Inspire’s MS Community Overcomes Patient Isolation with Peer-to-Peer Support and Experience

By Kathleen Hoffman, PhD, MSPH

Over 15,000 members of Inspire have interest in, searched for, or have posted about multiple sclerosis (MS). Members have written over 4000 posts and more than 2000 searches have been conducted on MS.

Pharmaceutical marketers wonder if patients discuss medications with each other online. The answer is a definitive yes. Patients also discuss what they learned online about treatments with their health care provider.

It is not unusual for members to reach out after just being diagnosed. “I was just diagnosed on ______. I have to decide which treatment to start in 3 weeks. Any advice or suggestions would be greatly appreciated.” Members provided specific medication names.

On Inspire, expert members, both carers and patients, explain common MS medications to the newly diagnosed. “Well there are 2 types of medicines that I can think of. The maintenance meds to reduce the number of flare ups and slow the progression, and the medicines to treat the symptoms.”

In another example, an expert member explained to a newbie how one maintenance medication worked.

“I was diagnosed in 19__ and have taken [brand name] for several years now. You won’t notice a difference unless you’ve had several exacerbations, and then you might notice that you have fewer and not as severe…ask your neurologist if it would be right for you…The good news for you that are newly diagnosed is that there are now drugs that have been successful at really slowing down the progression of this disease.”

Some members explained that they switched medications due to having to self-administer injections. That conversation ended with well wishes from another member, “Hope you found the right meds to start on, it’s always hard to see what will work good for you. I have been on ____ for 10 years and it seems to be working for me.”

Some conversations are long-lasting and even develop relationships. Many give peer-to-peer tips on managing common symptoms. For example, one public conversation between five members with MS lasted two months and contained over 100 posts. Part of this conversation involved sharing how to cope with heat while living with MS. “I live in Texas and heat is a very big issue here. Whenever I start to get warm (even if just walking) I notice that my feet and legs start what I call painful tingling. Getting cool as soon as possible helps, even if I have to take my shoes off. Sometimes just an ice cold drink of water helps.”

Losing health insurance impacted one member of Inspire. For over a year after an MS diagnosis, the member had no treatment. Unfortunately, during that time, their condition progressed. Once the member got health insurance, they posted asking other members which medications to take. Fearful of medications, the member wanted to know if there were ways to take the medications so that they would not be “debilitating.”

The member’s MS peers on Inspire promptly answered. The first response came from a caregiver who quickly explained that everyone responds to medications differently. This member described her loved one’s response to three different medications (naming brands), provided information about side effects suffered, but also related long term positive experiences and results from each of the medication.

The newly diagnosed are not the only members asking about treatment. Members at all stages support each other throughout the patient journey. One member described relief at changing a treatment strategy:

“I will tell you that I have been on ____since [month]. I am really enjoying the fact that I no longer have to give myself injections- I go to the hospital every [# of ] weeks and they hook me up to an infusion. After >[# of] years of shooting myself up with MS treatments it’s really nice not to have to aim and hope that I don’t hit a nerve.”

One member had been diagnosed over a decade prior to posting. They wrote that they had tried several medications over the years with limited success, experiencing side effects or, as they wrote, “no thank you is all I can say.” After a flare and testing that found a new lesion, the member’s physician recommended a new medication. “After reading about it, I have many concerns…. I feel so lost and alone…it’s really been a time to look at things differently and be grateful for what I still have and what I can still do.”

Members did reply with their experiences with different medications, but naming brands was only part of the answer. Members also identified with the emotions expressed by this member and gave emotional support as well. One responded, “I thought I was lost and alone. Sometimes I feel I’m the only one going through this…. I just responded to let you that someone understands and that you are not alone.”

Living with a chronic condition like MS means new challenges and daily, sometimes hourly, self care questions. Having an online community available to validate information, provide support, and help answer MS management questions make it a highly valued resource to patients with MS and their carers.