Last reply 3 years ago
Switching to Aubagio from Copaxone ??

Hi

I recently saw my doctor who is pushing me to switch from Copaxone to Aubagio. I have a mild form of ms and have had few relapses on Copaxone but my last MRI showed continued disease. I have never heard of this drug last time they mentioned Gilenya but now I feel i am being pushed heavily to switch to Aubagio. There doesn’t seem to be much about this drug from person point of view. I have a demanding job and cop axone works for me due to lack of side effects.
Please can you advise if you think i would be silly not to change ?

Thanks
Hayley

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Anonymous
3 years ago

Aubagio would maybe work better, but gilenya is more efficacious. I have a fried who just had a very difficult time getting on Aubagio. Things like this vary from patient to patient. I would certainly do something to address continued damage. I am obviously a fan of lemtrada which is the only DMD that has shown to halt progression of MS and even reverse it in some people with only 8 treatments for life for most patients that take it. I am switching from Gilenya to Lemtrada next month. I am very hopeful. See @us-emma for further evidence. I know others that had similar results. She does as well.


hazie
3 years ago

Thanks for advice. I don’t think my MS is what they class as severe enough for lemtrada. I have only just been offered a new drug in 6 years of taking copoxone.


cameron
3 years ago

I’m switching from Copaxone to Gilenya with similar doubts to yours. The nurse said that I could always switch back if I wanted but that to date none of her patients have done so. Why don’t you ask what your options would be if the drug doesn’t suit?


Anonymous
3 years ago

I am struck by the number of people with MS that do not necessarily understand the nature of MS. MS is not going to warn you when something bad is going to happen. It does not strike incrementally with a predictable road map where you should pick treatments with potentially more effective than the previous one. Read the list of possible MS symptoms at one of the leading MS association websites and decide which ones would be ok to have. I have most of them and I am here to tell you they are terrible. In hindsight, if there had been a drug that could have halted the progression of MS when I was struck by it 9 years ago, you could not stop me from getting it. For example, one day I woke up and was losing the use of my right arm. I am right handed. I was lucky and after a lot of PT and steroids, I recovered most of my motor function, although lost sensory ability that limited many of the things I could do including typing which I never thought about before when documenting my code and writing associated documentation for the software that I wrote in my job as a software engineer. To make a point, try not using your dominant hand tonight and see how it goes. I know others that weren’t as lucky as I was and lost the use of their legs that quick. I developed symptoms in the ensuing months that I never had considered before like incredible anxiety and depression, bladder and bowel problems that led to my inability to continue operating my own software concern which came with tons of time demands and responsibility and of course money. Oh, and memory problems suck for engineers as well! If you have not thought about it before and I didn’t, you should definitely sign up for maximum long term disability benefits while you can. To reiterate, I would definitely pick the DMD that has proven that it halts MS progression. If used early enough, young MS patients (time that they have been diagnosed, not age) may essentially have a cure and will never have to deal with the rather lengthy list of MS symptoms that I have and comes with the added benefit of only requiring 8 treatment days for most patients.


hazie
3 years ago

@mbrsinc. Thanks for the email . I am fully aware of what MS can do having had the disease for 6 years. I also know that my future is uncertain but am trying to keep as positive as i can and to fulfil all my dreams before the dreaded disease gets me. The question was for advice as i am on copxone and this so far has worked with keeping relapses at bay with v little side effects. I have a demanding job of which i love and what to be able to do this as long as I am able. moving to the new drug which from my research doesn’t seem to have any more benefits than my current one except terrible side effects doesn’t seem like a sensible option !

I am sorry that you are having a bad time currently with your MS and wish you better


Anonymous
3 years ago

Thanks for your sentiments! Not just having a bad time currently. I have been bad off for most of the time since the outbreak 9 years ago. Before that I had few symptoms that were misdiagnosed. I had MS and was able to engineer and run a technology company as well as win 3 national championships in racquetball. Since the outbreak, I have had every symptom listed for MS and been bedridden several times. I have been focused like a laser on finding real help for such an aggressive disease. I have learned that MS silently wreaks damage on you which can be potentially permanent. Unfortunately, newcomers don’t realize the risk and intervene before damage grows. A Lemtrada trial investigator wrote ” Lemtrada is a real game changing drug. Alemtuzumab/”Lemtrada”, formerly known as CAMPATH. Also being marketed by Genzyme/Sanofi and copromoted with Bayer Healthcare. This is the most powerful drug ever seen in MS. It also has some significant medical risks, but the vast majority of people treated do not have a major complication. This a bioengineered targeted “magic bullet” monoclonal antibody for which TWO Nobel prizes have already been awarded. It has been researched in MS for over 20 years and the therapy was invented by the brilliant professor Alastair Compston at Cambridge University. I think he deserves a Nobel as well. It will save the lives of many, many people with worse than average MS.

Alemtuzumab basically makes the immune system reboot by wiping clean a great fraction of the immune cells “lymphocytes” which are the dysfunctional, misbehaving cells causing MS. It induces wonderful remissions after two once-yearly treatments (IV 5 days the first and 3 days the second). It stomped a very good MS medication (high dose interferon-beta or Rebif). Most people do not need further MS treatment for years. Mild-moderate infections, mostly minor nuisance infections (yeast, ringworm, shingles) can occur in the months following treatment, but the immune system is amazingly intact.

The down side–people feel run down a few weeks after the annual cycle. A large amount of surveillance blood testing is needed because a large fraction (25%) will develop some kind of thyroid problem, usually overactive (hyperthyroid). A few percent have this severely and feel bad for an extended period of time and need radiation therapy (radioiodine) to treat a severely overactive thyroid. A few percent also can get a temporary bleeding disorder called acute ITP, which if detected early on a blood test is simple to treat with prednisone. Both of these illnesses, and a few milder and rarer ones occur, because the immune systems of people with MS are capable of generating immune cells which react against many of the bodies organs. About 1/3 of MS patients develop thyroid disease in their lifetime anyway.

So trading severe MS for an annoying minor thyroid problem is a good deal. Moreover, alemtuzumab is the first medication which reliably IMPROVES disability in MS patients.”

There are testimonials from patients at this blog and others that I have communicated at length that had remarkable results. I am merely alerting patients to this new treatment that can be quite attractive to the disability adverse. (See @us-emma) It does indeed comes with risks of serious side effects. I have taken greater risks when I participated in a clinical trial and with other treatments of tecfidera and tysabri (both have been associated with a fatal brain infection known as PML) and Gilenya which comes with potentially fatal cardiovascular risks like bradycardia (heart can stop particularly on first dose). All of these drugs are much more effective than the early injectables and after a full experience of MS (not measured in years), I came to the realization like thousands of other fully experienced MSers that MS is dangerous too. We readily sign up for these drugs and clinical trials for God knows what as we know the very real threat of MS when left uncontrolled which can be very dangerous and even fatal in some cases. I wish you continued good luck and that you will never have to weigh the risks of these treatments.

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