Happy With Meds?
 

Is everyone happy with their DMDs?

We've had a bunch of new meds come on the market, since we started this merry-go-round and I wondering how you all are doing on your med of choice?

I have not tried any of the new ones, because, I don't think they can beat what LDN is doing for me and I don't like the side effects of them.

Some of you have gone on the new GY, TY, Vein treatment, Cytoxin, hormones and much more. Please tell us if and how they are helping you....and/or, are they hurting you?

I think the scientists should rethink MS and go back to the drawing board. I'm sick and tired of big pharma and the FDA, pushing all these drugs on us, that MAY help us, IF they don't kill us first. There must be something out there that could stop this disease, without hurting us more?:mad:

We are used and abused by some of these, so called helpful, drugs, while big pharma and some of our Docs fill their pockets.:mad:

I'm happy with LDN. I was miserable on the DMD's. For those who can tolerate them and seem to be getting some benefit from them they're great. For the rest of us it's a case of the treatment being worse than the disease. It was for me.

I am happy being bareback. B and C were miserable for me. I was just suffering. If the big pharma could introduce me to a substance that helps and isnt so full of side effects that I feel like I am going to die, then I may try one. till then...stop helping me!

I'm happy with Copaxone for now. I'd consider a switch if something better comes along that has a track record or if I start declining more rapidly.

I am very happy with Avonex, don't see anything on the horizon that may be better, not even the distant horizon. This is because everything new they are considering has significantly greater risk of serious complications. The injections seem to be very safe.

I'm extremely happy with Copaxone. It's working great for me! I feel very fortunate!!

I don't mind the Copaxone..the problem is remembering to inject...the cog fog takes over more than ever...

Rebif (3 + years) Made me fell terrible and never helped
Novantone made me vomit.
AP-4 (fampridine?) (bird poison) made my throat blreed a little and did nothing positive for me)

I'm PP, Nothing helps but chocolate (well, at least it tastes good)

i'm fine on my copaxone. i'm stable, and walking with aids.
it's either the MS (mild?) or the C itself. who knows.

sally, could you tell me again what LDN is? i keep forgetting.
thanks.

The med is Naltrexone and LDN is Low Dose Naltrexone.

Naltrexone, at the higher doses 50 to 300mg is used as a narcotic/alcohol antagonist. In other words, it helps people get off of drugs/alcohol, by blocking endorphines

Dr Bernard Bahari, A New York Doc/Scientist, while searching for something to help Aids patients, discovered that Naltrexone, in small doses (1.75 to 5mg) not only helped some with Aids but also stopped/slowed MS progression in it's tracks.

By taking LDN sometime between 10pm and 1AM, it temporarily blocks endorphines, causing the endorphins to increase production during the wee morning hours.

Go to LDN Homepage for more info.:)

I used Betaseron for 18 mos., but went off when my red blood cell count went dangerously low.

I just stopped Copaxone in November after nearly 5 years because this past year I lost vision when experiencing three treatable relapses.

Today was my 4th day on Gilenya. I'm hoping this drug will cut my relapse rate so I don't have to do IVSM every 3 months.

Hi, Sally!:)

:Wave-Hello: Hi Jalee, my old friend. Nice to hear from you. Where ya been. Did I desert you or did you desert me?:D

Keep us up to date on how you are doing on Gilenya, OK?

So sorry for the eye problems. Are they ok now?:hug:

:hug:I would love to hear the story of your journey on this med. Please keep us updated. :hug:

Just LDN for me, thanks. Did Copaxone for 9 months, but didn't have enough confidence in it. Have taken the LDN for a couple of years now (I think).

I have an appt. with my new MS neuro in a couple of weeks. She has great faith in the DMD's; however, she suspects I have Transverse Myelitis instead of MS, so she didn't insist I take a DMD for now.

Only ever did Copaxone for approx. 10 months. The side effects weren't worth the medication for me, and I felt like in my case, it wasn't going to make a difference stopping it.

I voted diet changes over medications for keeping me in remission. Seems to be working so far! :)

Just wanted to say...

Happy without meds :p

I just wanted to post here, the recent warnings from Betaseran and Copaxone.

Don't use the Triad Alcohol Pads that come with their injection kits. They have been contaminated with a Bacteria!!!!

I am on Rebif. I can say I don't like it. It makes my body feel like crap and i'm not so sure its even working. Plus it hurts like an s.o.b. when injecting. And it has chinese hamster ovary cells in it, that's gross.
I do think im going to talk to my neuro about the LDN, the whole 'stopping/slowing the ms progression in its tracks' really was a seller to me lol

I've been around, but RL keeps me busy so I don't post a whole lot. The eye problems are always keeping me aware how precious my sight is. Anything that seems abnormal in my vision, I get checked ASAP.

How have you been?

Not much of a journey, yet. I just started on Gilenya last Thursday, so it is too soon to tell if it is going to agree with me or not.

If you have questions though, I'll be happy to answer them if I can.:)

I am curious...
 

I know some of you had troubles with some of the DMDs. What types of problems were you experiencing???

Thank you! :hug:

Rebif as well.
 

I have been on rebif since June. I can't tell if its working or not. I hate needles and have had a mishap which led to anxiety and not being able to administer myself for about a month. I'm back to injecting myself but 3 days out of the week are terrible for me. Those evenings are not my own and dictated by rebif.:mad:

Rochelle,
 

I was curious about Transverse Myelitis so googled it. I ran across this article and found it interesting. I am sure you already know all about it but will share this part with you. Hope you get some relief from you symptoms soon! :hug:

"Researchers believe that transverse myelitis often occurs when your body's immune system mistakenly attacks its own tissues, resulting in inflammation and injury to the fatty insulating material that covers nerve cell fibers (myelin) within your spinal cord. Diseases of the central nervous system frequently cause transverse myelitis. These include:

Multiple sclerosis. Multiple sclerosis occurs when your immune system mistakenly attacks the myelin sheath surrounding nerves in your spinal cord and brain, resulting in areas of scarring (scleroses). Mild attacks of transverse myelitis may be the first sign or represent a relapse of multiple sclerosis. Transverse myelitis occurring as a sign or symptom of multiple sclerosis usually manifests on one side of your body only."

http://www.bing.com/health/article/m...verse+myelitis

Thanks, good info!!!:)

Mocahgirl13 I am sorry to hear the Rebif isn't being so friendly to you either.
I myself still get sick from it so I make sure to take it in the evenings.

I experience flu like symptoms from Rebif, fever, nausea, and the worst is that ache all over, it hurts to just be.

There's times when I miss my shot and feel horrible, I believe that's withdrawal....

May not be on rebif too much longer!
 

I take my shots before bed after 2 ibuprofen and don't really have any side effects. Or I sleep right through it. I may not be on it too much longer. Just found out my ins. co wants me to pay 25%=$675.00 in stead of $50 co-pay. If I can't get this straightened out by Friday, I'll be au natural. Do I need to be indigent or scamming the government to get my health needs met? I work and pay taxes, WTH? This is the only reason I am still on the job. Had I known this when they were looking for volunteers to quit, I would have quit. They were giving packages and that would have paid my mortgage for 6 months.

I'm not too crazy about sticking myself 3x a week but I'm trying to be proactive.

Copaxone (loved it) for 2 1/2 yrs
Rebif (hated it) for 2? months - undocumented - drink 1/2 gal water/day for sides
Tysabri need I say more about no pin pricks? Wish it worked better.
LDN didn't work for me - I couldn't sleep.
Copaxone as of next week.
Oxygen Concentrator almost every night since 2011 which helps me breath thru nose/less dry mouth.
Estrogen/Progesterone but it doesn't seem to be helping. I think Progesterone 4mg is way to low.
4000mg fishoil not heping.
B12 I LIKE! Take 500mcg every moring. Better then coffee.
8000iu Vitamin D. Getting worse since I stopped taking it. Level was 110

Mochagirl13- the system sucks. Bad. I was dx with no insurance. Thankfully the new law says they have to insure my ms bs, the sucky part is it leaves me responsible for a minimum of 900 a month. And I can't work full time anymore and Ssi is denying me for part time disability so how exactly am I supposed to take care of my health? I don't see my neuro like I should because of no insurance, haven't had my blood work taken, and I've been on Rebif for over a year now, its just a poppy situation, and I keep going into flares so im concerned im injecting myself with something that's not working, but since I have no insurance I can't switch my DMD... talk about being stuck between a rock and a hard place....

Sally,

I used Avonex for over 7 years until it stopped working.

Switched to Tysabri until the cost overwhelmed me (even with insurance). The co-pays, lab costs and infusion center costs were more than what some houses would cost. (If only I could infuse myself, then I may still be using it as the drug manufacturer was very accomodating with the price.)

For several years now I have been off of all DMD's, though I tried Rebif once and got sick as a dog.

I must admit, not injecting myself or having to deal with infusions has been very nice.

...Hoping for more data on the angioplasty procedure...

-Vic

I think there is some psychologically therapeutic value in not having to inject medication everyday (or even every other day).

I agree completely.:winky:

-Vic

Testosterone - how could I forget this one! Muscles & libido in a bottle! :)

LDN sounds so positive, but I gather that it blocks opiates. Because I have so much pain now, I need sometimes to have opiates that are not blocked.

I went most of my MS journey, and now the rotten journey with my new disease, without much drugs, and am unusually reactive to many drugs. I knew, by the time I was offered Betaseron, and after I read the package label about depression, that is probably wouldn't be worth trying. By that time I was already on the Swank diet, which
helped me right away. I know that not everyone is helped by Swank, so I am not claiming that it is the answer for all; I just know that it quickly helped control symptoms
of unsteadiness and imbalance, and gradually helped the eye problem which was my
diagnostic trigger. The eye took longer to improve than the balance.

Mariel

I've heard about The Swank Diet but hadn't really researched it. I found this link.....http://www.swankmsdiet.org/About%20The%20Diet.....and it sounds very promising. If nothing else it's a healthy diet that anyone could benefit from.