Can Biotin do the magic of Remyelination in Multiple Sclerosis?

While i have stopped injecting myself with Avonex weekly once till further evaluation is done for next DMT for multiple sclerosis, my neurologist feels that i should take Biotin tablets.

In my case i have lot of demyelination in CNS and brain. When we have lot of lesions around the brain the cells require lot of energy to perform simple activities. In simple ways, when we perform work such as walking the lesions flare up leading to fatigue and weakness.

Large doses of Biotin can help in increase in energy levels and to repair the myelin. 

Currently i am on 150 mg of biotin daily and going on for a week . So far i have not felt any change that i can appreciate. But the current research and clinical trials on Biotin for Multiple Sclerosis is promising.

I hope by continuing Biotin for few more days, i should positively note some good effect on my fatigue and imbalance. This will happen if my remyelination happens and that will be wonderful.

Currently Biotin is marketed as beauty and health vitamin tablets to help grow hair and getting a glowing skin.

Hope biotin will be a inner healer of damaged brain nerves for MS patients and for others it will be external factor of growing hair and beauty. Anyways if it happens it is beauty inner side and outer side. :-)

Stopped Avonex, Next Evaluation for Natalizumab and Ocrelizumab

As i had written in my previous post, I am having a tough time with fatigue and weakness in both limbs. I was admitted for a week and administered Methylprednisolone iv for 5 days.

Though my MRI does not show any new lesions since 2016, my walking, imbalance and tremors are not stable. It is getting worsen day by day. Apart from this I also had my part of UTI and low hemoglobin levels to add to it.

Had few antibiotics for UTI and iron shots for getting my hemoglobin levels to the range. Still my hemoglobin levels (10.3) are not anywhere near 13 normal range.

Coming to keep my Multiple Sclerosis in control, my neurologist was evaluating me for Natalizumab (Tysabri) or Ocrelizumab (Ocrevus). Before starting any of these, I need to perform few tests as below.

JC virus anti body, JC virus CSF (Cerebro Spinal Fluid) & JC virus serum.

I was thinking at least I will be lucky to be JC virus negative, but as feared I turned out be JC virus positive. Though I am not able to make sense about the pathological reports that has 34.50 ml/copies of JC virus found. Not sure whether it is good amount of JC virus present or less.

Anyways my hope for going to Natalizumab or Ocrelizumab started fading since these results are out. My doctor informed me that there is a huge risk of getting PML (Progressive multifocal leukoencephalopathy) which is fatal viral disease.

Mutiple Sclerosis patients testing positive for JC virus are at huge risk if they are on Natalizumab / Ocrelizumab  as they can be infected by PML.

So I am currently still under evaluation whether to go for these medications. My next appointment falls next month. Till then i am off from Avonex, since 2009.

Keeping my fingers crossed to know my next step of medications to keep my MS in control.

Avonex Beta interferon not working after 9 years.

As informed earlier, I have been living with Multiple Sclerosis since 2009. It was only my initial 1-2 months i was on Methylprednisolone, Solumedrol on IV. After which I showed signs of weakness in limbs and difficulty in walking.

Soon i was put on Avonex beta interferon weekly injection since 2009. Gradually my walking distance reduced. This was followed by walking with support, holding some ones hand and reaching out to walls. My movement was restricted inside the house. Regular MRI’s were done for evaluating new lesions or enhancing lesions. All my lesions were inactive and new ones were not appearing in the brain.

My neurologist advised me to take a break from Avonex as my condition are stable clinically as there are no new findings in MRI. This was a biggest mistake that had to happen ever. I had serious problems on the third month of absenting Avonex, experienced vertical tremors while getting up, unable to walk without support, vision problems with more hand tremors.

I was immediately hospitalized and administered 5 day course of Methylprednisolone Solumedrol through IV. Followed by Omnacortil 10mg orally for 2 weeks after my discharge from hospital. Then again from 2014, after a gap of 3 months i am on Avonex weekly.

Now after 9 years on Avonex, my conditions are not any better as my walking, tremor has not been any better. Avonex just made more holes in my wallet. My neurologist has given me two options Natalizumab and Rituximab.

Please let me know fellow MSers if any of you are undergoing treatment with Natalizumab or Rituximab. Your experience will be of great help and support.