Anyone else taking Ongentys?

[Isthistheone]

For the past 6-8 months my levodopa has not been doing the job. My dosage was one 50/200 mg Sinemet ER (Extended Release) and one 25/100 CR (Continuous Release) every three hours. I also was taking two Selegiline 5 mg daily.

I was wearing off in 2 hours. If i waited till my next 3 hour dosing time, it would take another hour to kick in. I was reaching the point where I was off more than on. I started to ask questions, because you really are in despair. Then the topper hit - When i wore off it was pretty much instantaneous and no warning.

A perfect time for Ongentys to arrive, just FDA approved in April this year. I'm the first patient my Neuro prescribed for. First the positives:

1. Very easily do 3 + hours between doses.

2. I cut down my dose from 300 to 200 mg.

3. Don't know if this will last but I'm getting much better sleep. Some nights skipping Sinemet.

4. Said good by to sudden off periods.

Now for the negatives. Dizzyness, dry mouth, constipation, increased dyskenesia, low blood pressure. There are more.

My dyskenesia levels were up there before I started Ongentys, were higher after I started. Dyskenesia has peaked and is on the way down.

I have orthostatic hypotension and Ongentys can be flagged for piling on. Keeping well hydrated and lightly saĺt your food was my neurons advice.

Ongentys isn't for everyone, and like the rest of what we take, has unpleasant side effects. Also just branded, no generic.

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[park_bear]

Orthostatic hypotension (loss of blood pressure upon standing) is a failure or impairment of the postural blood pressure regulation system. This leads to the average (averaged between lying down and standing) blood pressure being too low during the day, when we are usually sitting or standing, and too high during the night when we are lying down. There is also a slow blood pressure regulation system that tries to compensate. This leads to the average blood pressure rising during the day and peaking at bed time when we lie down. The result is excessive blood pressure upon lying down, known as supine hypertension.

For anyone with orthostatic hypotension it is essential to have a blood pressure cuff and measure your blood pressure at this time. When I suffered a bout of orthostatic hypotension my systolic was over 200 upon lying down in the evening. To compensate I slept reclining with my head elevated instead of lying flat.

The other thing I did was to chug 1 quart of isotonic saline first thing upon arising, when the average blood pressure is at its lowest ebb. Isotonic saline is made by adding 8 grams of salt to 1 quart of water, or 9 g to 1 L. That raises the blood volume and they therefore increases blood pressure. Plain water does not work because the kidneys will excrete it rapidly.

[Isthistheone in reply to park_bear]

Not one Dr has told me that! I have a good blood pressure monitor. I'll start using it tonight. Never had high BP. Back in the day I was a runner and a swimmer. Not a runner more a fast walker. Swimming I could do. My swim team would have 2+ miles done before 0730. Hydration is so important. We drink less fluids the older we get. Poor hydration is a set up for orthostatic hypotension also called postural hypotension. Thanks for the scoop PB.

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[park_bear in reply to Isthistheone]

I will be interested in what you find.

I too have not had high blood pressure, neither before my bout with orthostatic hypotension, nor since recovery.

The association between supine hypertension and orthostatic hypotension is well known, for example:

ahajournals.org/doi/full/10...

[Isthistheone in reply to park_bear]

I'll take your word for it PB. That is some pretty heavy reading! Give me a couple weeks and I'll let you know. Give me longer. We are closing on a new house. Ranch style no stairs except to the basement.