Lady DI - I am new to this site . - My MSAA Community

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Lady DI - I am new to this site .

LADYDI0317 profile image
19 Replies

I was diagnosed with MS 23 years ago. I have had many Exacerbation 's & have used all the Injectable Medications over the years. I can't use Interferons anymore because it gave me Liver Disease. I have even done Novantrone Chemotherapy for 3 1/2 years & had 4 treatments of Tysabri when it first came out. Then I got a call at 9:00 pm from my Neurologist telling me to stop it immediately because of PML. I'm having an Exacerbation right now & I usually do IV Solumederol but after my first day I had a severe reaction to it so now I have to go to see an MS Specalist in Charleston but have to wait until October because he is so booked up. I walk with a cane & sometimes use a wheelchair.

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LADYDI0317 profile image
LADYDI0317
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19 Replies
Lucycg profile image
Lucycg

Do not give up!!

Thre is a light of hope

LADYDI0317 profile image
LADYDI0317 in reply toLucycg

Thanks for the encouraging words, I really appreciate it ! But I'll never give up because I have to much to live for & so many more thing's that I want to do. And I love to travel with my husband. Thanks again for your kind words.

KKlynch5096 profile image
KKlynch5096

What about Copaxone? It is not an interferon.

LADYDI0317 profile image
LADYDI0317 in reply toKKlynch5096

I'm sorry I forgot to mention that I am on Copaxone now for about 8 years.

LADYDI0317 profile image
LADYDI0317 in reply toKKlynch5096

I'm sorry I forgot to mention that I have been on Copaxone for about 8 years now.

LADYDI0317 profile image
LADYDI0317 in reply toKKlynch5096

I've now been on Copaxone for 8 years now. Thanks for your suggestion .

itasara profile image
itasara

Lady Di, have you looked into Copaxone? You didn't mention it in your post. It is the one and far as I know only MS drug that is NOT an interferon medication. I have been on it for 10 yrs so far and other than minor local skin reactions which are rare, I so far haven't had any other major problems with it. Ask your current neurologist if he/she hasn't mentioned it which would surprise me if it were not suggested.

LADYDI0317 profile image
LADYDI0317 in reply toitasara

I'm sorry I didn't mention that I have been on Copaxone for about 8 years now, I'mdoing okay have had a few EXACERBATIONS.

LADYDI0317 profile image
LADYDI0317 in reply toitasara

I'm sorry I forgot to mention that I've already been on Copaxone for about 8 years now !

Royjr profile image
Royjr

Lady DI, that's tough. I wish you well expecially in this heat wave we going through on the east coast. Charleston is a great place for MS treatment but with that it makes it hard to get an appointment, but when you do they're great. Good luck and I wish you well. Keep us informed on how you doing.

LADYDI0317 profile image
LADYDI0317 in reply toRoyjr

Royjr,

I'm sorry I did forget to mention that I have been on Copaxone for about 8 years now. I was doing OK on it until I'mnow having this EXACERBATION. Thank you for the well wishes and I will keep you informed. Thanks again I appreciate it.

SWEETCAT profile image
SWEETCAT in reply toLADYDI0317

Good luck,I also use copaxone but hate the lumps left by them..😎

LADYDI0317 profile image
LADYDI0317 in reply toSWEETCAT

Same thingwith me I get those lumps that sometimes last for months, but no big deal ! I can live with them.

itasara profile image
itasara in reply toSWEETCAT

Copaxone has left indentations on my thighs over the years. Not too noticeable depending on the lighting

LADYDI0317 profile image
LADYDI0317 in reply toitasara

I also get the indentation on both legs

LADYDI0317 profile image
LADYDI0317 in reply toRoyjr

Yes this heat has taken a toll on me but I try to stay in the AC as much as possible. Thanks for the well wishes when I get to Charleston I really appreciate it. Good luck to you also.

jburke665 profile image
jburke665

When copaxone stopped working for me I tried Tsyabri but I was allergic so I went on Novantrone. Novantrone is a chemo you get every 3 months and that worked great but there is a lifetime amount you can take. I was off of it for about 6 years and now I am on Aubagio.

KatRoc07 profile image
KatRoc07 in reply tojburke665

Are you still Aubagio? Have you experienced side effects? I have been on it for a year and my skin has definitely changed.

LADYDI0317 profile image
LADYDI0317

I never been on tried Aubagio .

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