Last reply 3 years ago
Tysabri&lemtrada. Turning down treatment

Hi all, Just checking this site out properly for the first time. Hoping it will help to discuss things with other msers rather than feel kind of isolated with my condition. I also have a decision to make regarding treatment which talking about with others might help.

I’m on gilenya which is not working so my neuro an ms nurse want me to switch to tysabri or lemtrada. I’m a pretty healthy 29 year old, although I relapse once a year with drop foot, fatigue, altered sensation for like 6 weeks or so then go back to baseline. My only residing symptoms are a bit of numbness tingling and a bit of drop foot after long walks. So.. I’m thinking, do i really want to move onto these pretty hardcore drugs with risks and side effects when in my eyes I’m doing ok? I think I will stick it out and carry on taking gilenya or no treatment and try to focus more on healthy eating, exercise and meditation.Does anyone else take this approach?

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us-emma
3 years ago

The evidence is pretty overwhelming with MS- your ‘bit of this’ and ‘touch of that’ will worsen exponentially into irreversible damage in just a few years. At first the disease will eat away at compensatory mechanisms in you brain- basically the brain’s back up system.

Once these are severely damaged the result of the damage starts to break through into function, ie you MS attacks.

Just like brain damage by drugs, alcohol or traumatic brain injury these changes are permanent & disabling.

I agree Gilenya is not working for you and your disease is breaking through on this treatment.

I would encourage you to look into the stronger treatments offered to you. Tysabri is only 12 days of treatment a year. Lemtrada is 8 days of treatment you entire life.

Thee therapies, especially the latter, have the potential to let you live a normal life without foot drop, bladder incontinence, fatigue, memory problems, muscle pain, wheelchairs to name a few.

There are a few risks (less with Lemtrada in my opinion, having taken both) but the risks should be evaluated in the context of the very real damage MS cause without treatment, which in my experience is much worse.

I do apologize if this sounds harsh, I don’t mean it that way. You are at such a critical juncture I wanted to be honest about choices & what MS is really like.

Take care,
Emma


stumbler
3 years ago

The MS Blog of Barts in London is good place to look at current thinking of MS (http://multiple-sclerosis-research.blogspot.com/).

They compared Lemtrada with Tysabri. Their results are here :- http://image.slidesharecdn.com/nzvsaz-140815040728-phpapp02/95/natalizumab-vs-alemtuzumab-1-638.jpg?cb=1408093678


graham100
3 years ago

Hi us-Emma has lemtrada made a big difference to you’re life?? Not being rude, just wondering if you know it’s made a huge difference rather than that’s what they say. Only because I don’t know anyone that really actually knows. If you ask will this help me? The answer is everyone is different so it might. Hmmmmm. Confused.com. Lol


graham100
3 years ago

Ps. I asked about it. Couldn’t even get an answer.


us-emma
3 years ago

Lemtrada has made a huge difference in my life.

In January 2014 I had been diagnosed for 10.5 years and had been taking Tysabri for 6-7 year. I considered it the strongest therapy available and was dismayed when my PML risk came back extremely high. My neurologist refused to continue to provide the therapy.

I was distraught. I am a medical provider in the US and well aware of the dismal effectiveness of the interferons and copaxone. I had already failed Gilenya (which was tried for a year in 2012 when my risk of PML was getting high- I had several relapses).

By that time MS had ravaged my life. I had lost my career in medicine due to fatigue and concern I might prescribe medications incorrectly and harm a patient with a drug intervention or side effect. I subsequently went into HIV (my specialty) Research but after a year was unable to handle that due to fatigue. I worked from home briefly setting up medical clinics for a major corporation but the travel required was not feasible.

In 2007 I began working in dental billing and eventually was only able to work a few hours a day- and from home.

Things I had lost to MS by January 2014:
Ability to see at night
Ability to drive safely
Ability to shop for myself even using a motorized cart
Ability to attend more than one social outing (a dinner for example) per week
Ability to shower and get ready on my own
Ability to cook for myself
Ability to clean or do laundry

The list could go on and on. In addition I was taking
6 muscle relaxers
1 medicine for sleep
2 medications for energy
1 medication for stress
2 medications for nerve pain
2 medications for body pain- non-marcotic
1 narcotic pain medication

And those are just what I can remember.

So in January 2014, I was extremely upset that I had lost so much and now there were no other drug options for me. The US FDA denied the patent for Lemtrada in the US. I did not know much about the drug at the time but did some research and learned this might be the ‘next best’ thing to Tysabri.

So my husband and I made plans and traveled to Germany in April 2014 for Lemtrada.

My life is completely changed now. The day by day posting of what life is like is posted on a blog- lemtrada.blogspot.co.us (or in the US lemtrada.blogspot.com)

By July 2014 my MS had not only stabilized- things were improving!

I now work full time. I can drive and see at night again! I can shop for my own groceries without any assistance. I discarded all but 3 tablets of those medications listed above. I sleep well without aids of any kind.

Today I went to the gym (working out with weights now in addition to cardio), went out to lunch with a friend, did some light shopping and tonight will attend a party.

I would not have been able to contemplate such activity 12 months ago! Further my daily constant pain and muscle spasms are GONE. If you want the whole story the blog is best for that.

I did not expect this to happen on Lemtrada. I was only looking for the ‘next best thing’ to hold the onslaught of MS disease at bay- I found something that is turning back the tables on MS. When does that ever happen for us? NEVER!

This medication works best for those early in the disease and at 10.5yrs diagnosed I was beyond the time Neurologist thought this drug would have dramatic effects. Reaching out to you @schjo was important to me. If Lemtrada had been available when I was diagnosed at 29 my whole life would be different now. I would still be working and helping those living with HIV and following the heart- patient education and medical treatment. This hope is now AVAILABLE to those in your position- to hault all the **** MS brings into your life and live the life you want to live.

I am happy to review the side effect profile of Lemtrada but know I have written too much already. It is summed up here: http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html But if you have a question about the risks of Lemtrada or Tysabri I am happy to review them.

I wish no one had to ‘have MS’- but maybe with early treatment with Lemtrada, you dont!


schjo
3 years ago

Hi Emma,

Thanks for your response. It doesn’t sound harsh. I will read the links you’ve posted.
I have heard many positive things about lemtrada but I need to know more about the side effects. I will look these up. I also don’t know if I can commit to having blood tests once a month for the next five years! I don’t even know if I’ll want to be in London or the UK in the next five years as I want to travel. I just feel so restricted by these drug choices and cant seem to get my head around the possible prognosis if I don’t continue with treatment.


Anonymous
3 years ago

I’d rather be having blood tests and walking in 5 years time than no tests and stuck in the house. No way to know for sure either way of course but I think you’d be taking a gamble.


kirstyscotland8
3 years ago

@schjo, are you JCV positive? Like that is definitely a thing to find out before making your decision. I am JCV positive but my something something count is so low that my chances of PML are minuscule. Tysabri is my best friend and I am really happy on it, despite having been drug free before. It only really disrupts one day of your month and on that day you get to stay off work and stuff your face full of food (Calories don’t count on days with hospital appointments).


schjo
3 years ago

@kirstyscotland8 I haven’t had the test yet but will have it at my next appointment on 10th Feb.

of course that makes it sound quite appealing but I’m not sure I would get the whole day off! lol

The thing with tysabri even if i was a low risk of pml the status can change over use and then I would have to stop treatment anyway..

I do want to travel so I would have to stop treatment for 6 months – 1 year whilst I am abroad as well.


suemsspouse
3 years ago

I hope Lemtrada works as well for my husband who was diagnosed 20 years ago as it has for Emma. Coventry just denied approval saying it is experimental and was not a covered benefit. We are so discouraged. Everyday my husband is going downhill and our insurance plan wants him to keep getting worse because they don’t want to spend the money. We will keep fighting for approval since we all know Lemtrada was FDA approved. I know eventually he will get it but everyday seems to make a difference right now.


us-emma
3 years ago

@suemsspouse are you in the US? If so I may have a way to help with insurance approval. If you are not in the US sorry I can’t help.

I had trouble with my Tysabri approval when I switched ins a few years ago. The trick is to go through the rigmarole with the approval department and then ask to speak with a supervisor.

Tell them their action (or inaction) “this delay (or denial) has put my husband Out Of Compliance with his treatment protocol as dictated by his neurologist” or something to that effect, but use the terms “Out Of Compliance” this has a legal meaning to insurance companies and I have seen it magically work when used.

If it does work for you I would like to hear your results so I can let others know if this is still working (or whatever does work).

You might give the neuro a heads up that you plan to appeal using this terminology. In case they call him he can back you up.

Good Luck,
Emma


suemsspouse
3 years ago

Hi Emma. Thank you so much for your response. Your information and your blog have been so helpful. Your story is giving us hope that lemtrada can potentially reverse some symptoms my husband has and can allow him to have a better quality of life again! My husband said he would love to call you. Please let me know if you would be ok with that and I can send you a private email with his info. Thank you.


justjon
3 years ago

There’s so much advice out there and it’s really hard to find the right answers. However the next phase of drugs will hopefully stop any disability progression and enable you to go travelling without a stick or chair. Side effects V’s disability? I’ll take the sides lol


us-emma
3 years ago

@suemsspouse I sent you a private message.

Emma


katfight
3 years ago

@us-emma if this is the drug to use why is everyone not on it? I have read some of your post for the past fe months and I have been really eager to learn and hear more. I just don’t understand why everyone is not put on this. Please help, why are we all not on it? I am sick of reading stuff I don’t really understand so I’ve gave up lol x


us-emma
3 years ago

@catfight,

One of the reasons I joined Shift was to tell other people about Lemtrada. In February 2014 I was on Tysabri (for 6-7 years) and my PML risk was found to be through the roof. My doc was out with a sick wife and I was freaking out that nothing stronger was available in the US.

I knew Lemtrada had been turned down by the FDA here but not much more. So I did a TON of research and decided to try to get Lemtrada internationally. (that story is all on the blog: lemtrada.blogspot.co.uk) I did read the Euro research that indicated Lemtrada may improve function but its liscense is only for treatment, not reversal of symptoms (meaning- there was some, but not sufficiently strong, evidence that some people’s disease was reversing on Lemtrada).

In my case I am in almost total remission of MS symptoms (diagnosed in Aug 2003, lots of symptoms prior to Lem). I thought I was doing ok on Tysabri but clearly I was failing- because of the improvement I have seen.

I could tell you more on this but- to get to your question:

Lemtrada has risks:
1) you can get an allergic reaction to the infusion, its rare
2) in 2-3 years you are more prone than the regular population to get Thyroid Disease- which is highly treatable and common in the general population- risk of thyroid problems with Lem is 30%, this is high
3) 1-3% of people get a bleeding disorder called ITP- this is treatable and reversible
4) 0.3% of people can get a very serious kidney disease called GoodPastures. This is extremely rare but extremely serious- and honestly the only one that worries me

Problems 2-4 are monitored for 5 years with monthly blood and urine testing. No big deal really- they are just checking for these 3 so they can be treated. All are treatable. If you have questions on the treatments I can explain.

Why dont people know? Why dont more docs prescribe?

Although it has been approved in the UK since fall 2013 it was not on your health system until about May 2014. FDA approved it 11/2014.

Some docs are scared of prescribing Lem due to the Side Effects 1-4 above. In some ways I get this- BUT- this should be the patient’s decision after they have been informed of the risks. I think too many docs are taking this away from the pt by not talking offering it in the first place.

Risks may be higher for these drugs vs drugs to treat say high blood pressure or thyriod disease but you cant really compare the damamge done by MS to any other condition- the side effects of MS are so terrible and so multifaceted. I post about this in length on this page of the blog:

http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html

I am unsure if that link will work for you- you may need @stumbler to translate that into UK-speak.

I talk to a lot of patients now and many have found their own way to Lemtrada and the hope it offers. There are many things to talk about (such as the closer you are to diagnosis, the better the drug works- at 10.5 years after diagnosis when I was treated I was considered to have been ‘diagnosed a long time’ but still people are seeing improvement who have had MS longer than me.

I can offer you an honest assessment of how I see the drug and obviously I believe more people should know about this drug which feels like a ‘cure’ to me.

Take care,
Emma


katfight
3 years ago

@us-emma thank you. Okay so the risks aren’t so bad really as treatable. I read this as a cure to the disease but is it a long term cure? Think I need to start reading more on it.. i seriously hate blood taking i hate needles in general but I’m managing daily copaxone i just don’t feel it’s working for me as I have a number of symptoms a year after diagnosis and 6 months since using meds!

Without the meds my nurse said things would be worse so I guess I’m thankful but maybe a change is needed.

Thank you x


us-emma
3 years ago

@Catfight

Prior to MS I was a practicing Nurse Practitioner in the states (similar to a doctor- seeing patients in clinc, writing Rx, etc, did not do surgery). In my medical opinion the repercussions of Lemtrada are highly treatable and no worse than other MS treatments. That is what that blog post I cited at the end is about.

You are so ‘young’ in your MS 🙂 ! that is very good to hear. The less damage that has accumulated the better off you will be if you chose Lemtrada.

I dont like the blood work every month but I like driving, seeing, having energy, not having pain, numbness or muscle ticks- so a little vampire behavior every 30 days is a good exchange in my book- but then you may not have so many MS symptoms- everyone looks at this differently.

If you want the medical research published by the EU I can convert it to a slideshare presentation and post a link here but that is more for doctors and so is heavy in med-speak.

I think Lemtrada has the potential to be a Long Term Cure- especially when used in the ‘young MS’ (as defined by yrs diagnosed, not chronological age) and ‘haultive’ in people further along in the disease. Then there are people like me- lucky to see reversal and improvement.

Lemtrada has been studied for about 15 years (previously it was known as a cancer drug named Campath). You can read about the study results on those long term patients here:

http://lemtrada.blogspot.com/2014/09/recent-longterm-uk-research.html

This will give you more info so you can make your own assessment as to its ‘curative’ claims.

Hope that helps answer some questions 🙂


katfight
3 years ago

@us-emma you have answered my questions in a way that I understood easily thank you, I appreciate the offer of that document but I would get lost and not understand anything so there’s no point lol.. i have a lot to learn about ms and the terms used.

I am going to read through your blog properly and the other links and hopefully learn more to make the right decision for me.

Thank you for your help and advice, I hope you continue on this path of good health 🙂


crackers
3 years ago

Hi, I would go for Tysabri or Campath. Your symptoms are mild now so using one of the stronger drugs could stop them getting worse and maybe even getting rid of them altogether.
Good luck with your decision .


emzi
3 years ago

My boyfriend was diagnosed with MS last Friday. He will be starting lemtrada beginning of April, for the exact reasons as everyone has posted above. Just hope it will stop it progressing for as long as possible .. X


graham100
3 years ago

I must say I’m amazed. Last Friday and straight on lemtrada? Good for him, hope all goes well.


emzi
3 years ago

Yes, straight into it. Thank you 🙂 will keep everyone updated …


us-emma
3 years ago

@emzi,

I work from home and did not go back full time for about 6 weeks, but I had a very flexible schedule.

I felt well the first week of treatment and two weeks after then the Lem Fatigue set in. It comes on strong in the AM then gets better as the day goes on. At first it was all day then it improves over time.

My main recommendation is to go in well hydrated (3 liters of water a day) and maintain that through treatment. He will have a lot fewer side effects and an easier week- except all the bathroom trips 🙂

Then to the really give into the fatigue and rest. Not to feel lazy or guilty about this, but to rest so you get through it faster.

If you haven’t read my blog about my experience it can be found here: Lemtrada.blogspot.com (starts March 2014) but I am happy to answer any other questions here of by private message.

Best Wishes! I am so happy to hear he is getting such an effective medication straight away! This is his best chance for as close to a cure as is available!

Oh- there is also a Facebook group called Lemtrada For MS Treatment if you want another source of experienced patients as well as those just going through their first treatment.

Take care,
Emma


emzi
3 years ago

Thanks @us-emma. I will be sure to pass on all your advice to him. At the moment I am just researching as much as possible. I am very glad to have come across this page.

In your opinion, what outcome do you think letrada could have for him? Do you think it has the potential to stop any further progression for the rest of his life? (With maybe more doses in the future, if necessary?)

Thanks 🙂


emzi
3 years ago

He is only 25 🙁


tabbycat
3 years ago

@schjo you are so lucky to be offered lemtrada! If you don’t want it can I pretend to be you and get it instead? Seriously though, it is the best, the most expensive thing out there and every one should be on it.


us-emma
3 years ago

@tabbycat,

Thanks for he humor! Made me laugh out loud. I personally want to buy up all the Lemtrada and give it away right now- be darned what the docs might think is best for us- just get on with the medicine & start feeling better.

If I ruled the world, or if a Genie gave me just one wish- I would wish for effective, truly effective MS treatment for everyone.

Today!


graham100
3 years ago

US-Gemma, I loved the quote. I had to #lemtrada and put on Twitter. Hope you don’t mind.


Anonymous
3 years ago

@us-emma is too nice to be harsh. That is my job. 🙂 The only reason I am sitting here doing this after being up all night is because you are at a point in hopefully a very long life that you can totally stop MS before you develop any of the problems that it hurt me to recount and tell you about. Ms has been for me like being a POW where the guards stop by and jab you to make sure you are in pain or at best uncomfortable.

MS confuses people because of the relapsing, remitting nature of the disease. It confuses new patients, established patients, totally a mystery to most general practitioners (GPs) Don’t listen to them. They are lucky if they ever see one. General Neuros don’t know as much about MS as a well informed patient. You want a true MS SpecialistMS Specialists can’t even agree on is there really more than one type of the disease (there must be, we already have nice acronyms for them) or is it all the same disease and as it progresses, it changes. That is current thinking among top research investigators.

New patients want to believe that doctors are expert at everything particularly if they are specialists. We want to believe that all of the disinformation on the web is right. It has to be. I googled it! It’s unsettling to think that we don’t know what’s going on.

The truth is that you have a fairly unique condition that can have almost any symptom and information accumulated more than a decade ago is unreliable now. MS is on the fast track to understanding and cure. There are enough people DXd with it and the disease modifying drugs(DMDs)are so specialized and their patients survive so long that they have made MS arguably the most profitable drug in the pharmaceutical pipeline. That means we are the most profitable patients.

You need to realize that before 15 years ago, there was virtually nothing that we could do except watch the inevitable decline and manage symptoms with generic neurological drugs and hoped that MS didn’t out pace the patient so that we could say the patient died with MS not because of MS. Left untreated, I AM SURE THAT I WOULD HAVE DIED OF MS twice! That’s because I have been on no meds twice and I got worse fast and I am talking about hardly able to function. I had to wash out of the currently treated DMD or DMT and was unavoidably delayed to begin a new DMD and once to enter a clinical trial before they realized that was an unwise thing to do. That was seven years ago with expert opinion.

FROG IN BOILING WATER
As I read the questions and concerns in this entry I am reminded of the day and week that I learned that I had MS and the terror that struck me the more I googled every website I could find. This was 9 years ago. I remember it because it WAS THE DAY AFTER THE LAST DAY THAT I FELT NORMAL EVER SINCE. I now spend hours every day that I feel able to looking for the best answer and managing this horrible disease called MS. I told my wife today that if they had not invented tablet computers, I would be totally lost. The 9 years chronicled here conjures images of the old lab joke of the best way to boil a frog. If you put him in boiling water, he jumps out. If you put him in cool water, and gradually warm it, he doesn’t jump out as he doesn’t sense the danger. Don’t be the frog! MS is d/#% dangerous. Don’t listen to anyone who tries to play it down.Don’t practice self denial. You need help and you don’t want to be put in a pot of cool water!

CHRONOLOGY
Ten years ago I was running my own Software engineering company
In sports I travelled & won 3 national championships in racquetball
I had memory, bladder, vision, sensory and muscular symptoms

Nine years ago my GP Still had never seen a case of MS. I was in
his office at least once a week.

Eight years ago, I was having every sensory related symptom in the book for MS. My GP still had never seen a case of MS. He wanted me to visit a psychiatrist. He needed to return his diploma and take neurology 101!

I had everything from incredible bladder pain to giant back spasms and woke up with the right side of my chest ultra sensitive to touch and felt like I was on fire. I have had shingles years ago. People without MS will tell you how bad shingles are. It is NOTHING compared to the pain MS caused me that attack. I LOST THE USE OF MY RIGHT ARM! I am (I’m sorry, was) right handed. I am typing this with one finger on my left hand. My GP had still never seen a case of mS and would never see me again. Year 1 wasted!

I travelled out of state to my boyhood home in N.C. to see an MS specialist at the urging of a friend with MS that lived there.
I was diagnosed RRMS on day one and selected Tysabri after reviewing the literature and discussing with the Neuro. My Neuro is part of a large neuro practice that has their own MRI and infusion center. I was scared to death that the same thing that happened to my right arm (what happened) could happen to any or all of my remaining limbs. My right arm was worthless! Did I mention I was terrified!

Seven years ago I moved to N.C. as long monthly trips to get Tysabri were getting difficult. I was gradually getting better, but was still very sick. It turns out that a disease that destroys your brain and spine can be uncomfortable. I had extreme fatigue and could not stand on my feet very long at all.
I took PT for my arm and between that and 2 rounds of 3 day IV steroids, I started to get some motor control in my arm. The IVs reminded me of someone voicing concerns about needles. I hope you are reading this and get some sense of the seriousness of MS. If you choose Lemtrada, can’t imagine why you wouldn’t, you don’t have to go to your doctor to get the monthly blood draws. There are networks of offices that perform these services. Always remember that you could be one of generations of people who can say they beat MS. Your timing is incredible! It’s almost too easy for you.

I got better….so I thought

I got worse….seriously

etc., etc, etc.

Year Seven – Pain became a constant companion. Weather changes made it worse

etc, etc, etc,

more of the same….Looking for Lemtrada trial to GET A HEAD START to possibly save me. I MISSED OUT ON GETTING IN THE TRIAL. My Quality of life is BAD! I have to hang on for another year!

PILLS, PILLS, PILLS
Daily Allotment
18 lyrica per day for nerve lpain
6 baclofen for muscle spasticity
6 alprazalam for anxiety
6 neurontin for nerve pain
5 tramadol for other pain
1 gilenya DMD
4 caffeine energy – remember this, it works!
3 supplements

A WORD ABOUT NEEDLES
I used to be the BIGGEST NEEDLE PHOBIC GUY EVER!
EVERYTHING changed for me the day I got MS. The stuff that only happens to other people happened to me! I had to grow up fast when it came to doctors medicine and needles. Needles used for IVs don’t hurt at all if you put them inside the elbow. For God’s sake don’t stick them in your hand! You get to tell them where to put them. If you are worried about future travel plans,your priorities need readjusting.

A WORD ABOUT TYSABRI
Don’t be nuts and choose a lifetime of Tysabri monthly infusions. Tysabri was the best thing going 10 years ago. I was lucky and they made it available for the second time when I needed it. It was great for its time, but Lemtrada totally obsoletes it. I did Tysabri. I know. You are constantly looking over your shoulder to make sure PML is not following. I found I got weaker by the fourth week of every 28 days. I often got my next infusion early so I could feel better. You will always wonder what your replacement drug will be because doctors are not comfortable with the PML risk. The infusion risks are very similar between Tysabri and Lemtrada. I speak often to a nurse that has MS who is in a multi-year trial and says she knows everybody and has never known a single patient to experience an adverse reaction or any long term problem. She says it is very exaggerated to reduce liability risks. I know We had a REMS program for Tysabri and it 2 months for my neuro practice to find someone willing to monitor the first dose of Gilenya.

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