HSCT is a great treatment for multiple sclerosis but, to be fair, its beneficial effects are not felt by everyone who undergoes the therapy.
Autologous hematopoietic stem cell transplantation, to give HSCT its full title, is an intense procedure. It involves harvesting stem cells from each patient, doses of chemotherapy suppress the immune system, before the stem cells are given back. Their job is to aid the building of a rebooted immune system, hopefully free from MS.
Most people who have gone through HSCT report tremendous success and report significant improvements in their symptoms. Unfortunately, not everyone is so fortunate and don’t talk of experiencing any improvements.
Caroline Wyatt, BBC News special correspondent until MS intervened (Pic: BBC News).
Former BBC tv news special correspondent Caroline Wyatt made her decision to travel to Mexico for treatment at Clinica Ruiz.
She flew to Mexico for HSCT therapy and returned to the UK 28 days later.
Now, Caroline has talked about her experiences, from her first symptoms in 2002, MS diagnosis in 2015, HSCT, and beyond.
Her full article is well worth reading and can be found here.
And, how is she now? Caroline writes:
Today, I quite often feel worse than I did before HSCT.
I still need to rest frequently during the day, and when I use my energy for work, I have none left for anything else at all.
But there are sunnier days when I feel a little better than I did immediately before the treatment, and then my hopes soar.
Of the other HSCT patients with whom I keep in touch via several vital support groups on Facebook, some have seen improvements and are overjoyed.
Play a full part
Once again, they can play a full part in family life, and work without exhaustion. Many train hard at the gym or at home, doing their best to regain limb function and balance that was lost over many years.
Others report little change.
And a few have said that they now feel worse than they ever did before HSCT, and wish they had never had the treatment.
Caroline’s hair is regrowing. It fell out after chemotherapy (Pic: Caroline Wyatt).
Some have had fresh relapses since their transplant, and wonder whether to have HSCT again, or re-start MS drugs. It isn’t yet clear why there is such a wide variation in response.
Much about the long-term impact of HSCT on auto-immune diseases, from MS to systemic sclerosis or Crohn’s disease, is still unknown, and may remain unclear until the causes of these diseases are better understood.
Soberingly, over the past year, some patients at international centres have died while having HSCT, making clear that it is not a treatment to be entered into lightly, however effective it can be in halting progression for some.
Many patients have struggled after transplant with everything from migraines, headaches, swollen feet or agonising neuropathic pain in the hands and feet, to viruses or bacterial infections that affect the bladder.
They can also develop other common infections that resurface in the body when the immune system is fragile, such as the Epstein-Barr virus, herpes or shingles.
However, my latest MRI brain scan shows that so far, I have no new lesions on the brain.
It’s a sign, I hope, that I shall be among the lucky ones for whom the treatment does halt further MS progression for several years.
And that’s an outcome I am sure we can all wish for Caroline.
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.
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