About 5 years ago, I was eating ice cream at “Goods candy shop” in Anderson, Indiana, visiting family and enjoying my cone when my Aunt Peg says, “What’s wrong with your legs?” I take a break from noshing and glance down at my gams, noticing a purple hue to them. Thinking “well, that’s weird… huh?” I chalked it up to the autoimmune disorder that I was diagnosed with at age 13… Juvenile Rheumatoid Arthritis which has caused me to have a purple color to my skin if I was cold. But this had a cobweb pattern to it. I just brushed it off to my poor immune system. I wasn’t too concerned… besides I had a delicious treat in my hand to distract me.
Jump to 3 years ago… After visiting various doctors and having a biopsy of my skin tested, it was determined that I had something called Livedo Reticularis. I first thought it was kind of like Ricky Martin’s “livin’ la Vida Loca” which fits my life up to this point, but no… Livedo Reticularis (LR) is a side effect from a Parkinson’s medication called Amantadine, which is commonly used for patients with Dyskinesia. For those who are unsure of what Dyskinesia is, it’s an abnormal, involuntary, or uncontrollable movement.
The Lesser of Two Evils
Fast forward to today. I have a much more visible pattern on my legs and arms. It almost looks like fishnet stockings, but not as stylish. I’ve tried to go off the medication Amantadine, to let the LR improve, but then I can’t control my Dyskinesia. So, it becomes a battle of choosing the lesser of two evils, both options are bad. I can either control my Dyskinesia by taking the medication and just deal with the Livedo Reticularis, or I can choose not to take the Amantadine and have somewhat looking normal limbs but struggle with uncontrollable movements. Hmmm, what to do?
Mutation
With me, being me… I decided I would come up with my own reality. I would choose to view my Livedo Reticularis as a mutation… yeah, like badass mutants from the X-man comics! I can change my skin and appearance to look like I am sickly, weak, frail, and delicate, which will only allow people to assume that I am not a threat. I might even use a prop like a walker to fool my enemies and sell on my deception. But the truth is, I am actually strong, courageous, and feisty. A true Superheroine.
Has anyone out there had to choose to take a medication that gave you a negative side effect, but you still continue to take it?
iii look like this but dont take any meds for any of this….. please hekp
Hi Missy,
As far as I know, no medication will prevent Livedo Reticularis. You just have to purchase long dresses to hide your legs!
I have always had Livedo Reticularis but the dermatologist believes amantadine made it much worse. I have multiple sclerosis and cronic fatigue. My legs get the worst fatigue. My neurologist prescribed me provigil but my insurance company denied it unless I failed on amantadine first. The crappy part is it didn’t help and I reacted badly to provigil. I have venous malformation and I was told amantadine made it worse. I am on Adderall now and it seems to helping so far. Hopefully you are doing well!
Hello Nicole,
It’s a frustrating side effect! Sorry you have to deal with it!
The first Parkinson med I tried was Mirapex. It made me impulsive. I blame that drug for my impulse online shopping habit, although my husband said that I always had that. My neurologist once tried to switch me from Mirapex to Requip, because the Mirapex was making me dyslexic, and I used to be a voracious reader, and worked in several libraries. I was 2 years into my dream job teaching library skills at the school my kids were attending, that I suddenly couldn’t type, couldn’t hold up a book to read to kids so they could see the pictures, and then my voice got all hiccupy, and I couldn’t shelve books, to the point where I couldn’t balance a book on my lap or turn the pages. I gave up my dream job. I can relate to Shannan with trying to parent with Parkinsons. How do you cut up your child’s meat when you can’t cut your own. My husband was a workaholic who rarely saw our kids. They were 5 and 7 when I retired, and they were sadly neglected for the rest of their childhood. they are 25 and 27 now, and I think my Parkinson’s has had more of a negative effect on them then on me. Now with my husband passed away and me not driving, I am a burden to them and I hate it. Gosh Allison, I was just going to write about my blue legs, and this comment happened. You can delete this comment/rant , but now that I have written it I will send it, I don’t know why – maybe shared misery.
Karen,
Rant away! That’s what my blog is for… a shared experience. Thank you for sharing your story!
I had the fishnet reaction too, but only in my right leg. When I went to my Ortho, for a follow-up for something else, they freaked out and thought I had a DVT. I also have to take a fluid pill because I get swelling in that same leg, which started a few years before I took Amantadine (they tried me on it before I took Sinemet). My right side was the first side I had symptoms on. I wish Amazon sold new bodies…
Lj,
Yes, and with Amazon’s 2-day free shipping!
Had a horrible reaction to Mirapex. My regular neurologist had left his practice, and the physician who replaced him started me on Mirapex. Next thing I knew, I couldn’t think straight. I didn’t recognize normal everyday objects like pens, telephones or my lawnmower, nor understand how they worked or what to do with them. Not to mention the hallucinations. The new neurologist didn’t seem to care. I ended up taking myself off everything. Once I did that I could finally think straight, but couldn’t take ten steps without freezing or falling. Luckily I ran into my original neurologist at a PD conference and was able to get back in with him. He actually listened to me, and straightened my meds around so I could function again.
Joe,
That sounds awful! Glad you can get it figured out.
I will admit that while I’ve pursued a lot of information since being diagnosed 2 years ago I have taken a ‘head in the sand’ approach to what the possible side effects ould be to my meds. While they were working on. my diagnosis my neurologist (a generalist) started me on sinemet and it helped a lot. My motion disorder specialist neurologist I started seeing on the generalist’s recommendation made the diagnosis in August, 2018 and added primidone; amantadine was added 6 months later. I take it only in the morning and afternoon, never after 4, because it can cause hallucinations and other nsf stuff at night. Otherwise, i really don’t know about any side effects … and your story makes me want to stay oblivious and just learn as it comes to me from others. Thanks for your info and your viewing it as being a mutant!!! I don’t have any real side effects yet, but now have a way to view them if (or more likely when) they come!
I am also an amantadine junkie. Been taking for about 9 years. I got the fish net stocking thing too and my dr. had me reduce the amount I was taking which led to neurologic malignant syndrome which was the sickest I have been in the 11!years I have had PD. so if u decide to go off do it very slowly!!
shout out to your caregiver dog. you get the Real Patient Award!
the best to u both!!
Lenetta
Oh yes and I am taking amantadine again — no lace and no nms!!
I had the same reaction to Amantadine
I had the same leg discoloration reaction from Amantadine
I think you got cross contamination on a blood transfusion from an octopus. They change colors you know.
Allison (if that’s you real name), perhaps on you planet that is normal. As long as you are attempt to stoke an alternative reality.
Perhaps your real name is 484596#234@098 and nobody has discooered that fact yet. And another 3CPO, the text size on this COMMENT box is way too small.
Is 484596#234@098 my full name, or just my first name?
Goodness, so much to unpack here Smitty.
Well first, there is nothing more perfect than the imperfect. You’re beautiful just the way you are.
Second, somewhere a 40 year old virgin living in his parent’s basement just shed a tear, because you called it X-Man instead of X-Men. I don’t know how you’ll live with yourself, but that is your cross to bare.
Third, as a matter of fact there are some medications that have negative side effects that I continue to take. Requip makes me see things (mostly bugs) that aren’t there, feel invincible, and is starting to make me hypersexual. Did I say negative? I meant positive! I also take a bunch of epilepsy medications that make me suicidal as hell… but in a fun not so bummer way. I know I know, I realize all of this has taken me from a 12 to like a 10. Don’t you cry for me though. It could be worse, I could be a 9. 😳
Perky,
I’ve been taking Amantadine for several years but haven’t noticed any effects like the one you mentioned. When I started taking Sinemet I was told that after a period of time ( 3 – 5 years) that I may experience dyskinesia. Sure enough, one of my legs starting to jerk around when my meds peaked. It was so bad, I couldn’t walk. It got to the point that I could predict precisely when my leg would begin its dance. (I called it my “wacky” leg). It was always around 2 hours after I took Sinemet. I found relief only after I had DBS which meant that I could cut my Sinemet dose in half. Of course, I could have stopped taking Sinemet but then I couldn’t move! Better a wacky leg than being unable to move.
John,
I would also choose a wacky leg any day! Sometimes it feels better to have some dyskinesia dancing, than to be rigid and slow… trade off!
Hi Allison:
I have been taking Amantadine for about 10 years. Thank goodness, no reaction. Is your spider web pattern only on your arms & legs?
Yes. Tough decision. You’ll figure it out.
Jan
Jan,
Yeah, it a tough decision… happy to hear that you don’t have that side effect!
Allison,
I was on amantadine for a short period of time. My legs looked like yours and my feet swelled up like to watermelons at the end of my legs. My doctor prescribed Rimantadine for me. Whether it works or is just in my head…not sure but my dyskinesia is better.
My doctor said there was a new once a day medication to battle dyskinesia. Haven’t gotten name of it yet going to see her in a couple weeks. I’ll let you know when I find out
Tary,
I think you’re talking about Ongentys, which works to increase one time. Here’s the link: https://ongentyshcp.com/?gclid=CjwKCAjw_NX7BRA1EiwA2dpg0oAtx97_hWCrejrsIXBxLG7Q2Fr-towqaUtBPVcbS3mJ7lylTCZ4-xoC7HkQAvD_BwE&gclsrc=aw.ds
It’s actually catcalled Gocovri. It’s to treat dyskinesia and “off” times n. I checking with my neurologist to check it out
Gocovry is an extended release version of amantadine, so it enters your system more slowly. I tried amantadine initially and had the reticularis side effect also. I decided to stop taking that drug. I didn’t try the Gocovry.
I take Gocovri currently now, and it works great for me. Much more on time without Dskynesia.
It is called Gocovri and VERY expensive….I went through the drug manufacturer to get it for free. I tried Amantadine prior. Many medicines make me extremely nauseous or just absolutely no appetite and can’t force myself to eat…and this on a low dose! Amantadine made me very nauseous same with Requip, the other “A” medicine that’s a Dopamine agonist and a couple others. I’ve been able to tolerate Sinemet well except now almost 6 years into my diagnosis I’m having dose failure, unpredictable kick in or sudden “off”. I was switched to Rytary 2 years ago. 1st day was the best day of my life since my diagnosis and beginning treatment the next day and most days going forward I began having the worst Dyskinesias ever. I felt like I was doing an aerobic workout and throwing my head and back as well. I would break out into a sweat. This could occur at anytime in my medication cycle. I forget now exactly what the Gocovri did…I think instead of the normal constipation I had diarrhea! Fast forward to 10/2019 I had bilateral DBS with the Boston Scientific Gevia device…took away the Dykinesia almost completely. Every so often I get a mild bout. Forward to 10/2020 I’m going in on 10/23 for a “revision” on my left side. Programming has been minimally responsive, I’ve developed additional symptoms of slurred speech, in addition to the right foot Dystonia it appears I now have Dystonia in my entire right leg and it’s causing a toe drag, my balance and stiffness are much worse. They are going to move the left wire to a new target area. Praying for positive results to get back to as close to a normal life as possible as a,mother of a 4 year old.
Hey Perkie. I take that medication. I’m wondering, did the side effect happen right away or after sometime of taking it? Also if you stop the medication, would it go back to normal? I read about that side effect when I started taking it. I wonder if the majority of people get that side effect. My answer is I don’t know what I would do, because I sure like wearing shorts and dresses
Delaine,
I didn’t notice it right away and from what I have read about it, once the medication is stopped, your skin will go back to normal. It’s a difficult decision. Good luck!
Mine came pretty quick from amantadine. It’s there more pronounced on cold mornings. I got it fairly quickly. I can’t do dopamine agonists so I live with it