If you’ve read this blog, you know the drill. I have an incurable disease. Cause unknown. There is no treatment. Fifteen years in, I require a power wheelchair to get around, and I’m completely dependent on others, yada yada yada.
Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here's what I’ve tried so far:
Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.
Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.
Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.
Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.
Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.
CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.
Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.
In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:
Biotin (2015 – ): A pill. Used for one year. Didn’t help.
This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.
Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.
Or, I may stop at any moment. I don’t know. I just don’t know.
Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here's what I’ve tried so far:
Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.
Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.
Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.
Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.
Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.
CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.
Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.
In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:
Biotin (2015 – ): A pill. Used for one year. Didn’t help.
This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.
Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.
Or, I may stop at any moment. I don’t know. I just don’t know.
Posts
Have you ever thought of trying IVIg? I have a whole collection of autoimmune and neurological problems. IVIg a huge miracle for me. Unfortunately I moved to a place where it is no longer available as a paid for treatment to me. My body parts are becoming more useless, it's hard to talk, breathe, etc. I was just talking about your stair climbing wheelchair today as I was being fitted for my next super-duper power chair.
ReplyDeleteWendy, I sure wish the iBot was available to you. Maybe, one of these days…
DeleteIf nothing else,Biotin should be good for hair and nails. :)
ReplyDeleteIVIG gives me a good energy boost.
no, I still have that bald spot on the top of my head :-(
DeleteThank you for updating us - I had been wondering what you were up to and how it was going. I wish they would figure out what 4 or 5 diseases all of us with MS really have so we could sort out why some things work for some but not for others. I'm still doing middling fair with LDN and an amazing mix of supplements laid out for me by my integrative care doc. Things still progress, but slowly. Still, it can be pretty discouraging to look back a year and realize what is lost. Thank goodness people like you are writing for all of us.
ReplyDeleteof course, another frustrating aspect of all this is that we really don't know if our treatments are working or not. Maybe I would have advanced twice as quickly if not for biotin. I can't be sure. I'm only guessing.
DeleteA sentiment too many of us can echo. How strange is it that They don't even really know what MS is, much less have the first idea about how to treat it. I just don't know.
ReplyDeletethat would be helpful, wouldn't it? Knowing what MS is…
DeleteI really miss you Stren. You are an inspiration to us all.
ReplyDeleteokay, anonymous high school friend – reveal yourself!
DeleteMitch, i would keep on with the biotin, it won't hurt. Also - have you seen Rebecca Spain's talk on lipoic acid? This looks like it might be promising. My wife has started taking it, but it is hard on the stomach. Another avenue is Dr Coimbra's mega vitamin D protocol. Thousand's of folks in Brazil claim to have been helped by it. Here is an English language facebook page:
ReplyDeletehttps://www.facebook.com/coimbraprotocol/?fref=photo
Hi Mitch - I was wondering since you've been taking Biotin since 2015 if it has ever interfered with your lab test results? Biotin can skew some important lab tests and even lead to false positives/negatives and misdiagnoses. Thanks! -Amanda
ReplyDeleteAmanda, I am aware of that phenomenon, but it didn't come into play for me. I don't get a lot of routine blood testing, as a rule.
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