On IVIG for 12 years, now Tecfidera or Copaxone?

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On IVIG for 12 years, now Tecfidera or Copaxone?

Postby MrsBarber » Tue Sep 13, 2016 8:56 am

I have been on IVIG for over 12 years now. MRIs and other health issues are causing that to change. I am JCV+, so no option for other infusion med.

Had a terrible reaction to Avonex when tried years ago.

Looks like my choices are Tecfidera or Copaxone...

Tried Copaxone years ago, young and single and scared. Stopped pretty quickly due to emotions. Reading here reactions to Tecfidera can be pretty strong.

I am employed full time (from home) and have two step-daughters ,who are teenagers, and a fiancee who need me to be well and functional.

Having a very hard time reading through all the likes and dislikes. Would love to hear some real world opinions and experience.
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Re: On IVIG for 12 years, now Tecfidera or Copaxone?

Postby Scott1 » Tue Sep 13, 2016 4:06 pm

Hi,

If you have JCV then Tecfidira would not be suitable ( http://www.medscape.com/viewarticle/856148) .

It's not clear what your other issues are or why IVIG was needed for such a long time. That sort of treatment is trying to reset your immune system.

All my real world experience is here - regimens-f22/topic24019.html but it's long and messy and complicated.

In simple terms I aim to a) identify any infections and clear them out particularly the less obvious ones like chlamydias, mycoplasmas or any gram positive bacterial infections etc b) use valacyclovir as I have an EBV history c) take CoQ10, aceytl-l-carnitine to help me make energy d) take Curcumin because it shifts the immune response from Th1 to Th2 (like half the drugs) and e) take N-aceytl-cysteine as it counterbalances homocysteine (an inflammatory marker). Additionally, I take a very low dose of 5mg Baclofen before bed because that is as much as I can handle and 25mg twice daily of Dantrium. Those last two are on prescription for spasticity (I was very tight) and the Dantrium really works. The only issue is it makes you feel weak for a week or so when the tightness is released and your weakness is exposed. The only answer to that is exercise like pilates to cover all the muscle groups at least three times a week.
I did take Avonex for 10 years and haven't for the last decade. Hated it and don't miss it at all. I don't obsess about diet but I avoid processed or added sugar and stay away from gluten. Breakfast is the key meal of the day (apple juice, banana, 2 eggs, and a whole avocado) and each day starts with a good quality probiotic.
That's about as real world as I can be.

Regards,
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Re: On IVIG for 12 years, now Tecfidera or Copaxone?

Postby euphoniaa » Tue Sep 13, 2016 6:30 pm

MrsBarber wrote:I have been on IVIG for over 12 years now. MRIs and other health issues are causing that to change. I am JCV+, so no option for other infusion med.

Had a terrible reaction to Avonex when tried years ago.

Looks like my choices are Tecfidera or Copaxone...

Tried Copaxone years ago, young and single and scared. Stopped pretty quickly due to emotions. Reading here reactions to Tecfidera can be pretty strong.

I am employed full time (from home) and have two step-daughters ,who are teenagers, and a fiancee who need me to be well and functional.

Having a very hard time reading through all the likes and dislikes. Would love to hear some real world opinions and experience.


Hi MrsBarber & welcome! I couldn't get Scott's link to work without creating an account, but here is a link to the Tecfidera official "Full Prescribing Information" that shows one of the warnings is a risk for PML: http://www.tecfidera.com/pdfs/full-prescribing-info.pdf

Sorry I don't have any real experiences or recommendations to share with you because I've never done any of the MS meds. But we have separate sub-forums here for each of the MS medications & treatments, so maybe you will find more real-life experiences & information there. 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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Re: On IVIG for 12 years, now Tecfidera or Copaxone?

Postby Scott1 » Tue Sep 13, 2016 7:37 pm

Hi,

Oops, it asked me to set up an account too! . I could google "Tecfedira and PML" and go straight to it. This is the gist of it-


"After a fourth case of progressive multifocal leukoencephalopathy (PML) linked to the multiple sclerosis (MS) drug dimethyl fumarate (Tecfidera, Biogen), it is becoming more widely accepted that even the "safer" immunosuppressant agents may cause dangerous adverse effects, albeit rarely, and vigilance on this issue is required, experts say.

Tecfidera, an oral agent taken twice daily, has been available for the treatment of MS since 2013. The generic compound, dimethyl fumarate, and similar products containing fumaric acid esters have long been used to treat psoriasis. As well as the four cases of PML in patients with MS, about 10 cases in patients with psoriasis have been linked to such products, Ari Green, MD, from the University of California San Francisco, told Medscape Medical News.

There have also been three cases of PML with fingolimod, another oral MS treatment thought to be relatively safe in terms of opportunistic infections.

PML is a rare but potentially fatal brain infection caused by the JC virus. It is seen mainly in immunosuppressed individuals and has been a particular problem with the potent immunosuppressant natalizumab (Tysabri), an effective treatment for MS.

Biogen acknowledged to Medscape Medical News that a fourth case has occurred but declined to disclose case details.

"We can confirm that we have reported a fourth case of progressive multifocal leukoencephalopathy (PML) from October 2015 associated with Tecfidera treatment in an MS patient that had experienced prolonged lymphopenia," a spokesperson for Biogen public affairs noted. "We are not providing case details on this particular AE [adverse event] other than through normal medical, regulatory and safety channels."

Regards,
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Re: On IVIG for 12 years, now Tecfidera or Copaxone?

Postby MrsBarber » Tue Sep 13, 2016 7:47 pm

Thank you all so much!! I appreciate the comments.
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