RRMSers: What meds are you on?

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RRMSers: What meds are you on?

Postby Anonymoose » Tue Mar 12, 2013 7:55 am

I'm interested in identifying a pattern of endocrine dysfunctions in RRMS, SPMS, and PPMS. It could be that these dysfunctions are related to the progression of MS.

If you would, please share the medications/supplements you take for any condition. Also, is your blood pressure normal, high, or low?

Many thanks!
Last edited by Anonymoose on Tue Mar 12, 2013 1:09 pm, edited 1 time in total.
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Re: RRMSers: What meds are you on?

Postby bananana » Tue Mar 12, 2013 12:40 pm

I take Refif 44mcg. Also I take various supplements: Vit D, a multivitamin, ginko biloba, EGCG, turmeric, fish & flax oil. Oh, and naproxen to ward off the dreaded flu-like Rebif side effects.

I have low blood pressure

-b
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Re: RRMSers: What meds are you on?

Postby Anonymoose » Tue Mar 12, 2013 1:50 pm

bananana wrote:I take Refif 44mcg. Also I take various supplements: Vit D, a multivitamin, ginko biloba, EGCG, turmeric, fish & flax oil. Oh, and naproxen to ward off the dreaded flu-like Rebif side effects.

I have low blood pressure

-b

Thank you so much! Did you have low blood pressure before Rebif? I think it might tinker with ACTH production (increase at first and then lessen) and raas. This might cause low blood pressure. The beta interferons seem to be protected from adverse side effect research. I can find random hearsay about beta interferons causing adrenal exhaustion but nothing better than that.

Reading your forum name always gets that muppet manamana song stuck in my head. :P
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Re: RRMSers: What meds are you on?

Postby bananana » Tue Mar 12, 2013 11:44 pm

I'm pretty sure the low blood pressure started with the Rebif. Pre-Rebif, whenever I got my blood pressure checked at the doc's office, no one said anything. Post-Rebif, the nurse always seems to have something to say after taking my vital signs. Like "wow, your blood pressure is low." or "did you know you had low blood pressure?".

Interesting theory, anon. I had never really connected the 2, but I wouldnt be surprised if the Rebif was causing it. It causes all kinds of ridiculous side effects EMD Serono warns me about in those mailers they send to my mailbox every month. I started having migraines (never had them before) post-Rebif and the neuro said Rebif can cause migraines in some people.

Frankly I hate taking meds of any kind. I dont even like taking painkillers for pain. But the Rebif seems to be working for me (knock on wood!) so its hard to argue with that. I hate being sick more than I hate taking Rebif. Speaking of which.... time for my shot... :-S
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Re: RRMSers: What meds are you on?

Postby Anonymoose » Wed Mar 13, 2013 8:48 am

Thanks again b. Very interesting!

You might want to keep an eye on or ask your neurologist about that study on adding acth to your beta-interferon/rebif regimen. I hope it keeps working for you!
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Re: RRMSers: What meds are you on?

Postby LR1234 » Wed Mar 13, 2013 8:58 am

Low BP 90/50 on average.
Got Hashimotos and Endometriosis (had them before MS)

I take Copaxone, LDN and supps I find help: Q10 200mg, Folic acid 800ug,B12 1000ug Inosine 500mg, Inositol/Choline 250mg, Asprin 150mg as well as blood thinner injectable daily, Zinc/Vit C combo 8mg Zinc, (180mg Vit C), Vitamin D 5000iu
Last edited by LR1234 on Sat Mar 16, 2013 3:35 am, edited 1 time in total.
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Re: RRMSers: What meds are you on?

Postby Anonymoose » Wed Mar 13, 2013 10:07 am

LR1234 wrote:Low BP 90/50 on average.
Got Hashimotos and Endometriosis (had them before MS)

I take Copaxone, LDN and supps I find help: Q10 200mg, Folic acid 800ug,B12 1000ug Inosine 500mg, Inositol/Choline 250mg, Asprin 150mg as well as Arixtra daily, Zinc/Vit C combo 8mg Zinc, (180mg Vit C), Vitamin D 5000iu

Thank you, LR. That's interesting too! I couldn't find anything about copaxone and acth or raas but I did find this.
http://www.sciencedirect.com/science/ar ... 9112005454
Chronic mild stress eliminates the neuroprotective effect of Copaxone after CNS injury
Igor Smirnova, James T. Walsha, b, Jonathan Kipnisa, b, ,
a Center for Brain Immunology and Glia, Department of Neuroscience, School of Medicine, University of Virginia, Charlottesville, VA 22908, USA
b Graduate Program in Neuroscience and Medical Scientist Training Program, School of Medicine, University of Virginia, Charlottesville, VA 22908, USA
http://dx.doi.org/10.1016/j.bbi.2012.12.015, How to Cite or Link Using DOI
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Abstract
Copolymer (Cop)-1, also known as glatiramer acetate, is an active compound of Copaxone, a drug widely used by patients with multiple sclerosis (MS). Copaxone functions in MS through two mechanisms of action, namely immunomodulation and neuroprotection. Because the immune system is suppressed or altered in depressed individuals, and since depression is often associated with neurological conditions, we were interested in examining whether the neuroprotective effect of Copaxone persists under conditions of stress-induced depressive behavior. We exposed mice to unpredictable chronic mild stress for 4 weeks and then treated them with three doses of Copaxone at 3-day intervals, with the last dose given immediately before the mice underwent a crush injury to the optic nerve. Whereas nonstressed mice exhibited a strong neuroprotective response after Copaxone treatment, this effect was completely absent in mice that underwent chronic mild stress. Interestingly, when Copaxone was combined with Prozac, the neuroprotective effect of Copaxone was regained, suggesting that chronic mild stress interferes with the neuroprotective effect of Copaxone. These results may shed a light on mechanism of action of Copaxone and lead to new combined therapies for neurodegenerative and neuroinflammatory disorders.

I wonder if copaxone doesn't interfere with ACTH processes to some extent. When stressed the ACTH response overwhelms the copaxone??

Maybe the reason why the DMDs only work for RRMS is because in this phase, the disease is driven by stress hormones. In later stages it's driven by a different dysregulation?? (refer to Leonard's thread...currently focusing on metabolic disorders)

Don't stress!
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Re: RRMSers: What meds are you on?

Postby LR1234 » Thu Mar 14, 2013 6:17 pm

Thanks for the info, I always follow ur posts with great interest.
All my relapses have been triggered by stressful arguments or work!
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