Last reply 1 year ago
Stressed

Hi. I’m stressing about my upcoming Lemtrada treatment on Monday. I was at peace with my decision when I finally made it about six months ago but after speaking with the MS one to one nurse yesterday I started to get anxious and scared. I think maybe because it’s becoming real now and I’m afraid of how I will do. I reached out to my family and voiced my fears and anxiety but ended up upsetting my mom in the process. She looked up the possible side effects and scared herself. Soooo….that back fired. I ended up feeling bad that I upset her rather than getting comfort and reassurance. Even my husband doesn’t know how to support me. He tries and says things like “it’ll be ok”. So I feel the need to reach out to fellow MSers and just have a safe place to say “I’m scared and worried”. I don’t like upsetting my family so end up feeling alone. Thanks for listening.

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Anonymous
1 year ago

well we both had that kind of day today then 🙂
I actually started on Gabapentin today (three days later than it should have been, because I was bottling it)
& reading google for side effects is alway really, really scary
“the side effects include; drowsyness, monkeys falling out you butt, limbs dropping off, oh & death”
it’s all arse covering by the pharma’s

You’ve basically just asked on here who’s on it? & how is it?
they’re a good bunch you’ll get the truth. if you get no replies nudge ’em again

TTFN


mmhhpp
1 year ago

Is gabapentin good for spascitisy tog1? Xx


sandwich
1 year ago

Hello

I’ve had lemtrada and both rounds went without issue. I was back at work within a week and apart from feeling tired and having a lingering rash for a few days felt no different at all. You are monitored throughout and the nurses will stop / slow the infusions if they have any concerns. Perhaps give your nurse a call to talk things through tomorrow before Monday? There are potential infusion reaction side effects and the longer term risks. Nothing comes free with MS though.


clare80
1 year ago

Hi @starla, I had lemtrada round 1 in August and so far so good. I think its normal to feel anxious beforehand, as however much of a briefing you get from the nurses you still don’t know exactly how it is going to be for you. As you say, it is one thing to make the decision to have it, but it all gets a bit daunting when something that seemed so far off is suddenly right ahead of you.
Try and have a chilled weekend and plan something nice to do so that you are distracted. If your mind keeps mulling over the potential side effects, then try and go back to that place you were in 6 months ago and remind yourself of all the reasons why you decided this is the treatment for you.
I don’t know where you are having the treatment (mine was at Addenbrookes in Cambridge UK) but I’m sure you will be in good hands. They monitor you like a hawk during the treatment itself and then with the monthly blood tests for the next 5 years. I have to say I am just grateful to all the people who did the trials, they were really brave and it is thanks to them that the drs and nurses know what to look out for with us in terms of potential side effects. It is scary, but personally, I decided it is less scary than the unpredictable progress of MS. Better the devil you (sort of) know and all that! Sounds like you have family and friends on standby to support you and I’m sure you’ll feel better about it all once you have got day one under your belt. I’ve tried sending a friend request (not sure if it has worked!) in case you want to chat about it over the weekend. Cx


northwood28
1 year ago

Hi @starla, i had my first round of Lemtrada in December and did not have any nasty side effects. I feel so much better now, although still feel fatigued 6 weeks later but am getting stronger each day. I did have a respiratory infection and haf to be afmitted to hospital for IV antibiotics for 24 hours but am much better now. Had my first round of monitoring tests- all good.
The nurses were great in hospital, very caring and understanding.
An sure you will be in good hands on Monday- the anxiety is normal and i agree with @clare80 that once you have day one under your belt, you will feel better.
Take care xx


tishtash
1 year ago

Hey, I just had Lemtrada 4 weeks ago and I am on the up and up. Its nothing to be worried about. the first week after the hospital was hard but you start to feel yourself after a week or so. I spent my time in hospital making a video diary and have continued it since if you’d like to check it out https://www.youtube.com/channel/UCyoNRfgoCEaoyr0PMG6sf0Q


starla
1 year ago

Thanks all for the kind words and advice. You were all very helpful. And tog1 thanks for the big laugh you gave me. Love the monkeys comment. Lol!

I’m trying to focus on the long term and why I chose Lemtrada. I’m feeling better already. Just had to have my moment and work thru it. Thanks again!


Anonymous
1 year ago

Just remeber MS is all in your head,
occassionaly in your spine, sometimes nerve endings

but mainly it’s in your head


Anonymous
1 year ago

@mmhhpp
I have no idea what Gabapentin is good for 🙂
but I’ll let you know what it does or doesn’t do for me


feeblefee
1 year ago

Hey @tog1 ?
Even though I’ve just been diagnosed I do know about gabbapentin, I was on it for years and years and years I was given it for nerve pain after a really bad car accident ? anyways it worked really well for my nerve pain I was on quite a high dose tho if I remember it was 3x300mgs a day worked a treat didn’t have any side effects initially but did end up having seizures the doctor still doesn’t know why but just something to keep in mind as it doseage increases ?

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