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
"Avonex will be 1 shot a month subcue. (just under the skin). What a wonderful thing for avonex users!
Also a new drug that will be out in late 2012. It's called BG-12. It is 2 pills a day and zero side effects! Looks like the best med out there."
The crab drugs are much safer than the meds lower on the list. The ones lower on the list have fewer relapses but more side effects and can be lethal.
1.) Cytoxon (cyclophosphamide)
2.) Mitoxantrone
Kayce posted and other people replied with below information at URL:
http://www.dailystrength.org/c/Multiple-Sclerosis-MS/forum/Treatments/12914133-chemotherapy-treat-progressive-ms
"the diffrence between the Cytoxon & mitoxantrone...is scary, the side affects. The risk of causing bladder cancer bugs me, like we don't have enough bladder issues already!, but my urologist says they give a med that blocks whatever compound from adhering in the bladder that significantly reduces that risk.
I'm worried also about the damage it can cause to your heart, as heart disease runs in my maternal female side of the family, but I'm gonna try to get hooked up w/ a good cardio that knows about chemo damage so I can be monitored closely. That will ease my fears.
And since it suppresses the entire immune system, the neuro following the treatment told me if my temp rises above 100.8, to go to the ER immed for a full workup.
And my dentist told me not to floss and do peroxide rinse if my blood count goes below 20k, because the mouth is the highest germ zone!"
There are many meds out here being used for pain reduction they include: Lyrica, Opana, Darvocet, Exalgo, Neurotin, tramadol or Oxycodone (percocet).
If you have Terminal Neuralgia (TN) pain it can get pretty bad. If you can't find any meds to help, then they can block the nerve or cut it to get rid of the pain for good. However, this is a last option as it leaves you unable to feel parts of your face.
Malpractice has made many docs afraid to prescribe some of these meds so ask to be referred to a pain specialist.
LOW Dose Naltrexone (LDN) is used at 2-5mg to improve quality of life to those with Crohns(Penn State), MS (UCLA, etc) and other diseases in University research.
Since it blocks the effects of opiates it should not be used by those that are on pain meds. However barring that the only adverse side effect in research has been vivid dreams.
It took about 3 months of using LDN but my hubby has had significant reduction in urinary spasicity at night. So instead of getting up in the middle of the night 6-8 times he now gets up maybe once. Needless to say, he is getting a lot more sleep.
It is pretty cheap too so if you are interested print out the research and talk to your doctor about it.
http://www.ncbi.nlm.nih.gov/pubmed/18728058
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. Conclusions for 35 people(40 but 5 dropped out):A significant reduction of spasticity was measured at the end of the trial. BE (Protein concentration of beta-endorphins) concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.
http://www.ncbi.nlm.nih.gov/pubmed/20695007
80 subjects with clinically definite multiple sclerosis were enrolled and 60 subjects completed the trial. 10 withdrew before completing the first trial period: 8 for personal reasons, 1 for a non-MS related adverse event and 1 for perceived benefit. Database management errors occurred in 4 other subjects and quality of life surveys were incomplete in 6 subjects for unknown reasons. ... LDN was well tolerated and serious adverse events did not occur. LDN was associated with significant improvement on the following mental health quality of life measures: a 3.3 point improvement on the Mental Component Summary score of the SF-36 (P=.04), a 6 point improvement on the Mental Health Inventory (P<.01), a 1.6 point improvement on the Pain Effects Scale (P=.04) and a 2.4 point improvement on the Perceived Deficits Questionnaire (P=.05).
Interpretation: LDN significantly improved mental health quality of life indices. Further studies with LDN in MS are warranted.
http://www.ncbi.nlm.nih.gov/pubmed/21256121
MOUSE study: Neuropathological studies revealed i) astrocyte activation and neuronal damage as early as day 10 (prior to behavioral symptoms) in all MOG-injected groups, ii) a significant reduction of activated astrocytes in MOG+OGF and MOG+LDN groups compared to MOG+Vehicle mice at day 30, and iii) no demyelination on day 60 in mice treated with OGF or LDN and not displaying disease symptoms. These results indicate that treatment with OGF or LDN had no deleterious long-term repercussions and did not exacerbate EAE, but i) halted progression of disease, ii) reversed neurological deficits, and iii) prevented the onset of neurological dysfunction across a considerable span of time
+ You have to take a PILL 3 times a day(no shots) for RRMS.
- Not for people with Ulcerative Colitis (UC) or IBS problems
http://www.medscape.com/viewarticle/752287
http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/13955497-bg12-news
New Meds powerpoint ~ this is REALLY GOOD (posted by MSInterrupted on the main board)
http://mina.aan.com/media/2011_Booster_MS.pdf
RILUZOLE is well established at reducing glutamate in ALS and is one of there best drugs against this disease. See following on how ALS is like MS including high glutamate which is the target of this drug Riluzole. http://www.jneuroinflammation.com/content/9/1/20
NIH research of Riluzole on MS all seems positive.
1.) http://www.ncbi.nlm.nih.gov/pubmed/15949499
Extracellular accumulation of glutamate contributes to excitotoxic injury of neurons and glial cells, suggesting that the maintenance of subtoxic extracellular glutamate levels may be crucial. Riluzole is a neuroprotective agent that inhibits the release of glutamate from nerve terminals and modulates glutamate, i.e., kainate and NMDA receptors. It inhibits excitotoxic injury in several experimental models of neurodegenerative disease. We performed a small run-in versus treatment MR-monitored pilot study in 16 primary progressive MS patients. The results suggest that riluzole reduces the rate of cervical cord atrophy and the development of T1 hypointense lesions on magnetic resonance imaging in primary progressive MS. The rate of brain atrophy was only slightly decreased. The results indicate an effect on mechanisms involving lesion evolution and axonal loss, but no clear effect on new lesion formation. However, the data suffer from several limitations and must be confirmed in future trials.
2.) http://www.ncbi.nlm.nih.gov/pubmed/14556941
In conclusion, our study demonstrates, for the first time, that riluzole can reduce inflammation, demyelination and axonal damage in the CNS and attenuate the clinical severity of MOG-induced EAE. These results suggest that riluzole, a drug used in amyotrophic lateral sclerosis (ALS), might be beneficial for the treatment of MS.
http://clinicaltrials.gov/ct2/show/NCT00202397
Phase 2 trial done
Best wishes to all,
EP
PS Excess glutamate is thought to be damaging nerves in both these disease because of constant neuro-stimulation without calming GABA like normal brain. Plus because glutamate is in excess and not at healthy level it interferes with mitochondrial function that reduces ATP and is thought to be contributing to nerve damage too.
http://www.businessweek.com/news/2012-04-16/ono-s-experimental-ms-drug-cuts-brain-lesions-study-shows
So could you have serum glutamate checked every 2 months then when you see it elevate take this Riluzole to reduce the glutamate & try to prevent relapse? Good question to ask your doctor with the below research and above links printed out and in your hand while you discuss your options.
________________________________
http://www.sciencedirect.com/science/article/pii/0022510X8090088X
Abnormal glutamic acid metabolism in multiple sclerosis
Authors: Fred C. WestallCorresponding author contact information, Angela Hawkinsa, George W. Ellisona, Lawrence W. Myers
Abstract
"We have found extensive amino acid abnormalities in multiple sclerosis sera. The most consistent abnormality is an elevation in serum glutamate, which is most striking during relapses. The increase in glutamate in the patients does not occur sharply during the onset of the relapse. Instead it appears to rise gradually within a month or two prior to the onset of the clinical relapse, to reach a peak during the relapse and then to slowly decline."
I have read a couple research papers lately that have said "abnormal interstitial permeability is in multiple autoimmune diseases" such as UC, Crohns, MS, RA, etc.
me- So the GI is compromised this means that absorption/ metabolism could be impaired.
Larazotide, a zonulin protein inhibitor, has been found to reduce “intestinal barrier dysfunction” caused by gluten. It can reduce inflammation markers, GI symptoms and stopped antibodies against transglutiminase tissue. This drug is now being STUDIED with type 1 diabetes, MS and Crohn’s disease
So keep your eye out for LARAZOTIDE med research on MS in the future.
Research if you want to read the articles.
1,) Fasano A. Surprises from Celiac Disease. Scientific American, 2009; 301(2): 54-61
2.) Kelsall B.L. Innate and Adaptive Mechanisms to Control of Pathological Intestinal Inflammation. Journal of Pathology, 2008; 214 (4): 242-259.