I need help coping !

[123leelee]

New member here...having trouble with feet and ankles swelling up. Pharmacists says it's the mess, I on carbodopa/levodopa 25/100 and amantadine. Getting severe anxiety over this. As it's getting worse. I was diagnosed last year at 54 y/o. I'm having trouble coping with this......

[Bailey_Texas]

Hello 123leelee

You are not alone

Please read this it appears that it is the amantadine that is most likely causing your problem.

Please Call your Doctor or go to the er.

drugs.com/cdi/amantadine.html

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); aggression; agitation; confusion; depression; fainting; fast or irregular heartbeat; fever; hallucinations; memory loss; mental or mood changes; muscle problems (eg, spasms, uncontrolled movements); paranoid thoughts; personality changes; seizures; severe or persistent drowsiness or trouble sleeping; shortness of breath; sore throat; swelling of hands, legs, feet, or ankles; thoughts of suicide; trouble urinating; unusual anxiety or irritability; vision changes.

[123leelee in reply to Bailey_Texas]

Thank you for your reply. The pharmacy said it could be either one, as they both could swell the legs. I hope it's the amantadine cause I need the levodopa. I tried pramipexole but it got me so dizzy could take it. I went to ER and they didn't know what was causing the edema and theneuro,obits said its not from PD , she should have known it's from the pills!, (sp?)

[Bailey_Texas in reply to 123leelee]

Ask your DR. how to reduce and stop the amantadine and see if the swelling goes away.

Good luck

[123leelee]

Yes I will, thank you! Anyone else have swelling of feet on any medications for PD?

[laglag in reply to 123leelee]

Hi. I don't have swelling but a friend did & it was the Amantadine. But as Bailey said, Talk to your doctor before changing anything. Hope you feel better soon.

[ramondo4 in reply to 123leelee]

I am on the same sinemet dose as you ( 3 times daily) nothing else though, no swelling in either feet but unbearable pain in left ankle ( most affected PD side ) when walking. anyone else get this ?.

[Peaches in reply to ramondo4]

I have been having severe pain in right knee which just so happens to be my PD side. Going into my 7th week now and all the Dr. can say is that it's an arthritis flare up. I have pain with every step on that foot and for the last week have had a lot of swelling of the foot. Seems so strange that you can be fine one day and can't walk across the room the next morning.!?? Had a Cortizone injection but so far no improvement. Has anyone else had a similar experience?

[123leelee in reply to Peaches]

After exercising lately I wake up very early in the morning with severe pain in both knees had previous minor surgeries on the news but I guess the PD makes the pain worse

[Peaches in reply to 123leelee]

Sorry to hear that. I have total empathy for you. It is such a crazy way to live not knowing if your next step will hurt or not. Thanks for your reply. It is always nice to "talk" to someone else who knows what you are going through.

[paddyfields]

In all my internet trawling I have never come across sinemet having this effect.

Since using Rogotine (neuropatches) I get oedema in the ankles from time to time and certainly some PD meds have this effect.

[pangyo]

Don't worry be Happy!

Ask your GP to deal with your water detention on your feet. It will take time to get rid of the swelling feet.

Is your Parkinson under control? Meaning your PD symptoms isn't obvious while you're on the medicine!

Getting some one to help you to talk and relax your mode may help also.

Let me know if you think you can not handle the situation.

Cheers

[123leelee in reply to pangyo]

I recently moved to a different state in the USA and I am seeking a new therapist. Although I'm very happy with where we are living now I find myself constantly dwelling on the situation of having this disease and it's making me very anxious and very depressed. And the anxiety is making all the symptoms worse I'm stuck in a vicious cycle it appears that no one ever gets better from this day just got worse and all I do is wonder about how much worse it's going to get that makes my Tremors worse

[Beckey in reply to 123leelee]

Leelee, I felt EXACTLY the same until I started Rock Steady Boxing. It has a terrific record so far of dramatically slowing the progression of our symptoms. It was started by an Indiana attorney a few years after he was diagnosed with PD when he was only 40. The high-energy workouts boosted his physical health, agility and daily functioning beyond his expectations -- and in a short time. I never thought I would be at ease in a boxing gym but it has helped me so much. The coaches are really dear. Plus, you can't beat the camaraderie! RSB is in many states and increasingly in other countries as well.

Visit rocksteadyboxing.org if you are interested in learning more or finding a class near you.

I also do yoga in the evenings and that not only brings me physical relief but also relieves my anxiety and boosts my mood and sense of well-being. There are some good guides on Youtube.

Let me know if this is helpful at all. I'll be thinking of you.

[Bailey_Texas in reply to 123leelee]

PWP do improve I was bad 18 months a go..I could hardly walk a half mile. I suffuled 'had slow gait,tired easy,no arm swing, unable to cut a piece of meat,and could barely feed myself. I started exercising and started taking C/L and today i run miles have too much energy, hard to set still but have to too damn hot to go outside. I am better today than when i was DX 11 years ago.

[123leelee in reply to Bailey_Texas]

Thank you. My problem now is severe knee pain in both knees and right foot dystopia, so I'm limited. I loved to walk but with foot cramp can only walk 2 blocks. I do yoga.

[Bailey_Texas in reply to 123leelee]

Good morning

Is your dystopia med related?

I know how you feel i went though every emotion a person can have. I have had all types of side effects some took me to the ER.

I did not get relief from most till my 9th year with PD. You are young and early years with pd. Take advantage of every thing this world offers you. If you get to work on your pd you can do much better. i am not against or have a no opinion on supplements i just don't use them if the work for some one that is great.

Find a DR. that will work with you and try all meds in diffriant combos. There must be a regiment that will help you. As for as exercise it comes in many forms from just keep moving around the house is great setting around just makes it worse. When you are idle you fixate on your pd. Exercise is the key to controlling your pd.

As for your knee pain try to find what is the cause. If you can find some knee exercise do them it will loosen them up. The more flexable you get them the better they will feel.

Don't let a fear of side effects worry you they are only temp and are not that bad. I only went to the er because i did not know what they where today i would just ride them out as i do today.

Good luck and keep asking questions

Bailey

[123leelee in reply to Bailey_Texas]

Thank u

[Boyce3600 in reply to pangyo]

You asked if symptoms are under control i.e. are not obvious while on meds. In general as related to PD ..are you speaking of motor symptoms, because there are so many other symptoms that creep up like the anxiety I read so much about, as well as depression at times, slowed speech and foggy thinking. Diagnosed 2 months ago and so many things to deal with. I follow the posts that talk about supplements and meds in addition to Sinemet. I know it is trial and error, that each person is different and that it takes much time. As with most meds and even some supplements I believe, one symptom might be helped but another or two are caused. I don't know which way to turn first.

[ancee]

I took amantadine breifly, my legs both turned red and blotchy and swollen. I'd guess that might be the problem.

[Palmarloop]

One thing you could try is to elevate the legs. When I have swollen ankles I sleep with my feet on a pile of cushions. My symptoms are not as severe as yours are, but it always seeem to work.

All best wishes.

[Trixiedee]

It is definitely the amantidine. I'd stop taking it.

[123leelee]

Thank you all, I think it's the amantadine too, we will see!

[123leelee]

I didn't take any amantadine today and my legs are not as swollen as they were yesterday.

[Hikoi]

Leelee

It is likely to be the Amantadine and I have a friend who got very anxious when using it and the anxiety stopped when she stopped the med. don't know anyone else it has affected like that. I use it and don't have any problems. Out of interest I wonder how often and at what times you were told to take it. (It can interfere with your sleep.)

some people get mottled purplish skin from Amantadine. It's not harmful but looks unattractive.

I used to get swollen ankles from Requip but after a few months that settled down and no problem now. Similar to paddyfields experience.

The question is why are you taking Amantadine and are swollen ankles worth any good effects you get from the drug or not. Probably not for you at this time.

Anxiety is also part of PD so if it continues despite stopping Amantadine you may need something, best to talk to your doctor.

[123leelee in reply to Hikoi]

The amantadine didn't cause constipation but the Cynbalta did! Ty

[123leelee]

Thank you for your reply . My neurosis the added it to the levodopa saying it would make me feel even better. I did get the red rash, but found a reduction in my right arm tremor. When I saw a specialist in PD she said I don't know why he put you in that. So took me off it and added cymbalta, as she saw my anxiety was the driving force of my P D symptoms , which I agree is true. However the month I was on it I was extremely constipated, despite weekly acupuncture . So we stopped it. Now that problem is gone. Today I went all day without amantadine, and when I'd get nervous my arm would shake bad. Dr says I'm eventually going to have to go on the mirapex , but it made me do dizzy and nauseous. I'll call her tomorrow. My legs are not so swollen today!

[123leelee]

Btw, I took it three times a day . I find the only thing that works is Xanax and I get no side effects from it. Plus acuputure is a God send . I'm fortunate to have found special acuputurists

[Pureann]

I had some of the same issues while taking Requip. I had swollen calves, ankles and feet, as well as a red rash. Went to primary Doctor twice, but she had no idea what was the cause. Prescriptions for rash and water pills. Did not work! My movement disorder neurologist, knew without examination . He said it is the Requip, apologized and began titration. Symptoms went away and no longer taking Requip. I knew there were many compulsive side effects of this agonist, just Not aware of some of the physical effects. Hope this helps.

[123leelee]

How are you doing with titration? Do you take that instead of levodopa ? Or with it? There are so many mess and they all seem to be so toxic!

[laglag]

Something that helped severe pain in my legs is Emergen C. Also, for inflammation & arthritis you might try drinking an ounce or two of 100% Black Cherry juice daily. A friend told me about both of these things because they helped her & others she knows. BC juice takes about a week or so to work & Emergen C took about 3 weeks or so. The pain in the thighs, hips & groin started a little over a year ago, lasted about 3-4 months, I started the Emergen C & the pain was gone in 3 1/2 weeks & hasn't come back. I won't go more than a day without it.

[123leelee in reply to laglag]

I'll try it thanks

[Pelley]

Drop the Amantadine.

[brendau62]

Don't just drop the Amantadine by yourself. You should wean off it over a couple days with Dr. advice. I had splotchy legs for a while but the benefits outweighed the splotches. After about 2 years I developed the swollen ankles, that's when I was taken off it. Doctor said it could take up to 8 weeks for the ankles to get back to normal and it actually took longer.

[123leelee]

Thanks, I'm waiting for Dr to call back

[123leelee]

My ankles started to swell 6 months in, but no one associated it with the drug. I should also mention that I saw many, many Drs prior to diagnosis of PD, including 4 neurologists, Shane on them for not knowing it was PD. Last night and today my tremors are so worse. .8 weeks, wow!

[123leelee]

Yesterday was sheer hell.. I had terrible pains in my knees due to the weather. On top of that my Tremors were so intense I'm assuming it was from withdrawal from the Atlanta game doctor and never got back to me so I ended up taking one pill and sure enough my ankles start to swell up again.

[123leelee]

Swollen legs getting better, but have bad knee pains prior to rain. Dr says slowly add mirapex and seek therapy for anxiety which is making PD worse. I am .