joanne46 19/01/18
Last reply 4 months ago
Lemtrada 8 weeks post round 1

Hi peopleI. i hope you are having a good year so far….๐Ÿค— Iโ€™m so sorry to be a pain but Iโ€™m panicking a bit as itโ€™s now 8 weeks since my lemtrada and I still donโ€™t feel as strong as I did before I went in…is this normal or is it that the treatment just hasn’t worked? My walking/balance are not as good as before my treatment and my stamina is way behind what is was……Iโ€™m trying so hard to remain positive as I am newly diagnosed (September) and started lemtrada in November so I have hit it really fast and maybe the fact that I am 47 means my recovery time is just slower….or had it just not worked…..any thoughts would be really appreciated ๐Ÿ˜Š

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tracyd
6 months ago

@joanne46

Congrats on having the treatment xx

Next question I guess is how have you been sleeping ? Steroids can play merry hell with the quality of sleep, for me it’s like it’s not ‘real’ sleep, I woke more tired than I went to be and in between I had the maddest dreams which I always remembered (like the one just before you wake up – but these were all through the night)

When I’m tired everything amplifies in regard to MS symptoms, I’ve been disease inactive for nearly 3 years and when I get tired, everything goes numb, my balance disappears completely, foot drop starts, my eyes go on the frisk … the whole lot all at once

Are you still drinking lots of water to flush the dead T&B cells out along with the steroids ?

If you need someone to talk to drop me a PM, I’m happy to share contact details xx


joanne46
6 months ago

Hi Tracy
Thank you for your reply. I would love to talk to you…I know how well you have done on your treatment…xx


holly12345
6 months ago

@joanne46

Hi there
I had my 1st lemtrada Nov 2015 then 2nd lot Nov 2016, I’m 43. To be honest I think it’s quite common to perhaps not feel improvements quickly. It absolutely knocked me for 6 and I felt rubbish for what felt ages. Now I’ve had the two I am so much better with my MS ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
Rebecca x


marcyg921
6 months ago

Always remember with Lemtrada, its not there to make you feel better but to stop MS from making you worse. That being said, there is no set length of when you start to feel better from this treatment but that doesn’t mean it hasn’t worked. Lemtrada is a powerful drug that really puts your body through a lot and even though you may not feel it, things have happened to your body that it takes time to recover from. I’m getting set for Round 2 in 2 weeks but when I had Round 1 it did take a while for me to feel the improvements (about 3 months) but you also need to help your body with the journey. Rest when you need to, try doing little things each day to help you get stronger like for your balance I started standing on one leg a few times each day and honestly it helped me so much. Hope things pick up for you soon, it really is a great treatment just takes time to recover from it.


joanne46
6 months ago

@holly12345
And
@marcyg921

Thank you both so much for your reassurance, Iโ€™m just going to have to be patient ๐Ÿ™„ and work on my balance…
Have a great week end x


highflyingbird
5 months ago

joanne46 hope your well. i am also i am 8 weeks post lemtrada round 1 and feel the same weaker and walking balance is not as good a pre treatment. Now this is normal and it could take some time for things to kick in. I agree it is very hard to satay positive and when you feel your body struggling worse than before treatment you do panic but that is human nature we all do even the monk on the mountain top (even though he may not admit it)
try keeping active and if your like me and struggle with walking and balance issues i am talking about mind because i feel its 80%mind 20% body. keep your mind active with something anything to keep the thoughts at a good level. i enjoy reading motivational books and looking at funny films….
look its not easy but it helps and i bet in time you will be fine healthy and well. you will look back on this as a part of the journey. it takes time and patience so keep well and look forward to the recovery…….its very important to look forward in a positive frame of mind and thats not just me talking science can show you proof on power of intention…..just look it up…
if you want to keep in touch with progress of our treatment feel free to get in touch

stay strong my friend……….


noelie
5 months ago

@joanne46

you’ve only done half the treatment, there is 2 rounds for a reason ๐Ÿ™‚
as mentioned above, you need to do your bit as well, sleep well, eat well, gentle exercise (have you seen a physio? the MS gym on YouTube is great), don’t stress: meditate.

I was disappointed after R1 as I was expecting to walk out symptoms free but my walking has been terrible, crushing fatigue, but no more relapses. Now I’m 3 months post R2, and after struggling for 2 years, it feels like there is some improvement at last (note I’m also signed off work for a bit, so finally resting).

Patience and don’t give up ๐Ÿ™‚


joanne46
5 months ago

@flyinghighbird thank you for that I would love us to exchange updates have Pm you and
@noelie I hope I donโ€™t have to wait until round 2 but if i do and it pays off then so be it xx

Thank you both


bethyannelies
4 months ago

Hiya,

I was just wondering how you were doing now?

I hope you’ve begun to see some improvements โ˜บ

Beth


joanne46
4 months ago

Hi @bethyannelies
Thank you for asking…I am feeling a lot stronger now thank you…was a bit tired and unwell up until about a week ago and developed a cold sore so I think I must have picked up some sort of virus….also a new very mild symptom has developed in my arm (mild tingling) which Iโ€™m hoping isnโ€™t a relapse! But apart from that Iโ€™m definetly now starting to feel better…no real improvements from before my treatment unfortunately but I think the recovery is starting to feel a lot easier x

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