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Gilenya tidbits
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Gilenya tidbits

For those of you contemplating the new oral med Gilenya (FTY720), here are a few interesting articles.

The NMSS's Momentum mag has a nice overview of the development of FTY720, how it's thought to work, and some of the potential drawbacks.

"Fingolimod (Gilenya): How far will it go to treat MS?" at http://www.nationalmssociety.org/multimedia-library/momentum-magazine/momentum-winter-2010/download.aspx?id=28192

One of the things that is promising about Gilenya is that it acts not just on the immune system, but directly on the brain, perhaps in a way that protects the brain. Some researchers took mice without the CNS receptors that FTY720 acts on but with the FTY720 receptor in the immune system intact and treated them with Gilenya. This didn't work on the mice's MS-like illness. So even if Gilenya is working properly on the mice's immune system if it doesn't work on the brain, nothing seems to happen. The scientists think this means that Gilenya's important action is on the brain and not on the immune system.

"All told, these results strongly suggested that Gilenya's main disease-fighting properties must be centered within the CNS."

Of course, mice aren't people, but it's still intriguing. http://www.medicalnewstoday.com/articles/212103.php

It is because of this potential neuroprotective effect that the drug company is running a trial for PPMS and Gilenya: http://clinicaltrials.gov/ct2/show/NCT00731692

The Wall Street Journal has an article about how scientists went from a fungus used in Chinese traditional medicine to FTY720 at http://online.wsj.com/article/SB10001424052748704256304575320714138159240.html

sho
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572651_tn?1333939396
This was just published on 12/22  about Gilenya also.......

Scripps Research Study Reveals Unexpected Mechanism Of New Multiple Sclerosis Treatment

http://www.medilexicon.com/medicalnews.php?newsid=212103

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667078_tn?1316004535
My Doctor is doing a PPMS trial at Duke with Gilenya. I am not eligible because I am so stable. They want people when they give them the drug they can see results. I am not to keen on the warnings. Again it is the benefit vs risk. With my delicate immune system I am not eager to risk other illnesses. My MS Specialist explained these new orals will work better in stopping the progression than the injectables but they have way more risk. The better the drug in stopping progression the greater the risk.

Alex
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572651_tn?1333939396
Alex, that is an interesting thought that I think I want to ponder some more -    " The better the drug in stopping progression the greater the risk. "

Is your doctor just saying that treatment always has risk associated with it?    It seems like the FDA wouldn't approve some of these successful drugs if the risk factor goes up.

just wondering, L

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1394601_tn?1328035908
It is interesting that one of the nurses at the infusion center gave me a booklet on Gilenya.  I am all for any treatment for a drug that is stopping progression!!!  If it gives me a better chance than Rebif, I would take it....like now.  I am anxious to speak to my doctor about it next visit.
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667078_tn?1316004535
Lulu,
  Dr Skeen at Duke says he has no problem giving the interferons or Copaxone to any of his patients because they are safe but only 30% effective. He says Gilenya is about 85% effective but he will not offer it to all his patients because of the risks. Other MS researchers I have heard speak say the same thing the new orals are not replacements for the injectables because they are more effective but carry much greater risk to the immune system. The same as Tysabri and the chemotherapies they all work better than the injectables but have a greater risk. There is always the benefit risk ratio.

It makes sense that something that is better a stopping progression is harder on the immune system. Again many will want to take the risk for the benefit. I have a delicate immune system and do not wish to be one of the first only to find I am making myself sicker in other ways. Having MS is enough of a nightmare for me. Then again I now have documented MS for most of my life and slow progression and my MRIs do not change. If I were like some of our members with fast progression I would think differently. This disease is not one size fits all.

Alex

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333672_tn?1273796389
" The better the drug in stopping progression the greater the risk. "

I would read this as only applying to the new meds just coming out now and not an inevitable truth. The new DMDs are immunosuppressants and as such have stronger effects on the immune system and worse side effect profiles than the CRAB drugs, which are immunomodulators

The newer drugs do seem to be more effective, although so far we only have short-term data and it's still not clear if they're measuring the right things in clinical trials.

There are other approaches that might be less dangerous. They are looking for more focused immunosuppressants that just target the parts of the immune system that are out of whack in MS. These would hopefully be safer than the general immunosuppressants coming to market now.

And drugs that focus on neuroprotection and neural repair would work with completely different mechanisms and might have much better safety profiles (or not).

sho
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572651_tn?1333939396
I'm with you in that thinking, Alex.  If my symptoms were different I would not have a problem considering Tysabri or Gilenya.  Weighing risk vs benefit is much easier the older we get with less to lose.

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I hope Gilenya is a terrific treatment for those who can take it. I think it holds promise for future treatments.

Alex
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i took the first dose of  Gilenya today.  My docs ecided that I was not getting a good enough result with the inerferron.  I have a high lesion load but a low symptom load.  Relapses were 3 in one year after tytrating up on Betaseron.  I have not had a MRI in two years because of the pregnancy.  I am going to the dr again in March.  I am going to ask for an MRI then.
I am 36, and my drs think that I should take an aggressive approach because of the high number of leasions.  Although number of lesions does not necessarilly correspond to disability, it predicts future disibility.  So, both my local Neuro and my MS specalist want to be as aggressive with treatmentas can be.  
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