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
LADYDI0317
β€’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
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19 Replies
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Lucycg profile image
Lucycg

Do not give up!!

Thre is a light of hope

LADYDI0317 profile image
LADYDI0317β€’ 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
LADYDI0317β€’ in reply toKKlynch5096

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

LADYDI0317 profile image
LADYDI0317β€’ in reply toKKlynch5096

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

LADYDI0317 profile image
LADYDI0317β€’ 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
LADYDI0317β€’ 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
LADYDI0317β€’ 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
LADYDI0317β€’ 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
SWEETCATβ€’ in reply toLADYDI0317

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

LADYDI0317 profile image
LADYDI0317β€’ 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
itasaraβ€’ in reply toSWEETCAT

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

LADYDI0317 profile image
LADYDI0317β€’ in reply toitasara

I also get the indentation on both legs

LADYDI0317 profile image
LADYDI0317β€’ 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
KatRoc07β€’ 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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