Bad news - MRI results

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Bad news - MRI results

Postby RedPenguins » Fri Dec 12, 2008 7:12 pm


Had MRI this afternoon. Blood/lab work yesterday.

Blood/urine is clean - except mildly anemic (nothing new there).

MRI shows new growth lesions on the left side of brain in the white matter, going across several tracks in the brain. It is enhanced. Other lesions are stable, no improvement. That was the stat reading, full report to follow on Monday.

Needless to say I'm devastated.

~keri
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Postby Lyon » Fri Dec 12, 2008 9:22 pm

oo
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Postby Jamie » Fri Dec 12, 2008 9:59 pm

agree with Bob

Mel's already decided she'd do it again.

I think the expectation of 'no more relapses' is unique to this treatment.

ultimately, Mel had 3 exacerbations last year. She's had zero this year.

It's worth it just for that.
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Postby cheerleader » Fri Dec 12, 2008 10:01 pm

Keri...
I'm so, so sorry. I know you've been feeling some relief since the procedure this summer...so something worked for you in the short term. Hang in there, and please know that we're all holding you in our thoughts.
(We've been discussing iron dysregulation in MS alot on the general and regimens threads...since your blood tests point to anemia, were you tested for your ferritin, transferrin and TIBC? If not, it might be worth it to find up what's contributing to the anemia.)

stay strong,
AC
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby steven73 » Sat Dec 13, 2008 3:50 am

I'm so very sorry Keri. You and I were sort of partners in the approval process and I remember the excitement with which we compared our progress, via email, in dealing with the JH staff and our BCBS people! Goodness, the hope we were filled with back in June seems like a lifetime ago!

I guess if there's any consolation to be given, it's that if you decide to do this again, you tolerated this treatment unbelievably well and maybe if you go back with a higher dose in mind, it might work.

I guess some of the earlier patients are still doing fairly well? That Richard Bauer guy is reported to be jogging 2.45 miles a day and studying radiology at JH.

Does anyone have a clue how the group of 29 are doing as a whole? Keri's relapse makes me think that Copaxone isn't the life raft we'd hoped it might be. I'm glad it has no side effects or I'd be bummed about doing it every evening.
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Postby mommasan » Sat Dec 13, 2008 8:23 am

I'm so disheartened, Keri. Keep all of your options open. Look into the estriol + copaxone studies. Very effective for RRMS women. There are alternative practitioner out there who prescribe it. Consider Tysabri and Rituxan. Don't give up. Just regroup. There may not be a win, but a truce might be a good compromise.

I wonder... what is the bottom line? Months ago, I poured thru the Gladstone data and Kerr's data of the original 9. Couldn't find any corrolation between length of disease activity and reactivation or severity of EDSS and reactivation. As Bob suggested, could one important factor be body weight and proportionate dose given? The body weight of patients wasn't mentioned in any study.

Sandy
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Postby Lyon » Sat Dec 13, 2008 8:26 am

oo
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Postby chrishasms » Sat Dec 13, 2008 10:02 am

Well as many of you know I have reactivated as well but I think you all might be on to something. I wasn't the best at taking my Copaxone either.

I still have lesions shrinking, or stable, even with this new itty bitty one I got.

Also keep in mind, some of the folks who did this fired off some lesions, and the body resolved them, and they never came back. It's our hope at JH that's the case with me.

I agree with Mel and Jamie though. If in March I go back to JH and I have activity, or signs of something we missed, I'm ready to be nuked again.

I've been saving my money ever since I had this treatment to make sure I could do it again.

I got sick as hell. If I'm willing to do this again knowing what I know now, well it says something for HiCy.
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Postby cheerleader » Sat Dec 13, 2008 10:13 am

keep in mind, it takes copax about six months to retrain the t-cells, that's with consistent daily injections...
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Sat Dec 13, 2008 10:38 am

I'm not knocking you, but very curious as to where you found that out from. I would love to read the article!!

I missed a week at one point because of a screw up with my RX. I always felt just a bit different after that week as well.

HMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.
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Postby cheerleader » Sat Dec 13, 2008 11:16 am

Hi Chris-
no offense taken. My husband's neuro explained it to us at the beginning of his therapy. She said it was important to be consistent, because the GA was acting very specifically on myelin reactive t-cells as an antigen. She said that it would be some time, a matter of six months, before this change took place and the myelin reactive t-cells would be changed. She wanted to make sure Jeff would be compliant. GA does not affect the other b or t cells.... only the Th2 cells that go after myelin. That's why people don't have higher rates of cancer or brain infections while on copax. But it's not fun to use. It means a daily injection of stuff that stings and may cause a variety of reactions. Here's a study which explains the process.... it's dense, but explains the time frame and how GA works.

Glatiramer acetate (Copaxone®) induces degenerate, Th2-polarized immune responses in patients with multiple sclerosis

We examined the effect of daily subcutaneous injections of GA on antigen-specific T-cell responses in patients with MS. GA appears to function as a universal antigen, inducing primary in vitro proliferation of naive T-cell populations both in patients with MS and in normal healthy controls. Daily subcutaneous injections of GA caused a striking loss of in vitro responsiveness to the GA that was accompanied by immune deviation to a more Th2 type of response. The surviving GA-reactive T cells exhibited a greater degree of degeneracy as measured by cross-reactive responses to combinatorial peptide libraries. GA is, to our knowledge, the first agent effective in the treatment of an autoimmune disease that appears to alter immune function by engagement of the T-cell receptor and may be useful in a variety of autoimmune disorders in which immune deviation to a Th2 type of response may be desirable.

In summary, GA does not appear to have a direct effect on the preexisting memory compartment of T cells, and it does not appear to be selectively cross-reactive with MBP. Instead, GA treatment induces a GA-specific Th2-polarized T-cell repertoire that recognizes antigen in a more degenerate fashion. This may be sufficient to mediate bystander suppression at many sites of inflammation in the CNS of patients with MS, leading to decreased disease activity.


http://www.jci.org/articles/view/8970

Some doctors are reluctant to start people with more aggressive RRMS on Copaxone, as it seems to take six to nine months to reach full effectiveness.

More Detailed Information on Copaxone

Type of MS and Severity: Copaxone is for relapsing-remitting MS (RRMS).

Effectiveness: Pretty similar to all of the CRABs -- a 29% reduction in annual relapse rate in a two-year trial. However, a 10-year follow-up study seems to indicate that long-term use of Copaxone has very good clinical results. People who stayed on Copaxone for 10 years had an 80% reduction in relapses (in other words, they went from having 1.5 relapses per year to one relapse every 5 years). Comparing people who used Copaxone continuously for 10 years to those who quit after an average of 4.5 years, 91% of the 10-year Copaxone were still walking unaided, versus 50% of the ex-Copaxone users. In addition, only 38% of the long-term Copaxone users demonstrated worsening of disability, versus 72% of those who had quit. It should be mentioned that a large number of people dropped out of this study, so the results could be pretty skewed in favor of Copaxone (as the people who dropped out may have done so because they felt that Copaxone wasn't working).

http://ms.about.com/od/treatments/a/Copaxone.htm
Last edited by cheerleader on Sat Dec 13, 2008 5:23 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby RedPenguins » Sat Dec 13, 2008 3:24 pm

Well, the first dose of IVSM is almost finished.

I'm still feeling just devastated and in a daze, I suppose. I feel like "the cancer's come back.....but I've already had the best treatment available and I didn't lick it" so to speak.

Sandy, Tysabri is no longer an option - b/c I am immuno-compromised from the HiCy, I couldn't have Ty again. Don't know much about rituxan....but when I first got sick and learned that chemo was an option for tx, I swore I wouldn't do it (I guess from watching my mom go thru rounds and rounds of chemo)....oddly I jumped on HiCy b/c it was a one time blast.

The interferons are also not an option for me, due to history of severe depression.

I am still happy that I got 5 months of no deterioration or worsening....5 months of unadulterated bliss - as Chris has said before. Would I do HiCy again? You bet! (even though my hair is starting to grow back nice and thick!!)

In the meantime, I will talk to JH on Monday....though I know they don't have huge experience with this so far.... and with most things MS, we just dont know - some people will heal from this type of new activity and never have it again, others will continue down an ugly path.

I had just hoped that I could get a few years of peace with HiCy (or even a year, sheesh, I don't want to sound greedy!)...

~Keri
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Postby Lyon » Sat Dec 13, 2008 6:02 pm

oo
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Postby RedPenguins » Sat Dec 13, 2008 10:22 pm

I agree with a lot that has been said here.

My symptoms seem to be worsening....and I am still just besides myself that it isn't a pseudo-exacerbation.

I would/will do this treatment again in a heartbeat if it comes down to it. Maybe in time they will refine the process and have more informaton and better solutions and follow-up. I dunno though.

In 4 months since I've been in Copax, I have missed 2 doses. Both times that happened, I was sick and had fallen asleep before I took the meds. On another note, though, I HATE HATE HATE the copax as I have bad reactions to it every time - though the last week or so it has gotten better - still not good - but a little better.

I fear I may have to remain on copaxone forever at this point. I had gone on Tysabri to avoid that - and since Ty seems to have better results than copaxone. But now Ty is off the table.

My head hurts so much. I wish this was all a bad nightmare. In a few weeks, it will be one year since I've gotten sick. If I wasn't in this exacerbation, I would be saying - It's wonderful to say goodbye to 2008 and welcome in 2009, in a fresh start. But now, not so much.

Sorry to whine.

k
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Postby Sharon » Sun Dec 14, 2008 9:11 am

Whining is allowed!!

I am so sorry that you are on the "slippery slope" again.
:cry:
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