I have highly active RRMS and have been on tysabri for the last 2 years. In that time I’ve had a few small relapses. Thankfully no major relapses. I am due to start lemtrada / alemutuzab. Because this treatment takes 5 consecutive days I need to go in to hospital on a sunday so that I can start it on a monday. The problem is that no single bed rooms are available and wont be so for next sunday neither. So unless an emergency comes in resulting in the hospital needing the extra beds, i am looking at starting lemtrada a week on sunday.
its already been 7 weeks since my last tysabri infusion. If the lemtrada gets delayed by a month it’ll have been 3 months since I last tried to treat my active ms. My major fear is that I relapse whilst waiting to start lemtrada. I could have another tysabri infusion that may require me to have another MRI scan prior to starting lemtrada, which will only cause further delay to me starting lemtrada.
what would you do? Are there any effective meds which will suppress my MS activity short term until I start lemtrada that I can ask my neuro to give to me in the interim period. I am very anxious about experiencing a relapse. For those thinking why dont I stay on tysabri- ive thought about it long and hard. Lemtrada offers me the hope of destroying my lymphocytes and the new lymphocytes which mature to behave themselves.
How frustrating for you. There you are with all the complicated and high-tech things set in place as a result (no doubt) of great effort on the part of your neurology team…and then the NHS falls down on the uncomplicated and low-tech matter of giving you a bed. That is beyond infuriating and in your case I would be climbing the walls too. All the fancy stuff in the world is no use if they don’t get the basics right!
I hope that you are very soon back on the right road.
Alison
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The neuros at the Barts blog seem to favour FIngolimod to stop relapses after Tysabri. So it might be a stop gap treatment?
there is also Multiple Sclerosis Research: Clinic Speak: switching from natalizumab to alemtuzumab.
I wouldnt start another dmt as I’m also waiting to start lemtrdada but as I was on fingolimod I need to wait 8 weeks it’s right frustrating! So I can imagine how u feel! R x
Ruby, what are your reasons for not starting another DMT? Its just the wait to start lemtrada is horrible. I wouldnt be at all surprised if it gets delayed further & I end up waiting longer. Im scared of having another relapse. Im already feeling weaker and much more tired than normal.
my neuro informs me that if I were to have another tysabri that the lemtrada would be delayed.
hi
UTIs seem to trigger a lot of relapses.
i’m on a maintenance dose of trimethoprim and i havent had a UTI since starting.
just mentioning this because it’s a simple measure.
good luck
carole x
I am due to start lemtrada / alemutuzab on August 15th and have been told that i will be able to come home every night once the daily infusion has been completed so i will have no need for a bed as it will be conducted in Oncology ward in the day unit, I am not sure if this is normal practise but i know of a couple of people in the area i live and this has been the same for them.
Hi guys, good luck on starting such an effective treatment for your MS, do you mind me asking which hospital you attend? Thanks.
Hi Omar - I had ‘proactive’ steroid infusions during my Tysabri washout period - 2 grams per month ‘instead of’ the Tysabri - perhaps your neurologist would consider a steroid dose to tide you over and reduce any inflammation in your system?