@Carly

Last reply

Carly

Lemtrada - Tell me, tell me

Hello, So I found this website because I needed support. Meanwhile found help and this help decided to push me towards Lemtrada. I was reading a post a couple of weeks back about how Lemtrada changed that person's life, and how it helped others and how others are going to fight to get it. So QuestionSS: Lemtrada: yes or no? 2 or 3 rounds of treatments? Side effects - At the time of the infusion and after? Did it help? if yes in what way, if no in what way (what was suppose to change and has not) I'm on Tysabri, will go on Withdrawal, any suggestions? What can I do to get ready? Any other comments, suggestions are very welcome. I do know that this is not clinical advice and nothing is formal, it's just friendly advice between MSer's. Thanks! Carly

Stumbler

@Stumbler

@carly , here's some detail from our side of "the pond". http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada We have members, who have had this treatment and members, who want this treatment. In the UK, it has been approved, but we still seem to be waiting for it to be implemented. You could try searching the forum for previous discussions, using the forum search function (the magnifying glass, top left) and searching for Lemtrada. I'm sure there'll be some members along soon to share their firsthand knowledge.

US-Emma

@US-Emma

Lots of good questions. Lemtrada- definitely & soon 2-3 treatments: 2 then wait & see. If you are newly diagnosed the 2 could last 6-10 years. If have had MS longer you may need a dose 2-3 years after #2 Having Lem does not prevent you from using other meds down the line. I had Lem last April in Germany & blogged about it. Here are some specific blog pages to answer some more of you questions: What happens during the week of infusion/infusion side effects: http://lemtrada.blogspot.com/2015/01/considering-your-lemtrada-protocol.html Potential side effects after infusion: http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html Did it help there are many pages on the blog about various improvements: http://lemtrada.blogspot.com/2014/07/i-had-omg-moment-this-morning.html http://lemtrada.blogspot.com/2014/07/week-16-seeing-improvement-in-ambulation.html http://lemtrada.blogspot.com/2014/11/still-improving.html There are others, I just picked a few. Tysabri withdrawl is real. I was a Ty to Lem switch with +JCV titer and 6 years on Ty (so high risk PML). I had only six weeks between last dose of Ty & first foes of Lem. It would have been sooner (get as short an interval as you can, two weeks is common now) but I had to arrange travel to Germany. If you are JCV+ they will likely do a screening MRI during the switch period to check for PML, scan is clean, you get Lem. If you are JCV- an MRI is not needed. What can you do to get ready: get in the que (line, on the list, etc) for Lem & you docs will guide you. There are some blood tests, ect here are some of the basics they test for: http://lemtrada.blogspot.com/p/testing-required-recommended-prior-to.html Whew- I think that was all your questions. I am happy to answer more anytime :) Take care, Emma

Graham100

@Graham100

Think you need to ask your medical team if you can have it first. My MSnurse said not a chance.?? All I need to do now to get it is,, win lottery. lol

US-Emma

@US-Emma

@mbrsinc I was trying to PM you but couldn't get there from my tablet... How are you doing? Do you have a Lem date? I have a list of US centers who have gone through the Lem training & are infusing. Do you want it? Hope you are well, Emma

US-Emma

@US-Emma

@mbrsinc, There is one each in Cullman, Alabama and Franklin, TN. Are either of those close? I think if your neuro would refer you you would be able to get in right away. The Cullman site infuses 5+ at a time. There is one more site not on this list. http://lemtrada.blogspot.com/2015/02/centers-in-us-certified-to-infuse.html Maybe its the cold weather, ive had a hard week too There is a closed facebook group on Lem, Lemtrada for MS treatment, ask to join & post about additional,US infusion centers. Sorry you have been delayed. Emma

US-Emma

@US-Emma

Lemtrada ;) Seriously though, I think you have read my posts on distraction. In the winter on of my tricks is a heated matress pad. Also look into Thai Massage (assisted stretching, way different from Swedish) in your area, it will change your life. Medium Hot baths are good too. Have you ever done the combo Neurontin & Amitriptyline ? Good but very sedative. Also can give me hallucinations, but I have a low threshold for that after a terrible experience with SSRIs my neuro kept pushing on me. I'm not depressed! I have very valid MS grievances! Now I don't even have those :) Also try Zanaflex at bedtime. Baclofen never worked for me but Flexeril did. Prior to Lem I took: Clonazepam 3x/dy Flexeril 3x/dy Zanaflex 12mg at bedtime Now I just take Zanaflex 4mg at bedtime. I had this crazy goal of no more muscle relaxers after Lem when I realized I could cut back, but I still have still had this disease for 11.5 years and that was a silly goal, I'm reformed now :) Emma

US-Emma

@US-Emma

Is your friend in Franklin Jeana? Gosh our world is tiny if that's who I think it is! She is my hope to extend dose #2 out a few months. That is a huge problem with retention. I bet that gets in your way a lot. I function in a narrow range of "comfortable" getting hot or cold easily. I can't remember if you have thought about Rituxan, would that be an option? I know I would be right where you are, except for a trip to Germany last year. (Except my left side is worse). My husband and I have only been thankful for that trip- although a lot about it was hard. I really wish I could 'fix' everyone's access to Lem, access problems seem so unfair!

Stumbler

@Stumbler

@mbrsinc , retention can be managed by Intermittent self-catheterisation (ISC). It's a simple process and if it opens up other options, it may be worth considering.

US-Emma

@US-Emma

I need to check in with them again. Ava traveled with me in April 2014 to get Lem in Germany. I spoke with her around Christmas time. She was using a wheelchair or arm crutches in Germany. Now they have made their basement into a gym for her & are installing an infinity pool! She is in her early to mid 30s but has had an aggressive case of MS diagnosed in her teens when few meds were available. So her improvement to using a treadmill & swimming laps is incredible. Beth is in her early 60s. I have not spoken with her in a while. I will check in with her this week. I am leaving on a trip 2/26-3/10 and won't have Internet. So if you don't hear back from me quick that is why. How is your Lem hunt going?

TracyD

@TracyD

Thought that this might interest people. It's a diary of one of the original Lemtrada trial patients it starts in 2003 with the first treatment and is updated all the way through to 2015 :-) It makes me feel quite comfortable with the treatment I'm hoping to get soon xx http://www.davidscampathstory.org/experience.html

Carly

@Carly

Hey! So I got the ok! Lemtrada it is :) All the tests are started and should receive my infusion within 8 weeks, as I got my last Ty infusion Tuesday last week and I just caught my son's cold :( Dodge the hubby's but can't say no to a sick kiddo that just wants to cuddle. I'm so excited and nervous at the same time. If any of you have tips for me, my family and for the kids, they would be welcome. All the stuff the nurses tell you are fine, but people that went through it are always in the best position to give you advice. Will let you know when I know more, A very excited Carly

US-Emma

@US-Emma

@carly, What exciting news! I had Lemtrada in April 2014 and would be happy to help. Te blog I have been writing has a lot of topics including preparation : http://lemtrada.blogspot.com/2015/01/considering-your-lemtrada-protocol.html And http://lemtrada.blogspot.com/2014/12/pre-lemtrada-to-do-list.html When do you start? I will say to start increasing you water intake about 3-4 days ahead and see if you can add a few glasses a day to get up to 2-3 Liters a day and the maintain that through the infusions. This is a lot but will really help your body deal with the drug and help avoid a lot of the side effects during that week. It is a fee, easy way to make your week go smoother, except for all the loo trips touting an IV pole! Maybe you should start a new thread with this info to get help from others :) There is a closed Facebook group (meaning you have to ask to join & then all your posts are only seen by group members, not all your contacts) called "Lemtrada for MS treatment" many people on there have had Lem or are just having it now. People there are Very willing to help answer questions and there are a lot of back posts you might want to read with other peoples experiences. So happy for you! Please let us know how the process goes!