anawith1n 25/03/15
Last reply 3 years ago
On Gilenya ( fampyra or lemtrada)

HI it’s me again seeing my neourologist on Friday im going to ask him to change my treatment.
I’m on Gilenya now for nearly a year. I’ve just heard about these 2 drugs this week. Fampyra yes it’s quite expensive here in Australia but I hear it gives you energy and u can walk better.
Lemtrada well I just heard it on the news today and it’s covered here in Australia now. I’m contemplating which one??
Please advise me

Thanks
I have MS 16years now, still walking but get very tired quick.

amawith1n

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caterpillar
3 years ago

@anawith1n Fampyra is not treating inflammation, it is just treating symptoms(problems with walking) and as such is not a DMT. It is used together with other medicines ( the so called DMTs= disease modifying treatments).
If you are unhappy with Gilenya, maybe Lemtrada is an option ( both are DMTs), then if you still have difficulty walking, try Fampyra.

Hello,

I’m with @caterpillar on this one. I’m SP so i’m not on a DMT but do take Fampyra. It doesn’t appear to help with my walking so much now but it definitely gives me more energy.
As Lemtrada is a DMT it will modify hopefully slow down or halt progression. Fampyra will not do that. And yes it s expensive!!


Anonymous
3 years ago

Everyone is right here. It is not “either or” when deciding on these drugs. Lemtrada is a great choice for DMT and Fampyra treats the symptoms of MS. It does not halt or slow down it’s progression. It improves the transmission of nerve signals across the damaged myelin. It can help virtually any symptom as a result. The quickest and most certain way for the pharma to gain regulatory approval was to measure an increase in walking speed in a 25 foot walk. It helped over 30% of patients using the timed walk in the trials. They did not measure things like an increase in energy and strength which it clearly has given me. Regardless what DMT you choose, you might want to give Fampyra a try. You can get the generic immediate release form made for you by a compounding pharmacy very inexpensively. I took it for 2 years prior to the release of the proprietary timed released formula known as “ampyra” here in the states. I took a small pill prescribed by my neurologist and made by a local compounding pharmacy 3 or 4 times a day. It worked quickly and almost magically for me.


keligal68
3 years ago

Fampyra works!!! I tried a little test by going off my Fampyra and within 1.5 weeks my ability to walk was lessoned. Yes it is pricy but worth every dime! I am lucky my husbands prescription coverage pays 100% of my meds. I do have a one million dollar life time limit which between the Tysabri and Fanpyra I see myself out of coverage in 10 years and then I will be looking to find other coverage.


anawith1n
3 years ago

U guys are amazing thankyou so much for ur time, much appreciate it.
Anawith1n


us-emma
3 years ago

Ana,

I know 4/1/15 is the big day for Lem down under. I hope it is offered to you as an option. It has made a HUGE, I mean bigger than anything else ever, positive difference in my life.

I have been diagnosed nearly 12 years and have had all my major symptoms reverse since I took Lem April 2014.

I have kinda been on a war path since- telling people how effective this treatment has been for me. I never thought anything would reverse MS- I truly didn’t think it was possible.

I am happy to answer any questions about the treatment you might have.

Take care,
Emma


keligal68
3 years ago

OK Emma spill it!!!!!


anawith1n
3 years ago

Well I went to my neourologist today, he was totally against it to lemtrada he just told me all the bad scenario side affects and it turned me off BUT what I’m going to do is go to another 2 nd opinion and get some more feedback.
Really I want to hear from your thoughts. He also gave me info on another treatment which I don’t remember the name but I’ll get it soon.
Just got tested for the jv and waiting.


anawith1n
3 years ago

Tecfidera is the treatment


us-emma
3 years ago

There are many reasons I would not choose Tec, the two primary ones:

There is more effective medicine out there, even more effective orals, and

The side effects of Tec- look them up- but mostly such terrible GI side effects that may never go away. They are so bad the drug is always started at 25% of normal dose and titrated up to help the patient ‘acclimatize’ to the side effects.

I have enough MS side effects. I dont need to add massive GI problems to the list.

I believe your doctor to be uninformed about Lem and am very glad to hear you plan to seek a second opinion. Post a separate message on Shift asking for other Aussie’s for the name of the doc that agreed to Lem for them- or sign up for the facebook group Lemtrada For MS Treatment (english speaking private group- you have to ask to join but it is automatic and your posts there are only accessible to the group).

I am a member there and know there are MANY Aussies who have doctors and infusion dates in Australia.

In case you didnt know I have blogged about my Lemtrada experience. This post might be of interest to you:

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

Here I discuss the real deal on what Lem side effects are and why they are not a really huge deal. They are certainly much more manageable, detectable and monitored for than PNL- that has now been associated with 3+ other MS treatments.

I think the risk for MS drugs needs to be put into the perspective of what it means to have the disease. The disease is horrible, takes so many basic personal traits from you and robs you of ‘the good years’, leads to an early death by at least 10 years. You also lose so much quality of life over the course of MS- you lose quality of life for MANY years before you lose your life.

I hope that post helps.

Emma


us-emma
3 years ago

not PNL, sorry PML


us-emma
3 years ago

@keligal68,

My experience with Lem can be found at Lemtrada.blogspot.com going back to March 2014.

Here is an overview. I was diagnosed in 2003 by Jan 2014 I had resigned from my primary job as a Nurse Practitioner (similar to a doctor but only seeing patients in clinic not hospital) treating adults with HIV. I resigned because MS started affecting my memory and I was concerned I would made a medication error in prescribing or miss something else important.

I went into HIV clinical trial research but after 1 year I could not keep up the pace due to fatigue and had to resign that job. I went into clinic administration but the travel was too much, etc This goes on, but now I work from home as a dental secretary processing insurance claims- a far cry from the medical career I had planned for myself.

I had always been very agressive in my treatment of MS with available therapy. I was on due therapy as early as 2004 and when Tysabri first came out I was on dual therapy with Avonex until the FDA pull the drug due to PML. When it was re-released 2 years later I was back on it as mono therapy.

I had always been JCV+, putting me at risk for PML. I knew this from the start but still wanted to be aggressive. When the titer became available I took that test and it was high. In Jan 2014 the titer was so high that my risk for PNL was greater than 1 in 50.

My doc refused to allow me to continue with Tysabri. I was crushed. I knew this was the strongest medicine out there against the disease. Just 2 months earlier the FDA had denied approval of Lemtrada. Now my doctor was out with his wife in ICU and I had no meds to fight MS.

A brief discussion of how I was doing in Jan 2014:
Pain: I am not a whimp when it comes to pain but my pain and muscle stiffness was so high I was on 4 muscle relaxers, both narcotic and non-narcotic pain meds and many drugs to tamp down my nervous system.

Fatigue: I could not drive, walk though a store, could not do dishes, cook, laundry, bathe alone, blow dry my own hair or leave the house except in extreme cases of necessity.

Mental Confusion: I could not remember plots to books, tv shows, how to do basic functions of my job without writing everything down. I could not remember which roads got you to your destination, etc.

Vision- I could not see at night or on very bright days. I wore sunglasses all the time.

This is not a pity party, just wanted you to know where I was.

So when Ty was no longer an option and neither was seeing my neurologist *out with sick wife) I took matters into my own hands. I did my research on lemtrada. I thought it might be as strong as Ty- and clearly I was getting worse on Ty.

Lemtrada by that time had been approved most places around the world- Most Euro countries, UK, Australia, Mexico, Canada- but many were not infusing yet or the drug was not available in country yet. Mexico and Canada were the logical course but Mexico was clueless and Canada refused to infused cash paying Americans because they feared lawsuits.

So I took my case to Euro countries. I found several doctors in Czech Republic and Germany who would infuse (France and UK were not yet infusing). One of the German doctors agreed to speak with me on the phone and due to my medical background and knowledge of the drugs effects, agreed to provide me with Lem as a cash paying patient.

I am forever grateful to the entire German people for this.

The week of Lem was easy as was the travel home (which I was worried about after just wiping out my immune system). About 2 weeks later I started to feel like absolute crap. I thought I had contracted the plague. I knew my immune system was wiped out so it couldnt mount an attack. I was tired beyond belief and didnt know what was going on.

After talking with several other patients who also went abroad we figured out it was just what happens after lem and started calling it Lem fatigue. Basically what is happening is that your body is going into overdrive to replace all the blood cells killed off by Lem. The best analogy would be how you might feel tired during pregnancy as the body is making cells for the baby but in overdrive.

The fatigue was different from MS fatigue. It came on hard in the AM and as the weeks went on it started to get better towards the afternoons and slowly went away. At 12 weeks post Lem it was completely gone.

Now the best part- I started IMPROVING- first thing I noticed was the fatigue lifting. Then I was moving so much easier and I needed far fewer muscle relaxers. i stopped needing any pain med at all. My eye sight improved and I could see at night. With fatigue and eye sight better I could now start driving again- and having energy to do whatever I drove to.

The improvements keep coming and now I feel like I dont have any MS symptoms at all.

To go from contemplating an application for disability to traveling, walking up steep hills and swimming with sea turtles- all the improvements have simply been amazing. Beyond what I ever could have believed would have happened to me.

All the details for this are on the blog- written as they happened. Now I clean the house, make my own meals, do laundry, do all my own self care.

Then started my ‘war path’ to get on every site I could (but now just shift really) to help people understand this therapy and what an amazing blessing it has been for me.

I am so happy to hear of every new person to get Lem or get approved for Lem- I hear their MS symptoms and KNOW things will get better for them with Lem and time, Lem and time…

The real headline here is that MS just doesnt get better, not prior to Lem, MS is progressive, terrible and unfair. Now we have a way to fight back and start WINNING battles against this disease.

Lem was finally approved in the US in Nov 2014 but our FDA is requiring so many hoops that few patients here have been infused but the numbers are certainly growing. So my mission has changed a bit from advocate to support system for any patient that asks.

Best wishes to you in your journey against this horrible disease. I wish for you effective treatment and a normal life!

Take care,
Emma


keligal68
3 years ago

Does anyone know if Lemtrada is approved in Canada? And if it is less expensive than Tysabri?


Anonymous
3 years ago

@us-emma, I am very glad to see you are getting more adamant about telling these young people the deal is not what drug has the worse SEs. That seems like the biggest worry here and inexplicably by most doctors. @sandwich and I talked about it yesterday. I am not doing well at all and @sandwich has never even been ill, but is astute enough to have actually researched the topic and wants to remain autonomous. Smart Guy! I feared that in my pain I am sounding too harsh in my postings, but people need to hear the message that there is a GIANT elephant in the room that is WAY worse than any SEs minus PML, that is MS! Glad you are back. Lives are being changed! Hopefully others will not have to endure the dark side of MS.


us-emma
3 years ago

@keligal68,

Yes it is approved in Canada. The have a national infusion protocol & it is on the health system there.

I have a doctor contact in Vancouver who sat on the board to write the Canadian Guidelines. If you would like his contact email send me a private message. Unsure if I should post that on an open forum.

Em


anawith1n
3 years ago

Omg @us-emma I had a good read at the blog you wrote, my fear is the process when you get ill from Lem, I have 2 boys and the rely on me. I have no time to get sick, suffer the pain. I’m on gylenya now for 1 year and I do want to swap. There’s a BUT???? I’m confused and I’m glad im getting all these wonderful feedbacks from all of you. Thank you so much.


Anonymous
3 years ago

@anawith1n, I can’t wait for those SEs. I have been on Gilenya for 4 years and I have constant nerve pain and take 5 meds every 4 hours so I can move some for a few minutes. Gilenya is the strongest oral med. Tecfidera comes in second. I took Tec for 1.5 years in the clinical trial before switching to Gilenya. If your doctor’s plan is to switch you to Tec, find somebody else.


anawith1n
3 years ago

@
mbrsinc
My neurologist does Not want me to stop
Gilenya he prefers me to stay on it.


Anonymous
3 years ago

@anawith1n, That makes better sense, but both @us-emma and I will tell you that Gilenya will not keep you from progressing. She took it as well and it did not help and I already told you what a failure it has been for me. It may slow it down. MS is a dangerous unpredictable disease that should not be trifled with. Call me crazy, but it doesn’t comfort me to know we are just slowing it down.


us-emma
3 years ago

Ana,

There was a lot of initial worry about susceptibility to infections with Lem. This has jot been born out as the experience with Lem in MS patients is approaching 20 years.

The drug has been around much longer a treatment for a rare cancer-CLL, it is given in much ER higher doses for cancer and for much longer. Infections were also low in that group.

Another concern was that Lem patients might lose the immunity they gained or a life time to bugs they were exposed to (like you might lose the ability to fight the chicken pox virus and get it again). This has also been proven not to be the case.

I flew from Dresen to DFW 1 day after finishing Lem. I went through 3 airports and many public areas with no immune system. I brought a mask but me doc said it was not necessary so I didn’t use it but did use Purrell and tryed to avoid touching things, which is difficult with so much traveling. I did not get sick.

Another woman, an MD also a US citizen, was treated at the same time as me in Germany and she did not get sick either. She has two young girls, less than 6 and did not get anything from them despite their attending preschool.

So the low rate of infection is quite proven but I would recommend talking smart precautions- avoiding public places, using hand gel & washing your hands a lot. Hospital & Grocery stores are the biggest risks in my mind so I would avoid them all together for 3 months.

The recovery from Lem is a challenge but it is only 3 months of your life and abates during that time, getting better daily. The other bonus is that Lem is out of your body in less than 30 days & so you are not having to take continual meds which have their own side effects- I developed permanent heart damage from Gilenya and now have to see a cardiologist regularly.

Then there is the most amazing effect of getting better. Which will give you the ability to be an active mom for decades to come. I am almost 41 and tried to have kids but it was difficult abut another reason we didn’t push it was my fear of not being able to actively be the kind of mom I wanted to be.

These are good questions and you are obviously thinking through your options and weighing your treatments. I think this is smart. Lem may not be the best fit for you but it has changed my life dramatically.

Best wishes in your decision.


Anonymous
3 years ago

@us-emma, I read your last post and wondered how long you had dealt with many of the symptoms you described having Jan. ’14. I am extremely hopeful that I can reverse some of the same symptoms that you described if I finally get Lem in April. I keep feeling like I am running out of time or have run out of time. Thanks in advance! 🙂


us-emma
3 years ago

Ana,

Mbrsinc question might be of interest to you.

As I said I was in Tysabri for 6-7 year with 3 breaks. The first break was when the FDA pulled it. I restarted when it was re approved.

The other two haults were due to concern about my PML risk. Is really during this second hiatus from August 2011 to Dec 2012 when I was switched out to Gilenya, that my MS REALLY exacerbated.

My fatigue and pain skyrocketed. I stopped driving and had other vision problems. When I restarted Tysabri late Dec 2012 I never regained my previous function.

So my first hand experience is that Gilenya is a much weaker drug than Tysabri. Then after my Lem experience I was shocked to learn how ineffectual Tyasbri was to Lemtrada.

I don’t mean to say Tysabri was not great when it was the only thing out there but now we have a much stronger and effective medication based on clinical trial research and my own personal medical experience.

Take care,
Emma


caterpillar
3 years ago

I think neurologists, like most people, are afraid of all things new and unknown.
I am on Gilenya and quite OK with it, other than my blood tests are not OK. I have had low lymphocyte counts pretty much from the start, now at 0,24 ( at lower than 0,2 Novartis recommends stopping Gilenya) and my neurologist is considering what to do next.
She is all for Tysabri ( even though I am JC virus positive). She was not happy when I asked about Lemtrada and she came up with a list of potential side effects. I am not afraid of thyroid problems on Lemtrada( most common, but manageable – other than some thyroid cancers in the studies). Then she went on to ITP ( probably also manageable), then kidney problems ( that I am somewhat afraid of, even though it is very rare, not fun).
But all in all, the conclusion on her part was pretty much: Tysabri or…nothing?
They have been doing Tysabri for years, so that is “the devil they know”. They have also been using Lemtrada for over a year, but Lemtrada, I guess, they are less familiar with and therefore less likely to use.


tabbycat
3 years ago

@us-emma. I was concerned to hear that you had heart damage from gylenia . I have been taking it successfully for two years, but have just had some very odd blood test results. If you don’t mind me asking, how did the heart problems manifest themselves ?


Anonymous
3 years ago

@caterpillar, IMO, there is more than enough evidence that your neurologist apparently has not bothered to review (decades), and since panels of experts with regulatory responsibilities all over the world have approved it in more than 40 countries, thank goodness you aren’t held hostage to a very bad choice by one uninformed neurologist. But then again, your main concern is not liability issues like your neurologist. It is keeping this monstrous disease from taking more from you. I would look for a more informed neurologist or one that leaves the decision up to an informed patient.


Anonymous
3 years ago

A General Observation: It is amazing that neurologists want to see more evidence of disease activity before ordering more aggressive treatments. It seems they are a bit indifferent to the fact that we are talking about activity that damages the brain and spine. Maybe it is the result of spending their careers around so many conditions that require managing the decline. No informed neurologist should give you the choice of tysabri, which can give you a death sentence with a relatively high risk of pml, OR nothing! That’s pretty arrogant at the patient’s expense. I think it says they are either uninformed or not certified to prescribe lemtrada. It’s definitely time to move on!


anawith1n
3 years ago

Lemtrada I need to get more info on, I hear good and bad about LEM so I realty need to consider or just go for it. I am so freKin scared you know. Thanks everybody, I am not the only one that has MS THE BAD SMELL!
Thanks heaps guys


Anonymous
3 years ago

@anawith1n, Us-emma laid it out for you! She is a professional with MS herself who paid for Lemtrada on her own dime. She has done the research, explained it in terms a layman can understand. There is no better reference for you. She even knew others including an MD that went offshore for treatment. These are incredible references for us! I know another medical professional who was in the trials that had a remarkable recovery. She is a dear friend that told me when I was faced with similar fears, that she never saw or heard of a single instance of a negative result. That the risks were seriously exaggerated to avoid liability. The fact is Ana, life has dealt us a hand that is not for kids. You know what your choice should be. Go for it!


us-emma
3 years ago

@tabbycat,

During the time the heart troubles were discovered I was undergoing orthodontics and at each visit- approx 3 weeks apart my BP was taken.

Between one visit in the next my BP went from low/normal to so high we considered an ER visit. I opted to see my cardiologist instead.

I have a cardiologist because when I was diagnosed with MS (2003) it was thought at that time I was having a heart attack due to many unimportant factors. It was determined not to be cardiac at all but at the time I was hospitalized for 5 days on the telemetry floor.

At age 29 I was the healthiest person on the ward and MS was found on MRI.

Anyway, it was recc that I follow up with this cardiologist when I recovered from the steroids and the start of Avonex 2 weeks later (a contrast to the wait & assess approach in other countries)

I did and had a normal work up which included a 12 min cardiac stress test (you run while monitored). I have had this test repeated every 5 year. Both of the first two stress tests showed great physical fitness- I have always been athletic.

I had another test in 2012 after Gilenya which showed heart damage & now I take 2 blood pressure medicines a day. No other reason was found and the Gilenya was stopped.

My BP is extremely hard to treat and I guess I have Gilenya to thank for that. They could find no other cause.


Anonymous
3 years ago

I know Gilenya has documented cardiac effects. I do not remember technically what was reported. For me it helped settle some palpitations that sent me to the ER. That was when I learned what anxiety was. I have never been without it ever since that week, an early casualty of MS. I suspect the Gilenya had more of an effect on the anxiety than the heart.

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