Hello to all

New members should feel free to introduce themselves here

Hello to all

Postby haze » Sat Nov 19, 2011 2:00 pm

Good evening to all

I am new to the site and looking forward to meeting other's i have ms for 11yrs and i am still understanding the disease. I have two kiddies and a hubby and love my trip's to disney. I am currently trying to get my local nhs to fund the more newer drug's due to me having other disabilites and reacting to the med's. Does anyone have epilepsy along with ms or restless leg syndrome. I have listed a few of the newer drug's and i was wondering how effective they are if anyone know's or is currently taking them
BG12 orally
Leustat orally
Mbp8298 infusion
Tovaxin injection
Fingolimod orally

I look forward to hear from you all.xxxxxxxxxxxxx
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Re: Hello to all

Postby jimmylegs » Sat Nov 19, 2011 4:17 pm

hey there haze you will find lots of support here!

i can't help with pharma products but if you want to pursue anything along nutritional lines, i'm here!

welcome to TIMS
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Re: Hello to all

Postby CureOrBust » Sat Nov 19, 2011 7:17 pm

I am shocked @-) that jimmylegs didn't take this opportunity to raise the benefits of magnesium and restless leg! Magnesium Citrate really helps with my restless leg. oooo and welcome :-H
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Re: Hello to all

Postby jimmylegs » Sun Nov 20, 2011 3:00 pm

i'm sorry CoB!

eat/take magnesium, haze! (glycinate if you can find it). you could also have an iron problem, that's sometimes the case with restless legs.
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Re: Hello to all

Postby euphoniaa » Sun Nov 20, 2011 5:32 pm

haze wrote:Good evening to all

I am new to the site and looking forward to meeting other's i have ms for 11yrs and i am still understanding the disease. I have two kiddies and a hubby and love my trip's to disney. I am currently trying to get my local nhs to fund the more newer drug's due to me having other disabilites and reacting to the med's. Does anyone have epilepsy along with ms or restless leg syndrome. I have listed a few of the newer drug's and i was wondering how effective they are if anyone know's or is currently taking them
BG12 orally
Leustat orally
Mbp8298 infusion
Tovaxin injection
Fingolimod orally


I look forward to hear from you all.xxxxxxxxxxxxx


Hi haze, and welcome! I've been trying to come up with links to threads here on this site about the drugs you mentioned, but I'm in a struggle with my computer tonight. I don't take anything for MS, but I have been researching meds since my neuro insisted I consider taking one at my last appointment in May.

Anyway, since you're new here, you may not have found that there are subforums for many of the current meds and also one called the "Drug Pipeline" (see this link: drug-pipeline-f13/ ) that discusses new meds that are still in trials, etc. Most every MS drug/treatment has been discussed to death at TIMS, :smile: so I also suggest clicking on the "search" box to find more info about each one.

Here's your list of meds and a few quick links and comments about them:
BG12 orally

It appears to still be in trials. Here's a link to articles about it on the MSRC website and a quote.
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1679

BG-12 (BG00012, dimethyl fumarate) is an investigational oral therapy in Phase III clinical development as a monotherapy for the treatment of relapsing-remitting multiple sclerosis (RRMS), the most common form of MS, and in Phase II clinical development for rheumatoid arthritis (RA).

It has been discussed here a lot.
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Leustat orally

That is probably Cladribine (Oral experimental MS med – Movectro)
(Injection version for leukemia - Brand Names - Leustatin® or Livak in Europe)

Here's an article about how Cladribine was taken off the market right after it was approved:
general-discussion-f1/topic16996.html

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Mbp8298 infusion

Here's another MSRC article about how it failed the trials:

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1308
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Tovaxin injection

Here's a link to the Tovaxin Forum at TIMS:
tovaxin-f36/

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Fingolimod orally

Fingolimod is now brand-named Gilenya. Here's a link to the Gilenya Forum at TIMS:
gilenya-f43/
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I hope some of this helps. I will also suggest that if you have a very specific question, like about a specific med, be sure to put it in the subject heading and it may draw out those with the most experience.

Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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