Surprisingly Bone Marrow Transplantation is happening in India for MS - Should we take a chance?

As part of visiting hospitals for regular checkups and talk with Neurologist for my MS, i actively read the internet for any hope on Multiple Sclerosis.

One of the press release of Fortis hospital has caught my eye for performing Bone Marrow Transplantation (BMT) and they claim to have done more than 100 cases. It really good to hear this positive advancement to control Multiple Sclerosis and give MS patients a good life.

Fortis hospital doctors say that clinical processes only helps in the slow progression of diesease and not stop the myelin attack. 

According to Dr Rahul Bhargava said, “The reason for multiple sclerosis remains an enigma. The clinical processes only help slow the progression of the disease and do not offer a sure shot cure. In an autologous BMT procedure, the healthy stem cells from the patient are taken out and preserved. Chemotherapy is then administered to reset the body’s immunity and then the stem cells are injected back to rescue the person from the side effects of chemotherapy.  After the surgery, the patient is kept under isolation for a few months to ensure they do not contract any infection.”

I am have moved from Primary to Secondary Progressive Multiple Scelorosis, i am not sure if Bone Marrow Transplantation will be of any help.

Please leave your comment. Great if any one can provide confidence to go for Bone marrow transplantation (BMT) in India.

Is it safe to have Natalizumab (Tysabri) or Ocrelizumab (Ocrevus) while you are tested JC Virus positive?

I had to under go the JC virus antibody test for CSF and Serum and found that i am JC virus positive. While my neurologist are evaluating my risk for undergoing the next level of treatment with Natalizumab (Tysabri) or Ocrelizumab (Ocrevus), i wanted to understand from other MS patients who are on these treatments.

I have heard a lot and seen video testimonials of patients going through Tysabri infusions and saying that they feel better. Also few of them are JC virus positive who are at risk of getting the PML (Progressive multifocal leukoencephalopathy) a rare disorder and fatal disease that affects the brain.

My understanding of breaking this medical acronym of PML is:

Progressive - Self understanding as Progressive

Multifocal - Lesions at multiple places in brain

Leuko - White matter of the brain

Encephalopathy - Disorder

When we visit these companies official websites the main page pops up with patient risk assessment. The information clearly mentions that MS patients who are undergoing treatment on Tysabri must be closely monitored for PML disease very often.

Let us understand how do we evaluate a patient before prescribing Tysabri:

1) He or she must undergo for JC Virus test (More information on this below). Few test to confirm are: JC Virus antibody, JC virus serum, IgG index values.

2) If you are JC virus positive, then the chances of getting PML disease is 1:1000 patients (Not sure from where this data is captured or mentioned in company website. Are they updating this regularly)

3) If you are JC virus negative, then the chances of getting PML disease is 1:10000 patients (But you cannot be happy that you are tested negative, you can get this virus anytime). So again you need to get tested every 6 months.

4) You cannot take Tysabri for life long like interferons (e.g Avonex). The company Biogen says it can be taken for 2 years safely, then every 6 months you must test JC virus activity in your body. Depending on the pros and cons the neurologist will decide whether to continue Tysabri or move on to some other disease modifying therapies.

More information about JC Virus:

JC Virus is present in most of the human population (approximately 90%). While this virus is harmless among people having good immunity (Majority of the population, except few MS patients) it is harmful among people having suppressed immunity. 

MS patients immunity is compromised since we have to undergo disease modifying therapies such as interferons and immuno suppressants. While you are on these therapies (Further adding Tysabri) your immunity is less and those people who are JC Virus positive tend to get PML since JC virus is main cause of it. JC Virus enters the blood brain barrier and affects the white matter.

It will be interesting to know from others real time experience and their confidence on taking Tysabri who are currently tested positive for JC Virus.

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.