@Ahmed

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Ahmed

Lemtrada D Day

Hi Guys and girls, I am due to start my Lemtrada infusion on Monday (Finally!) I am gonna be treated as an outpatient and go home at the end of the day. Looking out for infections will be important For the Lemmies out there, did you do anything out of the ordinary before your infusion? Did you shave your hair? How long did you take of work? How much water did you you have to drink?

cherish

@cherish

Good luck young lad! Lisa ? ? xzx

Margarita

@Margarita

I just finished my first round yesterday. It was way easier than I expected except that I had to stay in, so I'm exhausted. Hospitals are no place for sleeping. I'm at least a few days from being fully functioning, wouldn't want to be right back to work, but again that's the lack of sleep. I followed the 2-3 litres of water advice from others here although no one at the hospital mentioned it to me before/during treatment - I brought it up and was just told, sure, why not stay hydrated. Other than the listeria issue, there were no specific recommendations re: infections either. Antibac spray and wipes are already proving useful though. I'm going to re-read my patient leaflet thing this afternoon, feeling a little like I missed an important memo somewhere. Might be worth you doing that before Monday - I wish I'd refreshed it all in my mind before I was zombified! Again though, you get to go home, so you won't have that problem.

Monica2015

@Monica2015

@ahmed, finally! No, no bald head is required, as the chemo does not affect hair follicles. This treatment is not strong enough to do so. Why are you not an inpatient? I had requested to be an outpatient as live 5 minutes away from the hostility but it was expressly prohibited! Lucky you... I agree with the advice as mentioned by @margarita and others, simply to drink as much water as possible to minimise headaches. I still experienced the rash on day 2 regardless, but no sickness (probably as eat like a horse) nor sickness. Do ensure you take meds as required. I attempted to be the martyr and paid heavily with the rash! Likewise, the antiviral drugs are important post treatment as shingles is not pretty! Other than that, good luck!

Monica2015

@Monica2015

I also agree that it was a breeze, so I'm sure you will be fine. Just take plenty of reading material.

PV04

@PV04

I am only 5 years into MS and was completely healthy when had Lemtrada in December. Overall it was pretty easy. I drank 2-3 litres of water a day which helped the drugs pass into me quicker. Bit of a rash from day 3 which they gave me more pills / injections for. I took public transport to and from the hospital every day. Once I got home, I was pretty tired and felt quite itchy but that passed after a couple of days. Only needed 2 days off work and was back down the gym a week later. Time & MRIs will tell if Lemtrada has worked.

Ahmed

@Ahmed

@cherish @george1234 Thanks, Yeah it will at the QE 45 min drive with traffic @monica2015 Actually I would have liked to be an inpatient. Saves time travelling from and to hospital. Thank God about not shaving though. @margarita I hope it went well for you. I have been sort of a hypochondriac the past few days. lol. Washing my hands every one hour or so. Just trying my best to put of any infection. The nurse told me about the water intake so I will be taking 2 large bottles before and during the infusion.

Ahmed

@Ahmed

@pv04 Wow, you are strong, I took 2 weeks off work !

Ahmed

@Ahmed

Did any of you notice considerable improvement after the infusion? My last relapse left some lingering symptoms on the left side of my body. I still have zero sensation on my left arm

Ahmed

@Ahmed

@orlando27 Thanks for the good luck wish. I am still in the early stages of my MS so I have no major complaints, yet! I can do with numbness and slight tremor or spasticity. If Lemtrada keeps this bitch on the sidelines and make it just nuisance, I am will more than happy. @monica2015 I got myself Stephen Hawking's ' A brief history of time'. I am hoping to be mind blown. But most likely I won't understand anything from it.

lilbird

@lilbird

Hi there @ahmed loads of luck this week! I just realised it's probably a bit late for this now but I was told I would be an outpatient if successful in getting Lemtrada & requested to be an inpatient instead, but I do have over a 2 hour drive each way so might have a stronger case. Still after reading @margarita's story maybe you're better off going home to your own bed :D

OhTheJoy

@OhTheJoy

good luck, yeah sleeping in a hospital is mission impossible :)

holly12345

@holly12345

Hi I had the treatment back in November as an inpatient. I had large dose IV steriods before the lemtrada infusion for the first 3 days. That all went okay. The 4th day no steriods and straight onto treatment and fairly quickly I had shortness of breath and came out in all over body rash. All very scary!!! They gave me a antihistamine which cleared it. Coming out from hospital in had a chest infection within a week which lasted a month. Apart from that I am okay, 2 blood tests since and all okay ? Back in a years time for 2nd lot yippee ?

TracyD

@TracyD

@Ahmed Answer : Did you shave your hair? - No lemtrada is NOT Chemotherapy, it's a monoclonal antibody which targets T & B Cells and destroys them, it does NOT wipe your whole immune system, it to NOT make all your hair fall out. I'm concerned that you are thinking it works in that way this close to treatment :-( How long did you take of work? - None, I worked from hospital during my treatment, worked from home the week after and then back to normal working in the office (although I did move into an area away from my colleagues How much water did you have to drink? - A minimum of 3 litres a day of plain water, this was started several weeks before treatment to give my body time to get used to the volume. I'm still drinking that amount 8.5 months post

sammyjo

@sammyjo

Just recently received this treatment and still waiting to see if it works iam having 2 weeks off work . How did you cope with the diet ?

TracyD

@TracyD

@sammyjo I was careful for the first few months, I'm a salad dodger anyway so that wasn't a problem - not being allowed rare steak however was painful ..... no way am I eating burnt meat so I avoided it until I couldn't bear to be without it any longer xx :-)

Ahmed

@Ahmed

First day out of they way! No real side effects, just fatigue @tracyd I was just double-checking about the hair, I am balding anyway (at 25 years!) so I was looking for an excuse to get rid of it lol. The nurse strongly adviced that I take a month off because I work with 100+ people. So there is a big chance of catching an infection. But I am just taking the 2 weeks @sammyjo I am looking to totally transform my diet. I started introducing Green veggies and seafood to my diet. I ate spinach for the first time yesterday Probably won't stick to it though

TracyD

@TracyD

@ahmed Lol about the hair, buzz cut then :-) xx

Monica2015

@Monica2015

@ahmed, Shame that you didn't manage to be an inpatient and me an out! Glad all going well. Just a quickie to advise you refrain from any raw seafood but check with your nurses, and raw garnishes etc due to risk of listeria.

lilbird

@lilbird

@ahmed glad to hear day one was straight forward hope you have another good day tomorrow & a good sleep tonight :D

sammyjo

@sammyjo

Hi . Iam already am a vegetarian so that helps with the meat issue. I also work in a school so I have to stay away for 2 weeks so I don't catch a infection. I am house bound for this week .

lilbird

@lilbird

Hi there @ahmed how are you getting on? I hope your week is going well :) how have you found the travelling?

Ahmed

@Ahmed

Hi @lilbird . Thanks for asking! Ohhh travelling was the least of my worries, I had what you call a delayed reaction to Lem. Part of the reason I was missing from this thread. First day went smooth, as well as half of the second day. But towards the end of the night my temperature soared and I had a bad rash from the neck down. I also couldn't eat anything without throwing up. That was when I realised it is a pretty powerful drug. I was in so much pain that I almost regretted choosing this treatment. Almost. Surprisingly it all went away on the 4th day (today). I am not trying to scare Lemtrada away from anyone. I am just saying, if you feel poorly, it is expected. You will get better sooner rather than later though, as your body gets used to the chemicals. My advice would be that you must take the added medication they give you to take home. Make sure you have paracetamol or ibuprofen nearby in case you need them BTW you might be entitled to free parking if you are an all day outpatient

lilbird

@lilbird

Hey there @ahmed :) how's thing post Lem? Hope they're looking up! xx

Ahmed

@Ahmed

Hi @lilbird. I recovered very well thanks. Better than expected. The persisting numbness I had before the treatment is still there. I hope it well go away in the next few months.

lilbird

@lilbird

Can't really remember what it was like pre numbness, I'd really like to get rid of that too. Glad you're doing well :)

silver

@silver

Hey @Ahmed, how are you doing man?