When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

• Using attractive scarves or hats to cover thinning hair or bald spots
• Experimenting with different cosmetics to see what works best
• Treating yourself to a spa manicure and pedicure as a pick-me-up
• Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
• Soaking in a scented Epsom salt bath to ease pain and relax
• Consulting with a hair stylist about better styles for thinning hair
• Using gentle, non-drying facial cleansers and lotions
• Switching to an electric razor to improve ease and safety
• Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.

Do you love your thyroid?  Do you hate it?  Or more importantly, do you even know where it is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

In honor of Thyroid Awareness Month this January, we wanted to spotlight Dear Thyroid, a website that encourages literary self-expression from thyroid patients, including patients with lesser known thyroid conditions such as thyroid cancer, Hashimoto’s thyroiditis and hyperthyroidism.  The slogan is “Healing Our Thyroids One Letter at a Time, As Many as It Takes,” and each love/hate letter is displayed with retro and pinup artwork as “subversive” yet “iconic images of perfect health and beauty.”  Got a few things you’d like to say to your thyroid?  Write them down today and experience how good it feels to let it all out!  (Read Dear Thyroid’s submission details.)

Another source of relief comes from finding people who truly understand what you’re going through – namely, other patients like you.  Connect with the more than 3,500 patients with hypothyroidism at PatientsLikeMe today and see how they are managing their condition.  How many of them are taking Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine?  And how do they rate the effectiveness, side effects, cost and more?  Dig into our in-depth treatment evaluations to learn from real-world patient experiences with this common hypothyroidism medication.

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.

Metoprolol Succ ER (the common abbreviation for Metoprolol Succinate ER and a generic form of Toprol XL) is an extended release formulation of the drug metoprolol, which is used for the treatment of angina or hypertension and to reduce mortality/hospitalization in patients with heart failure who are already receiving cardiac and diuretic medications.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 185 patients report using Metoprolol Succ ER.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 50mg daily.

Wondering about Metoprolol Succ ER side effects?  Some of the commonly reported side effects include loss of energy, fatigue, excessive daytime drowsiness and weight gain.  Check out the 29 treatment evaluations of Metoprolol Succ ER submitted by our patients to gain even more insight.  For example, the following are several tips submitted by Metroprolol Succ ER users on their evaluations:

• “Remember to get up slowly.  [This drug] has been making me very light headed and dizzy.  Also be sure to hydrate frequently.”

• “Try to take it everyday at the same time – I am really bad at this, so I’ve started taking at night.”

• “When I miss a dose or two, I get an instant, awful, pounding headache on the top of my head, as my blood pressure goes through the roof, and my ears turn beet red and I can literally feel the heat coming off of them.”

• “Be prepared to feel cold physically when taking this medication. Dress warmly even when in air conditioning.”

JOIN PATIENTSLIKEME TODAY

Have you taken Metoprolol Succ ER?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Solupred is an international brand of prednisolone, a widely prescribed corticosteroid that modifies the body’s immune response and decreases inflammation. It is used to treat a host of inflammatory and autoimmune health conditions, including multiple sclerosis (acute exacerbations), organ rejection, lupus, psoriasis, asthma and ulcerative colitis.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, two patients report using Solupred currently while 68 patients report using another form of prednisolone.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported prednisolone duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 5mg daily.

Wondering about Solupred side effects?  Some of the commonly reported side effects of prednisolone include weight gain, heart palpitations, insomnia, dry eyes and abdominal bloating.  Check out the 22 treatment evaluations of prednisolone (the generic form of Solupred) submitted by our patients to gain even more insight.

JOIN PATIENTSLIKEME TODAY

Have you taken Solupred – or another brand of prednisolone?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

ADCO Mirteron is an international brand of mirtazapine, a tetracyclic antidepressant that is used to treat depression and, in come cases, insomnia.  At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, we have just one patient who reports taking ADCO Mirteron while more than 300 patients report taking another branded or generic formulation of mirtazapine. (Other brand names include Remeron, Avanza, Zispin, Axit, Mirzaten and Rexer.)

What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported dosage of mirtazapine is 15mg daily, the most commonly reported cost is “under $25,” and the most commonly reported side effects include weight gain, increased appetite and drowsiness.  153 of our patients have discontinued mirtazapine, with side effects, lack of efficacy and doctor’s advice among the top reasons cited.

Here are some highlights from the 130 treatment evaluations our patients have submitted for mirtazapine (the generic form of ADCO Mirteron):

• “After trying almost every other depression med and mood stabilizer out there, this is the one that’s worked well for me. Wish I had found it sooner.” – Patient with major depressive disorder

• “I take this medicine to help me sleep at night, but it also helps a bit with my depression and anxiety.” – Patient with fibromyalgia

• “Works well, but leaves me a little sleepy or slow throughout the day. Need to make sure you get 8-9 hours sleep or the sleepy feeling stays with you all day.” – Patient with post-traumatic stress disorder (PTSD)

• “Very hungry when taking this med. I take 30mg in the morning and by 2pm I have had my total daily allowance of calories!” – Patient with general anxiety disorder (GAD)

• “When I was depressed, it was very effective and my body adjusted to the sedation effects. As my depression lifted, I experienced more and more difficulty in waking up.” - Patient with bipolar disorder

• “I can see why other people can have problems with the constant drowsiness and increased appetite/weight gain, but for an anxious under-eating insomniac like me, it was ideal.” – Patient with major depressive disorder

JOIN PATIENTSLIKEME TODAY

Have you taken ADCO Mirteron – or another brand of mirtazapine?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay for the support.  With nearly 30,000 members who report a mental health condition, we have a tremendous amount of discussion and activity in our Mental Health and Behavior Forum.  Chime in today.

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica^® and Eli Lilly’s Cymbalta^® as prescribed treatments for your fibromyalgia.

PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned:

1. Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.



2. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.



3. Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.

So what makes this data interesting?

• There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them.  Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.

• This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients.  Additionally, you frequently report experiencing little to no efficacy on either treatment.  One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.

• This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials.  However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches.  By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe.  It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.

Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe.  You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.

You keep on saying it and we’ll keep on relaying it:  Treat Us Right.