Taking Parkinson's Medication at Young Age

Posted by NasbyE @nasbyevan, 1 day ago

Hello,

I'm 31 years old and have been taking carbidopa-levodopa since 2024 for not for its intended purpose Parkinson's. I have had a right calf cramp since 2021 and the neurologist prescribed me Carbidopa-levodopa in 2024 to see if it would make a difference which it has greatly improved my daily pain and calf stiffness.

I have learned from several orher medical professionals since starting the medication its relatively rare medication for someone my age. I'm curious to know of any other young individuals who are taking Parkinson's medication for non Parkinson's related medical treatment.?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Are you sure it is non-Parkinson related? Any other symptoms? It is surprising to me to be taking those drugs at so young an age.

REPLY

@nasbyevan - welcome to Mayo Clinic Connect. That is interesting that carbidopa- levidopa (C-L) brings relief to your calf cramps and stiffness.

I wanted to tag @wkrebs59 and @hopeful33250 to see if they may have heard of off-label usage of C-L like this, and especially in younger adults?

nasbyevan, did your doctor give you a diagnosis for your calf issue? If so, what was the diagnosis?

REPLY
Profile picture for Lisa Lucier, Moderator @lisalucier

@nasbyevan - welcome to Mayo Clinic Connect. That is interesting that carbidopa- levidopa (C-L) brings relief to your calf cramps and stiffness.

I wanted to tag @wkrebs59 and @hopeful33250 to see if they may have heard of off-label usage of C-L like this, and especially in younger adults?

nasbyevan, did your doctor give you a diagnosis for your calf issue? If so, what was the diagnosis?

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@lisalucier
i agree it would be interesting to know what the diagnosis is b/c this does sound odd to prescribe that drug for calf stiffness. did he say you might have Parkinson's ?

REPLY

This Mayo Clinic information on carbidopa-levodopa seems to imply that this is a medication for specifically used for Parkinson's:

- Carbidopa and levodopa (oral route) https://www.mayoclinic.org/drugs-supplements/carbidopa-and-levodopa-oral-route/

That said, many, many medications are used off-label in the U.S. yearly, as this article from the Mayo Clinic Health System outlines:

- Weigh benefits, risks carefully before taking off-label medication https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/taking-off-label-medication

So, not knowing the mind of the doctor who prescribed this medication to @nasbyevan, I do not know at all what was in his or her mind or how he or she chose this medication to try for the leg cramp issues. Do you know at all, nasbyevan?

REPLY

Hello @nasbyevan, I would like to join @lisalucier in welcoming you to the PD support group on Mayo Connect. It is interesting that you are taking a PD medication for a non-PD issue. I can understand, though, why it helps you. Muscle stiffness is part of a PD diagnosis, and C-L definitely helps with that particular symptom. I had far less stiffness when I started C-L.

Do you have any other movement-related problems or voice/swallowing issues?

REPLY
Profile picture for nova11723 @nova11723

Are you sure it is non-Parkinson related? Any other symptoms? It is surprising to me to be taking those drugs at so young an age.

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@nova11723
The neurologist made it very clear that it's not Parkinson related. All my medical tests are negative/normal which include, MRIs, X-rays, EMGs, blood, vascular, lab movement disorder, and other nerve tests.
I have two main symptoms right calf stiffness and significant right calf atrophy. My best relief for the stiffness is walk and inactivity makes the stiffness worse. The atrophy is worse with physical therapy.

REPLY
Profile picture for Lisa Lucier, Moderator @lisalucier

@nasbyevan - welcome to Mayo Clinic Connect. That is interesting that carbidopa- levidopa (C-L) brings relief to your calf cramps and stiffness.

I wanted to tag @wkrebs59 and @hopeful33250 to see if they may have heard of off-label usage of C-L like this, and especially in younger adults?

nasbyevan, did your doctor give you a diagnosis for your calf issue? If so, what was the diagnosis?

Jump to this post

@lisalucier
Hello,
The doctor who prescribed me the carbidopa-levodopa is a neurologist from the mayo Clinic in Rochester. After years of medical testing which included MRIs, X-rays, EMGs, blood, vascular and lab movement disorder, all come back with the same results negative/normal. My calf unfortunately remains undiagnosed.

REPLY
Profile picture for Lisa Lucier, Moderator @lisalucier

This Mayo Clinic information on carbidopa-levodopa seems to imply that this is a medication for specifically used for Parkinson's:

- Carbidopa and levodopa (oral route) https://www.mayoclinic.org/drugs-supplements/carbidopa-and-levodopa-oral-route/

That said, many, many medications are used off-label in the U.S. yearly, as this article from the Mayo Clinic Health System outlines:

- Weigh benefits, risks carefully before taking off-label medication https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/taking-off-label-medication

So, not knowing the mind of the doctor who prescribed this medication to @nasbyevan, I do not know at all what was in his or her mind or how he or she chose this medication to try for the leg cramp issues. Do you know at all, nasbyevan?

Jump to this post

@lisalucier
The neurologist prescribed me carbidopa-levodopa and baclofen in late 2024 to see if either would have an impact. The baclofen had little to no impact compared to the carbidopa-levodopa. I currently take four pills three times daily.

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @nasbyevan, I would like to join @lisalucier in welcoming you to the PD support group on Mayo Connect. It is interesting that you are taking a PD medication for a non-PD issue. I can understand, though, why it helps you. Muscle stiffness is part of a PD diagnosis, and C-L definitely helps with that particular symptom. I had far less stiffness when I started C-L.

Do you have any other movement-related problems or voice/swallowing issues?

Jump to this post

@hopeful33250
When it comes to movement related problems. Walking is by my best relief. Inactivity increases the stiffness. Physical therapy causes thr atrophy to increase. I have no voice or swallowing issues.

REPLY
Profile picture for NasbyE @nasbyevan

@hopeful33250
When it comes to movement related problems. Walking is by my best relief. Inactivity increases the stiffness. Physical therapy causes thr atrophy to increase. I have no voice or swallowing issues.

Jump to this post

@nasbyevan I don't believe there is a medical test for Parkinsons except maybe a PET scan. But that sounds pretty serious, and if the medication works, that is great. Just hard to understand what is going on.

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