Why CIDP Recovery Can Be Slow Even When Treatment Is Working
From steroids to stem cell transplant: what a long Chronic Inflammatory Demyelinating Polyneuropathy treatment pathway can involve before recovery becomes visible
Ayoposi Ojelabi
People searching for CIDP online usually find medical descriptions. They find summaries of treatment options such as steroids, IVIG, plasma exchange, and immunosuppressants. What they rarely find is what those treatments feel like from inside the process, or how long it can take before improvement becomes visible even after treatment has already begun.
Many people expect that once treatment starts, recovery should follow quickly. My experience was different. Treatment began early in my illness, but visible improvement took much longer to appear. What follows is the sequence of treatments my medical team worked through between 2022 and 2024, and what that waiting felt like from inside the process.
I am not a doctor. I cannot tell you what treatment will work for you. What I can do is describe what happened in my own case and how recovery unfolded gradually rather than immediately.
The First Attempt: Steroids
In August 2022, my neurologist prescribed a high dose of steroids. These medications suppress the immune system and can reduce the inflammation attacking the nerves. IVIG is often used as a first-line treatment for CIDP, but steroids are also widely used and sometimes work very well on their own.
I held on to that prescription like it was a promise.
Instead of feeling stronger, I felt weaker. The steroids left me drained and fragile, as though every muscle had forgotten how to obey me. I was exhausted not just physically but emotionally. I told myself it was part of the process, that sometimes treatment takes time before improvement becomes visible.
But the weakness did not turn around. By early September 2022, I could no longer walk. Each step had become an uphill climb. Eventually I could not stand at all.
Treatment had begun. Recovery had not yet followed.
The Second Attempt: IVIG
I was admitted to hospital in September 2022. The doctors moved to intravenous immunoglobulin, IVIG. This therapy works by introducing healthy antibodies that interrupt the immune attack on the nerves.
For five days I watched the slow drip of IVIG flow into my veins and waited for something to change.
This time something shifted. A flicker of strength in my legs. A little more control in my hands. It was not dramatic, but after weeks of fear and uncertainty, it felt like hope.
By October 2022, I was transferred to the neuro-rehabilitation unit at St. Pancras Hospital in London. I began daily physical therapy. Simple actions like sitting up or standing took everything I had. By the time I was discharged in November 2022, I could stand with support and take cautious steps. I left the hospital believing the worst was behind me.
The First Relapse
It did not last.
By December 2022 the weakness had crept back. My legs grew heavy again. I was relapsing, a word I had read about but had not fully understood until I felt my hard-won progress slipping away.
Recovery from CIDP is not always a straight path. Treatment may begin early and improvement may appear, but the illness can still change direction before stabilizing.
The Third Attempt: Plasma Exchange
By December 2022 my neurologist introduced plasma exchange. Over three days, my blood was filtered to remove antibodies attacking my nerves. I continued IVIG alongside it, now receiving treatment twice each month.
Each session left me feeling both hopeful and uncertain. The hospital had become familiar territory. Familiar faces. Long stretches of waiting between appointments.
The treatments continued into January 2023 with little visible change. I began to wonder whether my body was responding to the medicine anymore.
The Fourth Attempt: Mycophenolate
By May 2023 another medication was added. Mycophenolate, an immunosuppressant, was introduced alongside the ongoing IVIG regimen.
The symptoms persisted. In some ways they worsened. I began losing the ability to manage everyday tasks independently. The distance between who I had been and who I was becoming was becoming harder to ignore.
The Fifth Attempt: Cyclophosphamide
By August 2023 the treatment plan moved to cyclophosphamide, a chemotherapy medication usually reserved for more severe or treatment-resistant cases.
Hearing the word chemotherapy was frightening. I was not being treated for cancer, but the seriousness of the treatment was clear.
I agreed because there was still a possibility it could interrupt the immune attack on my nerves.
The first doses were harsh. My body felt stripped of energy. Simple movements became exhausting. The fatigue was overwhelming in a way that is difficult to describe to someone who has not experienced neurological illness.
By October 2023 my condition had deteriorated further. Breathing became more difficult and I began using non-invasive ventilation support.
Each stage of treatment was asking more time than anyone could predict in advance.
The Sixth Attempt: Rituximab
In November 2023 another treatment was introduced. Rituximab targets specific immune cells responsible for attacking the nerves and is often considered when earlier treatments have not produced enough improvement.
By March 2024, after several rounds, I began noticing small changes. A bit more control. A little more breath. A small return of energy.
They were not dramatic changes. They were the kind you notice only when you are paying attention every day. But after months of decline, they mattered.
The Final Option: Stem Cell Transplant
By April 2024 the conversation had moved to stem cell transplant. The aim was to reset my immune system completely using my own harvested cells.
This treatment is usually considered only after several other therapies have been tried. Many people with CIDP never need to reach this stage. In my case, it became the next option available.
It carried serious risks. My lung condition at the time made the procedure more complex, and the chemotherapy required would be aggressive. My consultant was clear about that.
After everything that had already happened, I agreed.
In May 2024 I was transferred to University College London Hospital. The transplant process began with harvesting cells from my femoral vein, followed by intensive chemotherapy.
On August 6, 2024, the final day of the transplant process, I noticed difficulty breathing before bed. On August 7, I woke up intubated. My lungs had failed and machines were breathing for me.
Where Things Stand Now
After the most severe stage of my illness, including ventilatory support across several intensive care units and a long rehabilitation period in Southport, I am now back on IVIG once every two weeks.
The improvements are small. Some weeks they are so small that someone watching from the outside might not notice them. But I notice them. A little more movement here. A little more strength there. Functions returning slowly to parts of my body that had gone quiet.
Against that background, small improvements are not small. They are everything.
I am still in treatment. Still attending every infusion. Still paying attention to what my body is telling me. Still here.
What This Treatment Journey Taught Me About Patience in CIDP Recovery
Steroids. IVIG. Plasma exchange. Mycophenolate. Cyclophosphamide. Rituximab. Stem cell transplant. And now IVIG again.
Each one a chapter. Each one asking something different. And each one taking time before anyone could know whether it was working.
I am not telling this story to discourage anyone facing a CIDP diagnosis. Every person’s experience of this condition is different. Some people respond quickly to first-line treatment and remain stable for years. Others follow a longer and more uncertain path.
What this experience taught me is that treatment in CIDP does not always produce immediate visible recovery. In my case, improvement appeared gradually, often as small adjustments rather than sudden change.
Patience was not separate from recovery. It was part of it.
What kept me going through every unsuccessful treatment and every new attempt was not certainty. I never had certainty. It was the refusal to believe that the current chapter was the last one.
It was not. Not yet. I am still here. Still in treatment. Still writing. And that, for now, is enough.
If you are living with CIDP, supporting someone through neurological recovery, or working in rehabilitation and recognise something in this experience, you are welcome to get in touch through the Contact page.
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Ayoposi Ojelabi|AUTHOR 