After receiving a stem cell transplant in September 2021, I knew I had a long recovery journey ahead of me. I wasn’t sure what to expect, as I know everyone has different experiences.

Transplant side effects

At first I had severe fatigue and would often nap multiple times a day. I found this particularly hard to cope with. It was really important to keep as active as possible during recovery. One valuable piece of advice my doctor gave me was to not give in to the fatigue. Some other affects I experienced included mild bone pains and headaches, luckily these were manageable with pain relief.

The conditioning therapy and transplant also had an effect on my menstrual cycles and hormones. They caused my cycles to become irregular, alongside severely painful menstrual cramps, and hot flushes. My skin and hair became very greasy which meant I had to wash almost every day.

Thankfully, all these side effects eventually stopped and my cycle returned to normal around six months after the transplant.

Being observed

Over the next nine months I did not need any blood or platelet transfusions. My last transfusion was in September 2021. During this observation period, I had regular hospital appointments and blood tests. The appointments were initially once a week, but soon moved to monthly. As part of the observations, I had two bone marrow biopsies. The first biopsy was at 25 days post-transplant, and the second at 100 days.

I still have to take antibiotics and immunosuppressants, but at nine months post-transplant my doctors began the process of weaning me off my immunosuppression. The plan was to reduce gradually every four weeks. At the beginning this went smoothly, but I got stuck half way through. This is when we started to notice some symptoms of GVHD.

First signs of GVHD

The first signs of GVHD presented as skin rashes that looked like eczema. I was referred to a dermatologist who performed a skin biopsy. The results showed some indications of GVHD so I was given steroid creams and shampoos to treat my skin and scalp. Unfortunately, the creams and shampoos didn’t work for me. I noticed my hair was getting thinner on my scalp, then I noticed all the hair on my face including my eyebrows and eyelashes were falling out.
At this stage the rashes had spread to my face, so my doctors decided it was time to try oral steroids.

Treatment

I was given a high dose on Prednisolone for two weeks, which fully cleared my face rashes. However, when it came to weaning off my face flared up again, this flare was worse than before.

I suspected my immunosuppressant (Ciclosporin) could be causing the problem. My doctors agreed to let me test this based on the results we’d seen in my previous reductions. I dropped my ciclosporin and increased my steroids back up. Over the next four weeks we saw an improvement in my skin. This meant that I was able to reduce my steroids further.

My doctors took me off ciclosporin and replaced it with a different immunosuppression (Mycophenolate Mofetil – MMF). MMF is often given for organ transplants, however Dermatologists do use MMF to treat skin conditions.

I started taking MMF in March 2023, at a half dose alongside my steroids. I stayed at this dose for the next three months, where I began to see a huge improvement, to the point where my skin was almost clear.

In June, I was given the go ahead to begin weaning off my steroids again, but at a much slower rate. With each reduction I got a mild flare, but I have been able to manage these with steroid creams.

Now in July 2023, I am on a much lower dose of steroids and my skin is clear. Once I am completely off the steroids, I will wean off my immunosuppression. At this stage I will be able to stop most of my medications, apart from Penicillin.

It's still a journey, but I am almost there!

Hey! I'm Ellen - At the end of March 2021 my life changed when I was diagnosed with severe aplastic anaemia (SAA). But I am fighting fit and living my life to the fullest! Read more from Ellen    Read more AA voices

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AA voices

AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].