Last reply 1 month ago
Lemtrada

Hi y’all… so my lemtrada is getting closer just waiting for a test result to come back and I am going in 😨… just wanting tips/advice ….how did you find it, how did you feel …any reactions etc ? Xx

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uma-catlady
1 year ago

best of luck with your infusion ..


uma-catlady
1 year ago

Hi all
thanks for your positive comments and the video .. thats really useful ..

I am wondering if lemtrada increased your tiredness. I have increased tiredness, muscle spasms and pain since last year and my ability of physical activity has decreased by the third. I dont know if this is the disease which has made the difference or whether I should blame the drug
I was given lemtrada 5 months after my diagnosis. I had symptoms slowly getting worse for 2 yrs though.
I still have days when I cant get up and go to work as I am too tired, too much spasm and dizziness … my ms nurse calls them days of symptom exacerbation .. is this normal in the disease – do any of you have them as well? how do you manage work around it?
really need some tips …
thanks for all the support. It is really helping me
I think I am still new to the disease process and still learning …


zenkai
1 year ago

Hey leanne12, I just had lem 1 1/2 weeks ago so far so good I got shingles now easily maintained a pill twice a day, advice bring something to occupy yourself you’ll be there for hrs, something to put over yourself for warmth, drink alot of water for 4 days before starting lemtrada (hydration is the key) and bed rest is crucial, good luck with lemtrada leanne12 all the best 😊


imahsillygirl
1 year ago

Hi Leanne12,
I’ve just been through my second Lemtrada Infusions after a year break from the 5 -day first infusion week. How nice that has been! No relapses. No treatments. It’s just been..super nice. πŸ™‚
The infusions themselves, depending on your experience with infusions or tests can/will vary. I find infusions and blood tests more like a routine thing after ~20 years on a different MS medications so…

Firstly, dress comfortably! It’s a long day (days) and you want to be as comfy as possible. Take your “supportive” medications with you so you have them if/when you need them. I took Motrin, benadryl and my pain pills-I used them all.

Secondly, water is a serious, serious essential! Drink, drink, drink. I drank LITRES of water at least three days leading up to infusions. At least three. More is even better, I hear. The day of the infusion, don’t stop drinking water either!

Make sure you eat regular meals up to, during and after infusions. Try to think ahead about food to have around to snack on or eat for meals because you may not feel like thinking about it later.

I got, both sets, pretty bad acid stomach. They gave me, in addition to the 50mg of Benedryl, 1000mg of Solumedrol, a small iv bag with Pepcid. I never got nauseous but I did get warm/hot on both occasions. The second time I brought a USB powered little fan which worked out AWESOME. I highly recommend that. πŸ˜€

I also recommend Cinnamon Jolly Ranchers or some other type of really strong candy/mint to help with the taste while you are getting the Solumedrol.

Don’t forget your supportive meds AFTER your infusion! They can make your nights so much better/easier. Motrin (anti-inflammatory), Benadryl, and Ranitidine (or some similar anti-acid). You might realize you are feeling junky, not know why, but you could be having an inflammatory, histamine response and these things will help.

I was lucky not to have the rash, but one of my other infusion -mates did. She was VERY uncomfortable. It was all up her back and it hurt to lie down. There is something that I saw to get on here, “Anti Monkey-Butt” I think I got some off of Amazon but never needed it. I was glad I had it just in case though!

Don’t forget to KEEP DRINKING WATER after the infusion. For some reason, it seems to make you more prone to getting bladder infections. I’ve had several since the first round, but the more I drink, the less it happens. Be aware as well. Mine weren’t “normal” bladder infections. I had no pain, mainly just an urgency to go-which I have normally because of the MS so…LOLOL so fun!

OH! Last thing!! A comfy blanket, andI brought my pillow, earplugs and a sleep mask. I slept quite a bit. Best of luck to you ! <3


milli
1 month ago

@imahsillygirl and @leanne12 hi,

You have given such wonderful advice on getting started with Lemtrada. Thank you so much. I think I will be going on this treatment soon. Was deciding between Occrevus and Alemtuzumab (Lemtrada) but getting much drawn towards Lemtrada after reading ms shift blogs and your information.

Could you kindly tell me if you have had any of the thyroid or blood ITP side effects and if it was very hard to make this decision for taking this DMT? any advice highly appreciated.

Thank you again :0)


imahsillygirl
1 month ago

Hi Milli, I can tell you that I have, within the past 2-3 months, developed Thyroid issues. πŸ™ Honestly, that was one of my biggest fears so I’m pretty bummed. I have also developed gall stones but I cannot say that is at all related to the Lem. I still get my monthly blood and urine reports, they are obviously super important so you can keep your finger on the pulse (so to speak) of what’s really going on in your body.
As to your other question, It was pretty easy for me to choose Lemtrada. I was diagnosed in 2000 and having been through more than enough relapses, I *couldn’t wait* to start Lem. My first course was in December 2016 and I have been (fingers crossed) relapse free since. I had already tried all the DMTs (available at that time, there are so many more now) and none had been able to stabilize my MS; continual new relapses were effecting my quality of life and I needed something new.
Knowing my situation now, with the completely undesirable Thyroid issue (which is currently untreated due to some other crappy life crap), it’s easy for me to say I would look at ALL the available DMTs and their trial numbers. Lems numbers were so impressive it was a no-brainer for me, even with ALL the potential side effects. My family all say that I’m doing well and my Mom tells everyone, “she’s cured!” LOL BUT, Just like before Lem, some days are definitely better than others, my memory and brain fog are alive and well, but I can feel my feet, I can see out of my eyes and the words I want to come out of my mouth usually come out as planned. I still have leg weakness but I can walk and that’s a beautiful thing. Feel free to ask any other questions if you have them. <3 Amee


leanne12
1 month ago

@milli … hi there😊.. I’m now 5 months post round 2 and can honestly say lemtrada was the best decision I made…. I am only coming up to 2 years diagnosed but now can say there some days go by that I don’t think about my m.s….don’t get me wrong my walking is quite crap after a certain distance but I still think I’m improving . life is good. I thought the lemtrada infusions were a doddle as long as you rest drink plenty of water and look after yourself you will be fine. P.s all my monthly bloods have been fine since and my latest mri after Lem round 1 showed no new activity. Good luck with your decision. Here if you need to chat xxx


milli
1 month ago

@imahsillygirl and @leanne12, I can’t thank you both enough for your kindness to share your views and your advice.

I just wrote to my MS nurse today confirming of my decision to go ahead with lemtrada as my DMT choice and a lot of this decision has been from reading your blogs and touching base with lovely people in shift-ms that kindly have taken time to reply to my questions.

Thank you all massively, and I wish you and wish us all, a positive journey ahead together. Bring it on 2019 πŸ€—πŸ’•πŸ’—

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