What med should I choose? Please help

[JennyT]

Just DX with MS and Dr sugguested to try 1 of these 4 meds. (or if i find something else doing research) Im supposed to tell him tomorrow...
tecfidera, gilenya, copaxone, or avonex.

I should tell you I am a freak about taking ANY meds (like even tylenol) so I am a bit scared. Like seriously terrified.

I have an irregular heart beat and panic disorder so Im thinking gilenya is out. Im leading towards trying tecfidera.

any comments ... please ...

My only issue right now I think is optic neuritis.
Also what is JCV and PML? Im not down with all of the slang yet!!!

Thank you so Much

[ru4cats]

First, don't rush choosing a med. My neurologist insisted I take 4 weeks for research on all the meds. 2nd, I highly recommend you watch the YouTube video "The Future of Multiple Sclerosis treatment" by Dr. Vollmer from the Rocky Mountain MS Center in Colorado. He goes through all the meds and gives his recommendations depending on factors related to individuals. He will explain the JC virus and PML. 3rd, I personally wouldn't choose any of the injectables. They are old school, and there are better products on the market. You want the best DMD that works for you.
I chose Tysabri and am happy with my decision. I am JC- (4 tests), and it has been good to me. My risk of PML is 1/11,000. I can live with those odds!
I was scared, too, but believe me it passes quickly. Learn to be your self-advocate because I've learned no one else will be! My advice, get on the best DMD for you, modify your diet for MS, find good supplements, and develop an exercise program that works for you. Those four items will give you the best chance for ideally halting, more probably slowing MS. It is a difficult diagnosis, but this is a rapidly changing field with lots of good advancements. This forum is a good place to start! Good luck!

[Camsue]

Abbreviations on MSWorld

Abbreviations & acronyms
Family and friends
bil = brother in law
bf = boyfriend or best friend
dd = dear daughter
dh = dear husband
ds = dear son
dw = dear wife
fil = father in law
gf = girlfriend
mil = mother in law
sil = sister in law
so = significant other

Emotions and word abbreviations
BTW = by the way
IIRC = if I remember correctly
IMO = in my opinion
IMHO = In my humble opinion
lol = laughing out loud
rofl = rolling on the floor laughing
roflmao = rolling on the floor laughing my *** off
tia = thanks in advance
fwiw = for what its worth


Medical
AFO = Ankle/Foot Orthotic
CRABs = Copaxone, Rebif, Avonex, Betaseron
DMD = Disease Modifying Drug
DO = Doctor of Osteopathic medicine
dx = diagnosis or diagnosed
EEG = Electroencephalography (brain)
EKG = Electrocardiogram (heart)
EMG = Electromyography (muscles)
IPIR = immediate post-injection reaction (refers to the possible reaction that some get from a Copaxone injection)
IVIG = intravenous immunoglobulin (blood product administered intravenously)
ldn = low dose naltrexone
LP = Lumbar Puncture
MRI = Magnetic resonance imaging
MSAA = Multiple Sclerosis Association of America
MSW = MS World
NCV = Nerve Conduction Velocity
NMO - Neuromyelitis optica
NMSS = National Multiple Sclerosis Society www.nmss.org
ON = Optic Neuritis
OT = occupational therapy
PCP= Personal Care Physician
PPMS = primary progressive multiple sclerosis
PRMS = Progressive - relapsing MS
PT = physical therapy
PWC = power wheelchair
RRMS = relapsing remitting multiple sclerosis
rx = prescription/medication
SPMS = secondary progressive multiple sclerosis
sx = symptom/s
TM = Transverse Myelitis
TN = Trigeminal Neuralgia
tx = treatment/s
UA = urine analysis
UTI = Urinary Tract Infection
VEP= Visual Evoked Potential
WC = wheelchair

Miscellaneous
PM = private message
SHG = Self-help group

[JerryD]

ru4cats makes very strong points, very well stated. Good luck in your choices.

[TLC_31]

Avonex and Copaxone have stood the test of time with strong safety profiles. I have used my “old school” Avonex for most of the last nine years (with no relapse for the last six years), and Copaxone also is widely used. Remember that your selection is not a long-term contract. If you struggle to comply with the dosing schedule, if the drug clearly doesn’t work, or if the drug has unmanageable side effects, you can change.

I also have a mild bradycardia or tachycardia, something like that. Perhaps that’s why Gilenya was not agreeable for me when I tried it for 19 days. It looked like my soul had left my body, according to others, and although my heart rate is low normally, a reading of 24 while I was asleep was alarming. I know Gilenya works for many people and I wouldn’t steer new patients away from it … except in cases of patients like yourself.

All of the medications have side effects, but their impact varies greatly and unpredictably from one person to another. The side effects of Copaxone and Avonex (and other interferons) usually can be mitigated with OTC medications or other tricks. I haven’t read enough stories about Tecfidera experiences to comment on that.

An objective synopsis of the disease-modifying drugs is at the NMSS website: http://www.nationalmssociety.org/abo...nts/index.aspx

Read that and other information here and elsewhere, and ask questions anytime!

[bree2013]

Yes, thank you ru4cats. The YouTube video sound informative.

Camsue: the abbrevs and acronyms are appreciated. Ooohh, so that's what fwiw stands for!

Jenny, good luck in selecting and starting a DMD.

[ru4cats]

Thanks Camsue. That list is great! Printed and tucked away.

[Bob698]

Keep an open mind with ALL the treatments. Remember that you want to treat MS first and deal with the convienence issues later.

For many of us the "old school" Interferons are still very effective and many of us are in no hurry to change it. Trust me, the needle part becomes pretty boring pretty quick.

Try to pin down your Neuro a little more and find out what they think would be more effective and why. You could try asking "If our places were reversed, which med would YOU want to try?".

After that, do your homework. Just don't concentrate too much on the worst case. Try get as much reliable info as you can. Keep in mind that somewhere, someone can have a bad reaction to anything. That doesn't mean its carved in stone that it will happen to you. Many (most?) of these meds require you to build up a tolerance to them. That sounds scary but keep in mind why you're taking them.

[mt1111]

[QUOTE=Camsue;1411153]Abbreviations & acronyms

Not to sound like a broken record, but I'd like to add one more acronym to the list:
MMJ = Medical Marijuana
It may not be a cure (what is?) but as a symptom reliever, it's unbeatable. I know, easy for me to say, I live in Maine. If you don't want to smoke it (or vaporize it) tinctures are a great option!

[christinehrgett]

I agree, don't rush in choosing a med, everything should be done in a correct way, not all meds are good for us that's why it would be better to consult first an expert so they can guide us.