What It’s Like Treating Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) With Self-Injections

It took years and a few treatment adjustments for Ramona to find a regimen that allows her to live the slower-paced but satisfied life she has now.

When Ramona was diagnosed with CIDP in May 2022, her treatment initially helped. She began intravenous immunoglobulin therapy (IVIG) every three weeks, and at first, her neuropathy and weakness improved. Over time, however, the benefits wore off — even after her dose was increased. By two and a half weeks after each infusion, "I was feeling so low,” Ramona says. “I was so wiped out.”

Her provider increased her IVIG frequency to every two weeks, and the infusions started doing the trick. “I finally stopped experiencing this yo-yo effect with my energy levels,” Ramona explains.

With her neurologist’s approval, Ramona began combining IVIG treatment with once-weekly FcRN inhibitor injections in May 2025. She initially had the injections administered at a healthcare facility — until she learned she could do them herself, at home. “As soon as my doctor mentioned it, I said, ‘Write me the order,’” she says.

Plus, “with the [IVIG] infusions, my schedule was getting complex, and I felt switching over to the self-injection would greatly open up my time,” Ramona adds.

Ramona didn’t have any reservations about doing self-injections. Her experience administering injections as a registered nurse — paired with her personal experiences self-injecting vitamin B12 supplements and a GLP-1/GIP medication — allowed her to feel confident in the decision.

She then sits down in a comfortable spot and selects her injection site on the stomach. The injection site needs to be different each week, so she has divided her stomach into four “quadrants” and rotates each week.

Ramona then cleans the injection site with an alcohol swab and lets it dry.

She inserts the needle at a 45-degree angle and calls out to her smart device to set a timer for 90 seconds, as the medication needs to be administered slowly. During that time, Ramona steadily presses down on the plunger to administer the medication. Although her care team has provided lidocaine to numb the injection site, Ramona says she hasn’t needed it.

“All you feel is the needle piercing the skin, which is just a small pinch,” says Ramona. “If the medication’s cold, you definitely feel it more; it may sting a little bit. And then you feel it absorb into the tissue.”

Despite having some dexterity issues, Ramona says she hasn’t had a problem using the prefilled syringes.

Lastly, she puts the prefilled syringe into a sharps container.

Ramona experienced an injection-site reaction the first couple of times, which she knew was a possibility. “I broke out with a pretty good-sized red blob, but it didn't itch, it didn't hurt,” she says, adding that cortisone cream helped soothe the area. She hasn’t had any reaction or other side effects since then.

Since the self-injections only take a few minutes from start to finish, Ramona doesn’t have to change her routine to accommodate them.

As a trauma nurse for over 30 years, Ramona was accustomed to treating patients. Never did she think she’d be the one receiving treatment for a rare autoimmune condition. She had only ever been to a hospital for work, and now, she’s in and out of the hospital and doctors’ offices to manage CIDP — at times, leaving at a moment’s notice with nothing but her hospital 'go bag' in tow. Nonetheless, Ramona is committed to setting and reaching her treatment goals.

One such goal: Being able to walk her beloved dog, Bandit, every day. There was a time when Ramona didn’t think this would be possible, but “then physical therapy changed my life,” she says.

On top of seeing a physical therapist when her mobility needs some extra attention, Ramona makes a point of working on her balance, dexterity, and flexibility at home. She’s created a physical therapy station in her dining room, equipped with a slant board to stretch her calf and help with foot drop; a block of foam to practice balancing on different surfaces; and other devices. She also keeps dexterity balls in her living room, so she can work on her hand strength and coordination as she watches TV, and wears leg braces for extra stability.

Today, Ramona and Bandit are out for a walk every day — and with the confidence that if Bandit pulls on his leash or she stumbles, she has the physical strength to manage it. Yoga and swimming, along with dietary changes like snacking less and eating more protein, have also helped Ramona improve her overall health and better manage CIDP symptoms.

“I’ve had to change a lot of my hobbies, but I have a great circle of friends around me who send me puzzles and little projects, which helps me feel more content being homebound,” says Ramona.

And with Bandit by her side, Ramona feels she has the support to carve a new path for herself, living with CIDP.

“I’ve come to like the little niche I've built for myself.”