NeuroTalk Support Groups - Happy With Meds?

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Happy With Meds? (https://www.neurotalk.org/multiple-sclerosis/142592-happy-meds.html)

mochagirl13

01-12-2011 11:08 AM

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:

Quote:

Originally Posted by AynaDee (Post 734054)

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

Friend2U

01-12-2011 11:13 AM

Rochelle,

Quote:

Originally Posted by Twinkletoes (Post 733450)

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.

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

SallyC

01-12-2011 12:13 PM

Thanks, good info!!!:)

Quote:

Originally Posted by Friend2U (Post 734183)

AynaDee

01-12-2011 02:34 PM

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....

mochagirl13

01-12-2011 06:04 PM

May not be on rebif too much longer!

Quote:

Originally Posted by AynaDee (Post 734276)

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.

EddieF

01-12-2011 08:35 PM

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

AynaDee

01-13-2011 10:58 AM

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....

Victor H

01-13-2011 11:14 AM

Quote:

Originally Posted by SallyC (Post 732542)

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:

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

Kitty

01-13-2011 11:20 AM

Quote:

Originally Posted by Victor H (Post 734571)

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

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

Victor H

01-13-2011 11:27 AM

Quote:

Originally Posted by Kitty (Post 734574)

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

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