Last reply 3 years ago
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

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
3 years ago

@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.


Anonymous
3 years ago

I had Tysabri withdrawal syndrome before it was well known. It was probably my worst relapse and caused my situation to regress significantly until I was fortunate enough to get in a tecfidera (BG-12) trial. I am finally going to get Lemtrada after trying for over 2 years. I highly recommend that you do everything possible to prevent tysabri withdrawal and if possible go directly to lemtrada. Best of luck!


us-emma
3 years ago

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
3 years ago

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


Anonymous
3 years ago

I felt great when I came off Ty. Third month got hit hard with withdrawal. IMO:Try to avoid at all cost! Be sure to be on either Ty or Lem if you quit to avoid withdrawal. Lem was approved as first line treatment in UK and third line treatment in US. Trials supported that Lem most effective given sooner rather than later after DX but definitely still effective later. Approximately 80% of trial patients required no further treatment during 5 year test period. This is unprecedented and is a major factor in my decision to switch to Lem. No more continuous dosing and SEs associated with other DMDs. Taking Lem does not preclude taking other DMDs (for example, if you fail lem or if something new comes along).


us-emma
3 years ago

@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


Anonymous
3 years ago

@us-emma Hi, Unfortunately, I am not well. My neuropathy took a sudden turn for the worse. I believe to be a relapse. My neuro practice is quite large and decided only 2 neuros would be lem certified. I had to change docs as a result and because their state of the art infusion ctr doesn’t want to infuse Lem, they rescheduled me to late March just to see doc. Frustrating, especially since I am so sick. They have close ties to a huge Biogen 10 mins away. Does your list have sites in the southeast? (Record snow has not helped)


us-emma
3 years ago

@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


Anonymous
3 years ago

@ US-Emma Thanks! Both of those sites I am familiar with as they each are headed by a lem research investigator. That is why they are early adopters. I appreciate the list and may end up using it, but my neuros have never had trouble getting my treatments paid for from my insurer. I hate to upset that situation. You definitely know how important that is for this expensive drug! I will unfortunately have to play this hand out for now. If you have any ideas about helping neuro pain other than gaba, pregaba, and ultram, plz advise! Thanks again!!


Anonymous
3 years ago

@us-emma I am familiar with the TNN site. I applied and missed out on trial there. My RN friend gets treated there. The Al site has been written about as first in the nation. That neuro’s Mom died of MS. He is very dedicated and would be a good choice. Both are good choices. I would be glad to fly to either as plan B.


us-emma
3 years ago

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


Anonymous
3 years ago

@us-emma I have read and believe your posts. I am really struggling to get out due to pain and anxiety. This weather really hits me hard. It exacerbates all of my deficits. This is a new level of pain for me. It is like shingles on steroids (no pun) that pops up anywhere anytime on my right side. I turn into a painful statue. Your suggestions that involve heat don’t seem plausible to me. I am almost totally heat intolerant and go to great measures to prevent. Zanaflex never worked for me. Thankfully I can pop a half of 10mg baclofen every 4 hours and not get too weak. Can still ambulate. I did give up the ampyra to try to help reduce the neuropathy, but gives me foot drop and makes me weaker. I did klonopin before I was dx’d. GP actually thought I was having a bad reaction to it and I thought the drug withdrawal was awful. It was. I was removing the one thing that he gave me that helped MS. Bad times!

I am excited to hear that you needed that stuff and then after lem got rid of. I have been dx’d for 9.3 years and hopefully the meds I have had give lem a chance to help. I wish I could have stayed on Ty like you. Thanks for your thoughtful suggestions and web postings. 🙂


Anonymous
3 years ago

@us-emma Forgot key problem. Cannot take anything that causes urinary retention. Seems like all of tricylics and SSRIs are problematic.


us-emma
3 years ago

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!


Anonymous
3 years ago

My friend Lisa has to travel a couple of hours to get there. Lem gave her a remarkable recovery ; but major improvements did not appear until after 2 years!

I have had a horrible experience with docs and will spare you the details; but now my file is being transferred to another guy that is new to the practice and one of 2 that are suppose to handle lem patients. So I am in between docs and Rituxan is probably not an option. I have researched every drug that I have received. I email an RN with requests for these RXs and have tried several and combos of them to figure out what will work for me. I have had an aggressive case and this has been a tough road!

Retention is a HUGE problem. It is my major concern in selection of drugs. Bladder problems were my MS’s first calling card and a nasty lasting one. I have transitioned from cold AND heat intolerance. I don’t sweat anymore and I shiver like crazy when it gets much cooler than room temp.

Access is only going to get worse here and is yet another reason I want Lem. I am hoping it has lasting effect if I get it and will not have to worry so much about so many expensive drugs. I have been shocked to learn on this blog of the access problems in countries where I read that it was readily available months ago. I certainly hope that they straighten it out soon!


Anonymous
3 years ago

BTW, I have enough MS grievances for the both of us!


stumbler
3 years ago

@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.


Anonymous
3 years ago

I agree and it was a logical step I tried and it was not an experience I was prepared to accept unless absolutely necessary. I have talked to those that do it and it was great for them. I have dealt with so many things that I am holding on to anything normal that I can. I could have given up this fight long ago and thus far glad I didn’t. Thanks for the suggestion!


Anonymous
3 years ago

@stumbler Pain is always a factor where my bladder is concerned. The cath is a different temp manageable pain. I control chronic bladder pain with neurontin every 4 hours. The retention causing drugs exacerbate that pain to intolerable levels. You can file that knowledge away as little known facts about MS that you will never need! 🙂


Anonymous
3 years ago

@us-emma Can you tell me how your older friends that traveled offshore to get Lemtrada are faring? The best that I have been able to determine is that they had benefits, but at slower rates. Have they continued to benefit, and based on everything that you know, would you say that they made the right decision to get Lemtrada even considering their age and time lapsed since DXd? Thanks in advance!


us-emma
3 years ago

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?


Anonymous
3 years ago

I am sticking with my March date to hopefully get the process started. I have been absolutely miserable with peripheral neuropathy and severe weakness. I feel like I am holding on to the stern of the Titanic! I read the web looking for a glimpse of hope. My friend in Tenn who has Dr. Hunter says she was suffering like I am before Lem, and is confident I will benefit. I will hold on longer! Thanks for any updates.


tracyd
3 years ago

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
3 years ago

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
3 years ago

@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!

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.