Loved Ones who support someone with MS Community Group
This group is meant for those who help someone with MS. This would include family, good friends, spouses and caregivers. It is a place to exchange good ideas that may help us in caring for those we love that have this disease.
If you want to read up on some of the main treatment options because you (or your loved one) are relapsing more often here is a bit of info for you.
CRAB Drugs listed by increasing effectiveness:
(As you can see Betaseron ->Rebif are pretty much about the same effective rates)
* Copaxone reduced relapses rates by approx 28%
* Betaseron by 31%
* Avonex by 32%
* Rebif (every other day shot) by 34%
The below drugs have been found to decrease relapse rates much more so than the CRAB drugs above.
Gilenya (+ oral med) by 54%
Tysabri (- PML risk, + once a month infusion) 59%
Novatirone 60%
Trial drug only: Alemtuzumab (5 day chemo drug infusion every few years) by 90%
Please share any data you have on the above drugs or others.
EP
CRAB Drugs listed by increasing effectiveness:
(As you can see Betaseron ->Rebif are pretty much about the same effective rates)
* Copaxone reduced relapses rates by approx 28%
* Betaseron by 31%
* Avonex by 32%
* Rebif (every other day shot) by 34%
The below drugs have been found to decrease relapse rates much more so than the CRAB drugs above.
Gilenya (+ oral med) by 54%
Tysabri (- PML risk, + once a month infusion) 59%
Novatirone 60%
Trial drug only: Alemtuzumab (5 day chemo drug infusion every few years) by 90%
Please share any data you have on the above drugs or others.
EP
FDA Issues Multiple Sclerosis Drug AlertHealthDay – Mon, May 14, 2012
MONDAY, May 14 (HealthDay News) -- The multiple sclerosis drug Gilenya (fingolimod) should not be given to patients with certain pre-existing or recent heart conditions or stroke, or those taking certain medications to correct heart rhythm problems, says a U.S. Food and Drug Administration safety announcement issued Monday.
The warning follows the FDA's evaluation of a report of a patient who died within 24 hours after receiving the first dose of Gilenya. The agency also reviewed additional clinical trial and post-approval data for the drug, including reports of patients who died of cardiovascular or unknown causes.
While it couldn't definitively conclude that Gilenya was related to any of the deaths, the FDA said it has concerns about the cardiovascular effects of the drug after the first dose. The data analysis showed that even though the maximum heart rate-lowering effect of the drug usually occurs within six hours of taking the first dose, this effect can occur as late as 20 hours after the first dose.
Along with the other recommendations, the FDA said that all patients starting Gilenya should be monitored for signs of a slow heart rate for at least six hours after the first dose and have hourly pulse and blood pressure measurements.
Patients should undergo electrocardiogram testing before receiving the drug and at the end of the observation period. In addition, extended cardiovascular monitoring should continue overnight in patients who are at higher risk for, or who may not tolerate, a slow heart rate (bradycardia).
These high-risk patients include those:
Who develop severe bradycardia after receiving the first dose of Gilenya.
With certain pre-existing conditions in whom bradycardia may be poorly tolerated.
Receiving therapy with other drugs that slow the heart rate or electrical impulses that regulate the heartbeat.
Who have a heart rhythm abnormality called QT interval prolongation prior to starting Gilenya or at any time during the cardiovascular monitoring period after they take the first dose.
Who are taking other drugs that prolong the QT interval and that can cause a serious and life-threatening abnormal heart rhythm called Torsades de pointes.
Patients taking Gilenya should seek immediate medical care if they develop dizziness, tiredness, irregular heartbeat or palpitations -- signs of a slowing heart rate, the FDA said. Patients should not stop taking Gilenya without talking to their doctor. Gilenya is prescribed to prevent MS flare-ups and slow progression of the nervous system disorder.
More information The National Multiple Sclerosis Society has more about MS treatments.
Name of new drug: Plegridy
class: peginterferon beta-1a
2 year phase 3 study on 1,516 patients.
Results: "Pledigry reduced the annual relapse of patients with multiple sclerosis by 36 percent and reduced the proportion of patients who relapsed by 39 percent."
HERE is the kicker you would get these results, which are better than Rebif/Beta Interferon or Avonex, but you would only have to inject it every 2 weeks.
So what are your thoughts on this?
I would like to see more data but this looks interesting.
In the last few years a number of new MAIN MS treatments have been made available. I am posting this list so you can review your options and discuss them with your medical professional. If you need to switch medications in the future.
CRAB Drugs that have been on the market the longest with the least amount of side effects, listed by increasing effectiveness. The one exception is BG-12 which just came on the market and can have more
serious side effects than CRAB drugs. I am listing it above Copaxone because it has the lowest impact on reducing long term disability.
* Tecfidera aka BG-12 ~ prevents T cells from entering BBB & kills T cells
+ You have to take a PILL 3 times a day(no shots) for RRMS
- less effective at reducing disability than Copaxone
- Not for people with Ulcerative Colitis (UC) or IBS problems
* Copaxone reduced relapses rates by approx 28% - Decoy Drug so immune system attacks drug and less of the myelin.
* Betaseron by 31% - Beta interferon
* Avonex by 32% - Beta interferon
* Rebif (3x week shot) by 34% - Beta interferon
-------------------------------------------
The below drugs have been found to decrease relapse rates much more so than the CRAB drugs above. HOWEVER, they can have much more serious side effects too.
Gilenya (Fingolimod) reduced relapses by 54%
-Not for preexisting heart problem patients
+ oral med
http://www.rxlist.com/gilenya-drug.htm
Aubagio (Teriflunomide)~ anti-inflammatory decreases mitochodrial enzyme unknown mechanism on how it helps MS.
Reduced relapses in study of 1088 patients by 56%
Disability progression was 20.2% compared to 27.3% in placebo group
- Liver toxic
+ oral med
http://www.rxlist.com/aubagio-drug/indications-dosage.htm
http://www.rxlist.com/aubagio-drug/clinical-pharmacology.htm#CS
Tysabri (Natalizumab)~ Stops pavementing of T cells therefore stops them from entering Blood Brain Barrier(BBB) reduced relapses by 59%
- PML risk, + once a month infusion
Novantrone (Mitoxantrone) reduced by 60%
- Toxic to heart can cause congestive heart failure
- can increase risk of AML leukemia
- check for allergies before using alone
http://www.rxlist.com/novantrone-dr...
Trial drug only: Campath(Alemtuzumab)by 90%
~ 5 day chemo drug infusion every few years
http://www.rxlist.com/campath-drug.htm
Cytoxan (cyclophosphamide)
~ several day intravenous Chemo drug
http://www.rxlist.com/cytoxan-drug/indications-dosage.htm
-------On the horizon ---
A.) http://www.medicalnewstoday.com/articles/257962.php
Phase 3 - Plegridy is a peg-interferon beta-1a
2 year phase 3 study on 1,516 patients. Results: "Pledigry reduced the annual relapse of patients with MS by 36 percent and reduced the proportion of patients who relapsed by 39 percent."
+Get better results than Rebif/Beta Interferon or Avonex, but you would only have to inject it ONCE every 2 weeks instead of 3 times a week.
B.) "ONO-4641 tablet were found to have as many as 92 percent fewer brain lesions, compared with a
group that took a placebo" Personally, I would want to see how it affects long term disability and safety in future studies.
http://www.businessweek.com/news/2012-04-16/ono-s-experimental-ms-drug-cuts-brain-lesions-study-shows