I am here too Christine
 

glad to find this hope others do too!!!!!!!!!!!!!!

Glad to see you made it Christine!

Hi Cheri
 

So sorry to hear about the tradedy you posted. Life is too short and we sometimes taked it for granted. It makes our problems seem at bay when we hear of others suffering so.
I am sorry about your problems too, what happended? are you in need of a cane?? of was it a one time fall?

I use a walker all the time and a scooter outside. I wanted to ask your professional insight. What do you think of stem cell using adult stem cell. I have one lesion in the spinal cord that is about 1 and 1/2 inches long between the shoulder blades then one small one tiny one in the brain. I have lost so much mobilty and have been tested for devics and am clear of that. My doctor said in the future if they perfect stem cell i would be a canidate for it. That gives me hope!!! I need hope as I am on 1/2 dose novantrone and copaxone treamtent. I don't know if he is going to continue novantrone anymore as we need to discuss that now that I am on copaxone. I jsut want to get better. I have had problems and he has given me two doses of steroids that start with a "d". can't remember exactly the name but they are remarkable. How I wish there was something out there like steroids that we caould take continually. I can do the bike peddalar when I am on them and feel so much stronger. What a difference.

well I look forward to your insight and appriecate your freindship may be someday we can meet. Have you heard anything from Mary??? Hugs, Christine

Mary? Not sure about whom you are speaking.

I fell last August (foot drop) and broke my foot in 9 places. Because I cannot feel that foot normally (due to the MS) walking on it to rehab it, caused multiple additionoal fractures (+/- 36). I've been on crutches for a year. In an AFO since February. A bone growth stimulator for three months starting in February.

The bones are thought (by the foot surgeon, orthopedist, neurologist and PCP) to be so porous because of two years of IVSM while I was on Avonex several years ago. Despite Fosamax, Calcium, D, Magnesium, Repeated MRI's of the small bones of the foot, hand, wrist, ankle, and ribs show continued deterioration of bone. I have been told that high dose steroids can see this after effect for years in people my age and gender.

BTW: there is encouraging data recently released on the effectiveness of Copaxone and Novantrone used together.

The bones are thought (by the foot surgeon, orthopedist, neurologist and PCP) to be so porous because of two years of IVSM while I was on Avonex several years ago. Despite Fosamax, Calcium, D, Magnesium, Repeated MRI's of the small bones of the foot, hand, wrist, ankle, and ribs show continued deterioration of bone. I have been told that high dose steroids can see this after effect for years in people my age and gender.

How old are you? I am 50. I am so sorry you are suffereing. Wil you need to use a cane or something like a walker? Is there any warning that you are going to fall?

What treatment are you on now?


Cherie, I have been on continue steroids and hate them because I fear what you are talking about in weakness. I used to get monthly dose IV but now oral each month since June. My dr said this is the last round. So he hopes it will help. Ijust started copaxone a few weeks ago and heard to be patient it takes at leat 3 months. Hope to get better.

BTW: there is encouraging data recently released on the effectiveness of Copaxone and Novantrone used together.[/QUOTE]

Christine,
I'll be 54 next week. The thinking by many of the MS neuros on the Consortium is that it is acceptable to give women at or near menopause steroids to treat a flare but not to give more than two or three grams a year if possible. At the same time they try to support the bones by giving Fosamax, calcium, D, magnesium.

I've been watching for some written guidelines to come out on this protocol but have not yet seen it. When it is weritten or I come across it, I'll try to post here with the citing.

There are other meds now coming into favor for treating flares that do not have a bone wasting component. CellCept is one of those. It came to us from the transplant arena as an antirejection drug and is taken orally twice a day for 6 months to a year. Main side effect appears to be loosing of stool for the first few weeks (for some that's a real plus). In the old BT, xo had several articles posted on the validity of that therapy. My current neuro is now using it in most of his female menopausal patients rather than depending on steroids.

thanks!!!
 

How does cell-cept work o the flare, with steroids I feel great, lots more energy etc.. I could become a steroid junkie, does cell-cept give the same benefits? Can it be used with Novantrone?? I kow I need to check with my nuero, but just asking basic questions.

Here is a dated article on CellCept when it was approved to help people with Lupus. At the time this article was written, it had just started Phase III trials in MS for inflammation reduction.


Drug Offers Help for People With Lupus
October 25, 2003
By THE ASSOCIATED PRESS
Filed at 10:40 a.m. ET

ORLANDO, Fla. (AP) -- A drug used to prevent organ rejection in transplant patients works as well as chemotherapy for treating kidney failure from lupus but with fewer side effects, a study shows.
Side effects from chemotherapy, including hair loss, anemia, loss of appetite and nausea, sometimes prevent some patients from completing their treatment.

``Having an alternative that provides fewer side effects is a very important thing for patients,´´ said Sandra C. Raymond, president and chief executive officer of the Lupus Foundation of America Inc. She noted there haven´t been any new drugs for lupus in 30 years.

The research compared the effectiveness of oral doses of CellCept, which suppresses the immune system, with chemotherapy, the standard treatment for patients with lupus nephritis, a serious complication of lupus.

``Our study shows tremendous promise,´´ said the lead researcher, Dr. Ellen Ginzler of the SUNY Downstate Medical Center in New York. ``It can be an alternative standard of care.´´
The research was to be released Saturday at the American College of Rheumatology's annual meeting in Orlando.

Lupus is an inflammatory disease that affects between 500,000 and 1.5 million people in the United States, primarily women between ages 18 and 45. About half of lupus patients get lupus nephritis, which in its most serious form can cause kidney failure.

The 130 study participants received either CellCept or intravenous doses of cyclophosphamide.

In the CellCept group, there were 14 complete and 21 partial remissions compared to four complete and 14 partial remissions in the chemotherapy group.

Fifty-two of the 66 patients on CellCept completed the six months of treatment, while only 38 of the 64 patients on chemotherapy finished their treatment.
Severe infections also were less common in the patients taking CellCept, according to the research sponsored by the Food and Drug Administration.

Martha Emerson, a 52-year-old homemaker in suburban Orlando, began taking CellCept four months ago after chemotherapy and other treatments failed. The only side effects she has had are mouth sores and difficulty getting to sleep.

``It´s not a miracle drug, but it´s a very big help,´´ she said.

I am not at home with my files and will not be for a couple of weeks, but you should talk this over with your neuro.

Hi Christine,

I am wannabe. I wannabe better but for right now that's not one of my wannabe options. So I guess I wannabe a movie star. :)

Was the steroid decadron? I have heard good things about it from someone in my MS support group.

Good luck with the copaxone. It takes a while to work but it seems to be standing the test of time as a solid treatment option.

Hello wannabe
 

Wannabe; we all want to be well!!! I remember the old me and have hope for the future. I try so hard to think what can I do not what I can't!!! Anyway I love these steroids; Dexamethson. what a difference they make. I know they are not the best for me as the sdie effects are probably harmful over use as I am sure Cheri can attest to with her weatlh of knowledge, but for now they are helping. thanks for the info on Copaxone, I have had 3 weeks and know to be patient, if it could stop the progression and attacks that weakned me so.

Cherie you mentioned Cell-cept and I am really interested in that, would that be instead of Novantrone?
Hoep you all have a great day and God's richest blessings!!! Hugs, Christine

Cherie, I hope to meet you sometime.