Hi
Just come home from my neurologist who has told me today that based on my latest MRI he believes I know have “highly active” RRMS. Symptoms relatively stable at present but have had a second attack recently and the MRI shows numerous new lesions, which all puts me in the highly active category.
I am getting a JC test done to see about starting Tsybari if I don’t have JC. I have also been offered Lemtrada and, as a backstop, Fingolimod (i.e. if I have got JC and don’t want to chance the possible risks for Lemtrada).
I have been reading up on all three but my head is spinning… thoughts?
It all feels quite scary 
TIA for any support & shared experiences
Angela x
Hi Angela
I cant really give you any advice, but thought I’d post with this link in case you’ve not seen it: MS Decisions aid | MS Trust
Best of luck with the decision. At least your neurologist is offering you the choice of some big guns with which to attack the beast.
Sue
Hi Angela,
I was diagnosed last year, have had nothing worse than numb toes for a few weeks and also have MRI results that flash up like Christmas trees. I opted for Lem as my first DMD - and received round 1 in August. The infusions were fine (headache and a rash felt with by anti-histamine and water) and I was back to work/ at the gym/ out running very quickly afterwards. No post infusion flare-ups or infections. Too early to tell whether I’ll get a longer term side effect (thyroid issue etc) but with the regular monitoring in confident any issues will be spotted early and managed. I have a scan in June to see how I’ve responded, but have certainly had no clinical issues to report. Round 2 in August and the. Hopefully I’m done for a wee while.
Lem isn’t for everyone, but for me it was the best chance of limiting further relapses, brain atrophy and risk of converting to SPMS until something better is found. The risk of the side effects was a price I was prepared to pay for this.
Happy to talk about my experience or answer questions. Resources I found very useful are:
-
lemtrada (alemtuzumab) treatment for MS in U.K. Facebook group (closed group - just message the admin and they will add you). Full of people in the UK who have had, are undergoing or thinking about Lem. A good place to see experiences both good and bad and find out about the different protocols in different hospitals
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davids campath journey - blog by a chap on the original campath/ lemtrada trial 12 or so years ago. Gave me hope when I was diagnosed
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Tracy’s lemtrada journey - very detailed blog by a lady who has just completed round 2 and is doing well
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shift MS forum- loads of people on there who have had Lem
Good luck in whatever you decide.
K x
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Well, the good news of the day is that your MS has flagged up its bad intentions before it has had a chance to do you much damage (or so I assume - my apologies of you have been in a lot of trouble already). So you now can now take steps to spike its guns - fast. And that really is good news.
I do sympathise. I’ve been on Tysabri for 6 years now. If I had made the switch as soon as the Avonex stopped working (after many stable years) rather than waiting-and-seeing while a few more relapses mugged me, I might have dodged a bullet or two and be less hampered than I am. But never mind: hindsight is a wonderful thing! And the good news for me is that Tysabri has calmed my very active MS down amazingly.
No one wants to be told that they have highly active RRMS. It is not a good thing to hear. But you really can take some comfort from the fact that the stronger DMDs can work amazingly well. No one wants to need them - but thank goodness they are there.
Good luck.
Alison
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Angela,
Easier said than done i know, but try not to get too spooked by your new reality. The uncertainty of your future remains the same as it ever was and not really any different to any of us (either carrying a painful diagnosis or not!)
From what you have said, you have a solid team of support of medical expertise who are pro-actively seeking out the best possible plan of attack. The choices you have to make are the best available to you and more options are quickly barreling down the pipeline.
Keep your chin up and allow yourself to feel hope not fear.
All the best; you are heading in the right direction!
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