Last reply 3 months ago
HSCT UK

Hi, I have not visited Shift for a few years now, like another member said ‘trying’ to get on and lead a normal life without my head being consumed with MSsy things!
I had HSCT at Kings College Hospital transplant date 14th Feb 2018,
Ive two birthdays like the Queen only I wish I could walk as well as her Majesty!!!
Although relatively young 48 diagnosed with PPMS 2009,
I battled long and hard for three years almost with an MRI showing the slight progression of lesions needed to perform HSCT it took over my time my life with trips to London, emails etcetc, honestly having this condition feels like a full time job!
The treatment was not too bad, the worst being extreme diarrhoea due to cheamo and being high on steroids! The lovely nurses made the three week stay bearable and watching the Olympics all night!!!
I will be two years post transplant on Feb 14th 2020, it is by no means a cure but a recent MRI shows no progression in lesions and stable, my MS is all mobility related
I hope this is of interest to anyone looking to have this treatment in the UK, dont give up trying it can be a hard slog and if you feel your neuro is not on the ball then ask to be referred to one that is, my neuro at the time (I wont say where from only the South coast) did not even give me a yearly appointment
I would really love to hear from anyone else who’s been through this at Kings or due to have it done xx

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highlander
7 months ago

@loulou
I’m in the process of doing the same as you with the neurologist at least, but he is in partnership with Kings.
I’m glad it’s all heading in the right direction for you.


stumbler
7 months ago

@loulou , I’m too long in the tooth to be considered for such things. I just hope that this has halted your MS, so that you can work on recovering lost function.


seanachai
7 months ago

Congratulations LL…. it sounds like HSCT might be working for you and really glad to hear a PPMS HSCT story on here….

Its a very tough brave choice…. a dear friend is 8 months post and has ups an downs but on the whole nothing materially different…the first 6-18 months can be tough for lots of reasons given the treatment is essentially the same as skin cancer treatment (broadly)…

Halting is a miracle in my view…. any reversal defies positive words…

Halting while remyelination therapies continue to evolve is a good cocktail right now…. that said would love a reversal or cure any time soon…


cheryl118
4 months ago

@loulou Have any of your symptoms changed since HSCT? Better or worse? Do you symptomatically feel like progression has stopped?


loulou
4 months ago

Hi @cheryl118
I know for sure I am more alert I have much more energy and I have had 3 MRI’s since and all have showed no progression, I have PPMS
I am looking forward to my next one
I believe they are starting to do it as a paid for procedure in the UK soon,
I was the 60th person to have it done in This country in 10 years and apparently so my neurologist says they have done another 60 People in the last two years with good results
Only time will tell I guess with scans!
@seanachai I hope your friend is doing well
@highlander, all the best, Would love to chat, message me


stumbler
4 months ago

@loulou , I’m so pleased to read this. Long may your remission continue.


rel12
4 months ago

Hi @loulou – that is great to hear! I am glad this has been a positive outcome 🙂


cheryl118
4 months ago

@loulou Do you have any problems with walking or spasticity? Has this changed since HSCT? I have heard many people say that their walking and spasticity has worsened since HSCT. This concerns me, as these are my biggest issues.


dominics
4 months ago

@loulou – you can indeed pay for it – same team as the NHS – and across the river in the private London Bridge Hospital. A friend had it there at the beginning pf the year.

The small hitch is you need to come up with £90k. Something most of us don’t have tucked under the bed! They had a wealthy benefactor – lucky them!


itsmewithms
4 months ago

Good for you LouLou! I’m in the US and was moved to Ocrevus last fall. My mobility is still pretty good but I use a stick for walking anywhere I may get unbalanced or have to walk a distance. Just for safety.

@highlander – didn’t realize you were on this path – good luck! do you know when yet?


seanachai
3 months ago

Hi LouLou, she is still doing great, but the jury is still out… I have read some good papers talking about 2 yrs plus before you know where you are… its a tough procedure on the body. and takes time just to recover, let alone know a definitive outcome…

Ironically Fatigue is a common side effect of HSCT, for all HSCT patients not just MS, which is really confusing for people with MS post HSCT… and it can come immediately or months post…. which is disheartening for lots….. in fact sadly in some post HSCT it stays…. its not an MS side affect, its a HSCT side affect….

No new lesions, but that is not he best marker generally or PPMS…. no material change which is good….

Fingers crossed for all….

My blood boils at the finances involved in these things…. still….

I have RRMS and I too am getting close to a juncture on therapy… I dont have that money either….


loulou
3 months ago

Sorry @highlander my next MRI is in June
I have them 6 monthly
I wish you all the best with it do message me
@itsmewithms, no I don’t walk I wiz Around on a teeny-weeny off-road scooter I’m happier on that than In a wheelchair! I can weight bear but not walk although I could probably still do the walking bars
All I know is that post treatment I feel a lot stronger in myself
I would love to hear from anybody else going through it or due to x

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