Running out of options - could use some advice!

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Running out of options - could use some advice!

Postby lmacalus » Mon Apr 06, 2009 2:56 pm

New to this forum - diagnosed nearlly 8 yrs ago - relasping/remitting... progressing...
Avonex, Copaxone, Beta Seron, & Rebiff slowed things done some - but the side effects were not tolerable. Still pulsing IV solumedrol but it's not as effective as it used to be...
Need to make a change but am terrified of the options - 1)Chemo or 2) Tysabri...

I am at home now (on disability) with a 2 yr old... looking for someone - anyone in a similar situation to weigh in! Please!
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Postby Loobie » Tue Apr 07, 2009 2:57 pm

I am on Tysabri. I had a similar situation with Avonex. You have to be concerned, of course, about PML. But what I did was take published (by whom I'm not sure) numbers of the people on Tysabri vs. the PML cases. If I had odds like that in anything I'd take it, so I went for it. Could I be the next PML victim? Sure, but I sure hope not. I don't know what to say to quell your fear, but I don't know if I'd be terrified with those odds. I know you suffer from side effects, but the stuff like HiCy (chemo) is short course, high dose, and you're not sick for long. PM Chrishasms and ask him how long he was sick for. I don't want to put words in his mouth, but I followed his blog pretty close when he was getting it, and I don't remember him feeling sick for very long in the grand scheme of things.
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Postby jimmylegs » Tue Apr 07, 2009 3:28 pm

lm, do you do anything diet/lifestyle/nutrition-wise?
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Postby lmacalus » Tue Apr 07, 2009 6:59 pm

Yes - we try to eat right - well balanced, little dairy & red meat, lotts of fish, etc. Supplements too from multi vit. to extra c, D, etc. Still excersing as best I can.. walking, etc. and generally keeping up with a 2-yr old!
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Postby jimmylegs » Wed Apr 08, 2009 5:40 am

sounds good! got any minerals in the regimen? have you had a look at nutrient depletion effects potentially associated with any of your long term meds?
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Postby lmacalus » Wed Apr 08, 2009 8:51 am

I have not but am open to it! Reality is I never felt as good as when I was on prenatal vitimins!... Is the asssessment something my nureo can/should do or do I see someone else/
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Postby jimmylegs » Wed Apr 08, 2009 9:22 am

i'll see if i can get my hands on nutrient depletion info related to
Avonex, Copaxone, Beta Seron, & Rebiff slowed things done some - but the side effects were not tolerable. Still pulsing IV solumedrol
and anything else you think could be relevant..

check out this list http://www.direct-ms.org/supplements.html

notes on the various sections..

essentials:
-for the magnesium part, mag citrate is the least likely form to give you the poops..

vitamins:
-sounds like your multi plus extra C, D, etc probably has you on the right track
-you may want to add a b50 complex each day depending on the b-complex amounts in your current multivitamin

minerals:
-see if you can get a good multimineral that covers the bases
-zinc is important, it's low-normal in ms patients esp. female, esp. childbearing, you want your level to be 18.2 (that's in SI units)
to match healthy controls. if you optimize your zinc, liver can convert fatty acid byproduct (ammonia) to uric acid, and uric acid is a killer antioxidant (you want your uric acid to be up around 300, again that's in SI units)
-my current multi vit/mineral has no copper... i don't know much about copper yet but am in the process of investigating
-apparently you can get the daily selenium requirement from 3 brazil nuts

HTH!
JL
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Postby cheerleader » Wed Apr 08, 2009 12:42 pm

lmacalus wrote:I have not but am open to it! Reality is I never felt as good as when I was on prenatal vitimins!... Is the asssessment something my nureo can/should do or do I see someone else/


Imacalus-
Jimmy helped us get my husband back to stability with supps...he's over two years with only a tiny flare, no progression. Your GP can do blood tests to check nutritional/mineral status. Not all neuros put as much credence in the diet/supplement angle. But it can help. Especially since you made the prenatal vitamin/pregnancy connection.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Apr 08, 2009 1:43 pm

yea my neuro is a little bit dismissive about that stuff. but he's not a nutritionist so yea. lol!
fortunately my GP is receptive, she lets me request various nutrient tests, and advises me which ones are not covered.
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Postby lmacalus » Wed Apr 08, 2009 2:39 pm

Thank you - other than the items you indicated in the earlier message which tests do you reccomend - my MD will pretty much let me have anything I ask for... he doesn't seem to put much creedence in anything that's not sponsored by BIG Pharma, but still if I ask I seem to get my way...
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Postby jimmylegs » Wed Apr 08, 2009 3:35 pm

sure, no probs :) off the top i would say
-keep your b12 over 500 pmol/L
-keep d3 between 100-250 nmol/L (test the 25hydroxyvitd3, not the 1,25dihydroxyvitd3)
-copper=16.8µmol/l in healthy females, you want to keep your copper to zinc ratio in line to protect against all kinds of disease states. low or high copper = bad news.
HTH!
JL
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Re: Running out of options - could use some advice!

Postby AndrewKFletcher » Thu Apr 09, 2009 8:56 am

Inclined Bed Therapy 1s safe, non-invasive, free and most of all it works.

Andrew


lmacalus wrote:New to this forum - diagnosed nearlly 8 yrs ago - relasping/remitting... progressing...
Avonex, Copaxone, Beta Seron, & Rebiff slowed things done some - but the side effects were not tolerable. Still pulsing IV solumedrol but it's not as effective as it used to be...
Need to make a change but am terrified of the options - 1)Chemo or 2) Tysabri...

I am at home now (on disability) with a 2 yr old... looking for someone - anyone in a similar situation to weigh in! Please!
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Postby catfreak » Thu Apr 09, 2009 11:45 am

Imacalus,

I am doing Tysabri also and like Lew says it has risk's but I was one I was willing to take. 1 infusion so far and feeling much better that when on Rebif :evil: .

I also, with the help of Jimmylegs, have started a routine of vitamins, mineral and supplements. My diet could be better and I should get more exercise but that is something I struggle with.

Best of luck with whatever you decide.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby jimmylegs » Thu Apr 09, 2009 12:03 pm

lm, did you get any irritating hard to scratch itch sensations while you were on prenatal supplements?
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Postby lmacalus » Thu Apr 09, 2009 3:15 pm

No itching on the supplements but have been having them lately - even managed to unintentionally rip a nice hole in my right leg.

Looks like my MRI is getting scheduled, so I'm placing the call for any added bloodwork as well. WE'll see what they can find.

You did mention a B-vit too and I LOOOOVE those! Such a great boost that helps me motor thru the am and actually pick up the kitchen or get some laundry started.

I am taking currently -
1 Multivit.
1 B Complex
2 C's
1 e capsule
2 Calcium tablets
Grapseed extract
and I think it is folic acid
as well as a humungus fish oil capsule

That and a glass of OJ & I'm pretty full!

Primrose oil was reccommened by one MD, but I had a bad Rxn too it, complete with pufffy/swolen yes, etc so we d/c'd that and the rxn resolved.

So far I have did get orders for a LFT to make sure the Rebiff is completly out of my system & all is back to normal now, and CBC b/c while on Rebiff that got ALL screwy too - very low red clood count showing anemia except that my iron scroes were perfect so not anemia.. and my BP dropped to the point that I was basically fainting & falling (not good) the one reading was 72/54 & that was while reclined.
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