I have spoken before about the published criteria for being considered for HSCT in the UK on the NHS. They are as follows:
- Diagnosis of MS made by a neurologist
- Able to walk, needing at most bilateral assistance to walk 20m without resting
- In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
- New MRI activity within last 12 months
Previously, I met all of these apart from number 3. More recently, they have relaxed that particular criterion in some cases and Professor Sharrack seemed to agree with my argument that as an older MSer, it would be counterproductive to use valuable time trying out various drug regimes. Some experts are also of the view that HSCT is more likely to be successful in patients who have not already had their immune systems compromised through the impact of the stronger MS drugs.
By the time of my meeting with Professor Sharrack in June of this year, criterion 3 was no longer being strictly applied, but as over 12 months had passed since my last MRI, I found that I no longer met criterion 4!
- So, in May 2018, I met all the criteria except number 3.
- And in June 2019, I met all the criteria except number 4.
This is what is keeping me awake at night! I have a nervous wait to see what the MRI shows. I have certainly had worsening of symptoms during this time, but this can be caused by new disease activity or by the body struggling to cope with previous damage to the brain and spinal cord (known as secondary progression).
It is Professor Sharrack’s view that HSCT is not effective for those with secondary progression, although international data suggests otherwise. I am a member of various HSCT support groups and have had conversations and read the blogs of numerous people with Secondary Progressive MS, who have had success in halting the disease using HSCT.
Another confusing factor is that it is just 2 years since my diagnosis and 7 years since my first symptoms and typical disease evolution is for Relapsing MS to become progressive after about 15 years. Clearly my understanding of MS is still at amateur level!
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There has been a bit of excitement in the world of HSCT during recent weeks as fellow MSer, Selma Blair appears to be having HSCT. Selma has been very open about her diagnosis, her struggles with the disease and her search for treatment and support. She is, quite understandably, being less open about her ongoing treatment but has mentioned she is being treated by Dr Burt (HSCT guru) in Chicago. I’m really hoping we see a happy ending to this story at some point in the future.
Back in April, I told you that Gogglebox star and fellow MSer, Scott McCormick was receiving HSCT at Hammersmith Hospital in London. Scott has been safely home with his family for a few weeks now, is doing well, sleeping lots and keeping us amused with his occasional MS:UK videos and twitter posts! As you can see, he has also had to embrace quite drastic change in his appearance!
Scott and his wife, Georgia are also very encouraging of other MSers considering HSCT, which is very much appreciated.