Back on meds: I've always had difficulty... - Cure Parkinson's

Cure Parkinson's

25,477 members26,798 posts

Back on meds

kaypeeoh profile image
14 Replies

I've always had difficulty believing I had PD. So 5 weeks ago I stopped taking Rytary. During the 5 weeks I had periods that led me to think I was having withdrawal symptoms. It's only been two days back on the meds but so far nothing much happening.

Along with Rytary I've been taking Linzess, a new constipation medicine. I take the pill at 8AM and around 11AM I'm rewarded with a large, semisolid BM. The neuro didn't want to use LInzess but insurance won't cover anything else. After 3 months if I'm not happy with it the insurance company will allow her to prescribe something else.

So recently the neuro noticed lower-limb pitting edema. I noticed swollen thighs. I used a measuring tape that shows my left leg is 17 inches in circumference at the calf and mid-humeral thigh. My right leg is 15 inches at the same spots. Along with the swelling I can't bend at the knee in my left leg. It's painless and more a case of stiffness than numbness. My right leg seems more normal.

The exam showed I weigh 210#. I wonder how much of the weight gain is fluid making my thighs soggy. She recommended compression socks but I haven't found any yet.

Written by
kaypeeoh profile image
kaypeeoh
To view profiles and participate in discussions please or .
Read more about...
14 Replies
MBAnderson profile image
MBAnderson

How tall are you and what is your BMI?

kaypeeoh profile image
kaypeeoh in reply to MBAnderson

5' 6" and 210# Google says that's a BMI of 34 and puts me in the obese category.

LAJ12345 profile image
LAJ12345

we find alternating a beans /lentils /chickpea day with a meat day helps with the old BM problem. It acts as a bit of a bottle brush!

Why did you start the meds again? Did the symptoms worsen? Or just the constipation?

Do you walk much?

kaypeeoh profile image
kaypeeoh in reply to LAJ12345

As I mentioned, I didn't believe I had PD. I didn't have any of the common signs: No stiffness or slow moving or balance problems. Or loss of taste/smell. That bothered me the most. Weight loss is a common sign. But believe it's caused by the loss of taste. I experienced that years ago when I was prescribed an eyedrop medication that, as a side effect, ruined my sense of taste. During my birthday I ordered a slice of German Chocolate cake--my favorite--and had to spit it out to prevent vomiting it out.

But recently I found stiffness and swelling in my left leg. It's not painful. It almost seems like the weight gain is impeding function of my knee.

I was a long-distance runner for 40 years. I'd done over 50 marathons and several-dozen ultras. I kinda thought that might have protected me from developing PD. Or as least lessened its severity if I did catch it. One sign I do seem to have is constipation. That's why I wanted to try Linzess. I tried other medications but found I couldn't "hit the sweet spot".

kaypeeoh profile image
kaypeeoh in reply to kaypeeoh

Meaning I'd have constipation requiring enemas for relief or I'd have liquid stools that hit without warning.

LAJ12345 profile image
LAJ12345 in reply to kaypeeoh

but you are taking rytary again? So does that mean you now believe you do have PD?

I guess I’m wondering if you are still able to do walking and have you tried diet for constipation instead of a drug? Hubby has found by eliminating meat every second day and reducing dairy eg cheese his constipation has stayed away. We actually think it was caused by too much levodopa when they fiddled with his dose.

He lost weight quickly on this diet although he also now avoids all sugar and gluten too. He went from over 100kg to 76kg in 6 months then stabilised about 4 years ago.

my hwp has found taking Magnesium capsules helps .. 1 / day for sure, sometimes more.

We have a foot vibrator -Amazon- that helps when my ankles swell. Also keeping my feet elevated whenever possible. He can’t use it because he has blood clots.

like this one: Amazon

Foot Muscle Massager Machine-Electric Foot Massage Deep Relax Muscle Massage Foot Pain Relief for Foot/Sole/Calf, 30 Speed Vibrate with Remote Control&...

Raphaekg profile image
Raphaekg

Umm....do you exercise? It's free medicine for PD! Start at whatever intensity you can, walking with the long-term goal of running. Aerobic exercise appears to slow PD progression.

kaypeeoh profile image
kaypeeoh in reply to Raphaekg

I have a treadmill. I'd prefer to be outside walking or jogging but didn't want to risk a bout of diarrhea in public. Like I said, these attacks came without warning. So I walk on the treadmill which is just a few steps from the toilet. I ran out of Linzess and am waiting for a refill or whatever else the doc recommends.

Frankieh profile image
Frankieh

My daughter has May Thurner. Many doctors have never heard of it but her left leg would swell but she also experienced pain and it sounds like you aren’t Just wanted to pass this along.

faybo39495 profile image
faybo39495

wondering why neurologist didn't want you to take linzess?

kaypeeoh profile image
kaypeeoh in reply to faybo39495

I've got so many docs I can't keep them straight. I think a gastroenterologist prescribed the Linzess.

Fb41445 profile image
Fb41445

I’ve discovered Walgreens brand or CVS Gentle Laxative Suppositories work for my constipation. It advertises it works in 15 minutes to an hour and it definitely does. The Overnights take too long.

ParlePark profile image
ParlePark

here’s an over the counter remedy that has taken me from daily constipation to 0.. Yerba organic ok psyllium. Daily. Cost me bout 8.00 USD a month. Consumerlabs gives it a top pick for me it works 100% after 1 month approx stopped using squatty potty!

I use 1 tablespoon with 12 oz water. And drink water through out the day. This is after trying, miralax, citrucell, Metamucil, everything. I’m 100 regular. Look into Yerba.com.

You may also like...

Increasing salt intake and meds

salt intake, using margarita mix and a salted rim, along with a little extra salt ingested. He...

Normal Meds: is this it?!

‘normal meds’ work?! When I take a single Madopar (100/25), it can take an hour at times to feel...

PD meds daily schedule

symptoms begin to worsen, instead of accepting the neuro's advice to increase dosages, I began...

Meds not working well again

My PD husband and has been taking 4 or 5 sinemet 50/250 CR for about a year and started using...

Stopping meds

deteriorate after stopping L-Dopa? I stopped Rytary 9 days ago. I've had two mild bouts of...