless I am super desperate (Like have to be somewhere). Otherwise the C/L peaks as the timed Rytary dose kicks in, stacking your meds. I also don't take the 1/2 C/L right before Rytary or I find I am overdosed.

Note this is all trial and error over a few years time and if not thought the best treatment by my neurologist/MDS, at least approved by him as it's my preference. I would not play around without talking to your doctor about and having him aware of what you're up to.

Having said that, what did your MDS say at your appointment?