8 posts from September, 2018

Lupus Hair Loss and Folic Acid Hair Loss: Tips and Treatments

Posted September 13th, 2018 by

Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane?

Lupus Hair Loss and Folic Acid Hair Loss: Tips and Treatments

How members manage hair loss

A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.)

The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss.

“My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acidbiotin). This doesn’t stop it from falling out but it speeded up healthy hair growth.”

“Plaquanil causes hair loss. I’ve been on it for over 15 years. My sink and shower usually gets clogged up from my hair loss. I get sew ins or braids and wear wigs occasionally. Just last month I got my hair cut short to eliminate breakages.”

“My hair started thinning and getting coarse before I was diagnosed, but it falls out in masses after 3 weeks on Plaquanil. I can’t afford hair extensions, but my doctor and hair dresser both told me about the same product that people with lupus and cancer use….and it is MAGIC. It is called Toppik and it comes in many different colors and forms. I find the powder fibers to work best.”

“I started taking 5000 units of Biotin. See a huge difference the first month and the second month I actually had to get my hair trimmed.”

Others say that supplements and treatments haven’t helped in their case, so they stick with short haircuts, wigs and/or extensions.

Lupus News Today rounded up “9 Tips to Prevent Hair Loss,” including talking with your doctor about your treatments, keeping stress levels low, getting plenty of rest, and avoiding sun exposure and certain kinds of lighting that may contribute to hair loss.

Have you experienced lupus-related hair loss? Join PatientsLikeMe or log in to connect with others on this topic today.

Share this post on Twitter and help spread the word.


Driving with Parkinson’s disease: Safety considerations + turning over the keys

Posted September 10th, 2018 by

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around.

Considerations for driving with PD + 7 questions to ask yourself

“You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.”

Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities.

There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive:

  • How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights?
  • Would I be putting my passenger (friend or loved one) at risk?
  • How fast is my reaction time? Could I safely avoid a surprise obstacle in the road?
  • Has anyone (friend or family member) commented negatively on my ability to drive?
  • Can I handle multiple activities at the same time (whether driving or not)?
  • Can I effectively and quickly turn the wheel or step on the brake with enough strength?
  • Do any of my medications cause side effects like sleepiness, dizziness, blurred vision, or confusion?

AAA Foundation for Traffic Safety published this self-assessment quiz and booklet for the general population of drivers ages 65+, but your own evaluation of your driving (and even your doctor’s assessment) may not capture all the true risks.

Driving assessments

PatientsLikeMe members have talked about how you can get a driving assessment to help you independently determine your driving abilities (click here to learn more about different types of professional driving assessments; note: these assessments are not covered by Medicare or private health insurance and you should ask if the results may be shared with your state and affect the status of your driver’s license).

Older drivers can also attend a (confidential) CarFit event, where a team of trained technicians and/or health professionals work with you to ensure you “fit” your vehicle properly for maximum comfort and safety.

Your community’s experiences

Join PatientsLikeMe or log in to see what members have said about the challenges of giving up their keys — as well as the potential bright side, such as no longer having to stress about driving (and associated costs, like car payments, insurance and gas) and — more importantly — possibly hurting someone.

Karl Robb (our blog partner), who has young-onset PD, has written about how he realized he gave up driving at age 30 because of worsening dyskinesia. “Relinquishing the keys to your car is a selfless act of caring and compassion,” he says in a piece for the Parkinson’s Foundation. “It shows that you care about yourself and those who may be put in harm’s way.”

Getting around town

Thinking about giving up or reducing your driving? Look into public transportation or free/reduced-cost transportation services in your area, and ask friends and family for rides (it can help to plan ahead and have a set calendar or day of each week for running errands with them).

“Turns out it is a good time to be a non-driver,” notes one member. “Surely you have heard of LYFT and Uber? They offer inexpensive rides in many US cities. maybe your family could set you up with one.” (See the growing list of cities that Lyft and Uber serve, as well as ever-expanding delivery services, like Instacart for groceries and medications/pharmacy goods.)

Also, explore these other transportation resources:

Join PatientsLikeMe and this PD forum discussion to add your thoughts, questions or concerns about driving. The community is here for you!

Share this post on Twitter and help spread the word.