Anonymous 21/01/15
Last reply 3 years ago
Could not help myself!

I decided to check the site out again for any interesting conversations and realized that a further dose of reality might help all interested in taking Lemtrada or more importantly considering not taking anything at all. It is a safe bet that I am older than most of you and was in better shape (won 3 national racquetball championships in the years leading up to my diagnosis in ’05) so let me confirm for the doubters that MS is a deadly serious disease and don’t let anyone gloss over that fact talking about fad diets and supplements. The very nature of RRMS make it an easy disease for people to become confused about so called “remedies” and even legitimate Disease Modifying Drugs. Google “MS” and “nerve pain” and you will see that at least 50% of MSers experience chronic severe pain at some point during their disease course. It’s hard to imagine that there would not be pain given the nature of MS leaving plaque covered lesions on your brain and spinal cord. You don’t necessarily just end up with a limp and need a cane or something. I am living with all of the problems that others discussing the virtues of Lemtrada have lived with and more. Chronic and severe pain is a constant companion of mine that started about 4 years ago. I have taken Tysabri and Tecfidera (during the trial) and have been on Gilenya since it was introduced in 2010. I subsequently researched available therapies and learned about Lemtrada. I tried then to enter a Lemtrada trial and missed out. I met a patient who was fortunate enough to be in the trial that experienced the same kind of remarkable results that have been shared here in this blog. Everybody that she knew experienced the same. The question has been asked here why isn’t everyone on Lemtrada. I have learned that 1) There is a lot of money involved 2) Subsequently and cynically there are a lot of politics involved. 3) Choosing MS drugs is an exercise in weighing risks and rewards. You can reduce the risk by taking a less effective drug with the hopes that it buys time to take something better that may be in the drug pipeline. The problem with that approach is the erratic and sometimes silent course that MS can take leaving sudden major disabilities, not necessarily incremental and predictable damage.

The FDA has finally approved Lemtrada here in the US and I am scheduled to receive therapy in a few weeks. I did not choose to go offshore for treatment and blow through $100K with the FDA approval imminent here. I signed up tonight for this blog as a civic duty to dispel thoughts that Lemtrada is not safe and that no treatment at all is a plan. I am horrified at the thought that an essentially able bodied patient would choose no DMD to combat an illness that most certainly will overtake your body’s recuperative powers at some point. What sudden disability are you prepared to live with? I read all of this talk about “fear of needles” and other nonsense that revealed the necessity for a “Bull in a china shop” like myself to shed more light on a frightening subject. The truth is the safest drugs are the oldest and least effective injectibles. The oral drugs are great innovations and come with varying degrees of effectiveness and side effects. Tecfidera has been linked to pml just as Tysabri which is the monthly IV. I found Tysabri to be very effective at halting my MS and even reversing symptoms. The thinking here is that if you use a strong immune suppressing drug like Tysabri, then the body has a better chance of recovering. I unfortunately could not tolerate Tysabri very well, and I (like you are now) was not certain where MS would lead me without something strong enough to stop the creeping and sometimes unnoticeable damage that continues with MS. I had always been healthy and did not like the sound of needles either. I had no clue the seriousness of MS, much less the consequences of no action. I lived in a world of only taking vitamins if anything and being extremely fit was a priority. My world now is no career (was a software engineer and entrepreneur), 10 different medications a day, 5 of which I take every 3 to 5 hours depending on ridiculous factors like the weather, Sometimes I am bedridden with severe fatigue. Other times I cannot sleep at all. I always only sleep 3 to 5 hours before awakening in pain needing more medication. Sometimes the pain is crushing like a truck has run over me. Other times, I wake up feeling like my legs are on fire. I take 3 meds for just nerve pain and have tried many others and different combinations looking for better results. This is my life now and I know it can get worse. I experience worse intermittently. Lemtrada by all accounts is the best treatment currently available that was described by one of the trial investigators as being the closest thing to a cure that we will see for years, and that the trial comparator drug (Rebif) looked like a placebo next to it Lemtrada comes with no greater risks than many of the other DMDs that are available and I have taken and gladly take given what I have learned about MS. I will gladly take 8 days of Lemtrada for a chance at not ever needing another MS DMD and potentially halting and even reversing my disease. If me being “harsh” in this blog convinces even one of you to seek out adequate treatment so that you don’t have to learn what I learned about MS, then tonight has been a raging success!

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graham100
3 years ago

With you my man. I see my nuro April and will be asking if I can be consider for lem, if not why? And find out what she thinks about it.


tabbycat
3 years ago

Fascinating. I agree that turning down medication seems a hell of a gamble with such a powerful adversary as MS. Good luck and keep us all in the loop.


cameron
3 years ago

I think a lot of it is down to denial. As a teacher, I often came across pupils who spent all their time protesting that they couldn’t do the subject/homework/exam – whatever. I used to tell them that if they invested the same amount of energy in getting to grips with their work as they did bleating about the unfairness of the system, they’d end up with top marks! I get the feeling it’s the same with MS. Instead of going round the houses debating the theories/snake-oil remedies, we should just follow the prescribed regime – drugs, lifestyle, stress avoidance etc. I have to say, however, that I was as guilty as the next person when I was dxd and wasted loads of time on various ‘blind alleys’! Unfortunately, it’s part of the process of acceptance and I suspect there are no short cuts. I came out the other end and now just try to stick to what I’ve been told to do!!


us-emma
3 years ago

@mbrsinc,

Thanks for your comments. I feel the same way about aggressive treatment to combat an aggressive disease. I have been surprise that my view on this topic can sometimes be in the minority. MS doesnt care if you treat it ‘gently’ or hate its guts- it just keeps marching on.

I am curious if you are using private insurance in the US to cover your costs. I have been contacted by some people here over concerns with insurance approvals but overall am hearing about more and more people’s pending infusion dates! So I assume they are getting Lem covered on ins plans.

I wish you the Very Best! If you have any problems with Lem or a question in the months that follow I am happy to help.

Take care,
Em

ps do you use this handle on another MS group? Shift is the only patient group I read but I used to read MSWorld until they kicked me out for taking about my Lemtrada experience by referencing my blog on the subject.


Anonymous
3 years ago

I do not participate in any blog as a rule. Pardon the pun, but I really “could not help myself” when I read some of the ideas surrounding treating MS with Lemtrada or worse not at all. The membership in this blog seems to be really supportive and mostly outside the US, so I cannot speak as to the level of care and information given to them from their healthcare providers. My experience has been to be a self advocate and I have scrambled to learn as much as possible as fast as I could. I have requested the most aggressive treatments as soon as possible. I participated in clinical trials to get a head start because I learned early on that I had what is a particularly aggressive case and I had an early relapse that really scared me. I cannot get Lem soon enough! I searched and found just last week that my insurance (BCBS) includes Lem in their coverage now. I read long ago that payers would be more prone to pay for disability preventing drugs like Lem vs. convenience drugs like oral medications with less favorable efficacy. Also, the cost is much more favorable for potentially just 8 sessions of LEM than other DMDs required for life.


us-emma
3 years ago

That is great to hear about BCBS covering it- that will help a lot of people!

Shift is based in the UK, hence the prevelence of MS Nurse talk and socialized medicine. I can say I have a new respect for how things are done in europe after traveling there for my Lemtrada.

I like both ways of funding medical care- both have good and less than helpful practices 🙂

I think your comments about Lem being a true treatment/cure for MS and hence insurers running to cover it is right- it is now First Line in the UK, but 3rd (you have to have failed others, but who hasnt) in the US. I think this is one area where UK medicine wins!

Our histories are so similar. I also had Tysabri, high PML risk, went to Gilenya and failed miserably. At that time 12/2012 O went back to Ty but by 1/2014 my titer was so high my neuro was refusing to reauthorize Ty- so it was off to Germany for Lem April 2014.

Its like we are MS sister! haha

Take care,
Em

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