Lemtrada is a once a year infusion that may slow or possibly stop the progression of multiple sclerosis. It is a once a year infusion, but the first year you receive infusions for five days in a row. Subsequent infusions are once a year but occur for three days in a row.
Insurance companies paint it as being for relapsing-remitting multiple sclerosis, MS, after two ms drugs have failed. That is because there is some risk to the infusions.
It reminds me of the procedure used that stopped my MS in its tracks in the early 2000s. I was given big bags of steroids for three days in a row, which dampens the immune system, while also physically making your body stronger. On the third day the infusion included Cytoxan which modifies your immune system.
Because your body is revved on steroids, the immune system modification occurs quickly. This was done every three to six months, depending upon how I was reacting. It worked. My MS symptoms remitted, and have continued to improve until the present.
It is my guess that the Lemtrada may be working similarly. There was a lot of risk with the procedure I went through, and there is risk with Lemtrada. I believe it may be risky because both procedures basically turn your immune system off temporarily, followed by the immune system being less hyperactive about attacking your nervous system.
Both procedures use steroids heavily, which dampens the immune system. I had a severe infection after one set of infusions that landed me in the hospital for a week which I recovered from.
I continued to improve using once a week Tysabri self-injections, which I did for almost ten years; however, there is a danger to using Tysabri. The danger is that you may activate a latent JV virus which then causes multiple myelomas in your brain. They have a test that indicated I was getting close to JV virus activation, so I fortunately was able to switch to the new 800 pound gorilla in the fight against multiple sclerosis, Ocrevus.
The first time you take Ocrevus, it is infusions given two days in a row. The infusions last for six months. Subsequent infusions occur every six months and are for one day, with the infusion taking three or four hours.
My health has steadily improved since my late fifties. At 66, I am in better health than I was in my thirties. I developed MS in 1991 right before the first effective medications for multiple sclerosis were developed. Ocrevus is the best one by far. Tysabri helped a lot, but I noticed that I was more likely to get a cold or the flu on Tysabri. That has not been the case with Ocrevus. Ocrevus is for both primary progressive multiple sclerosis and relapsing remitting MS.
I recently had surgery on my eyes for double vision which I trace back to probably being caused by MS. Visual symptoms were the first thing I noticed in my late twenties which I think was a precursor to being diagnosed with primary progressive multiple sclerosis at age 36.
Right after the surgery, the double vision changed. Over the course of three weeks, it merged into unitary singular vision. They do not operate on the eyes themselves. They operate on the small muscles controlling those movements. They ” tighten the cables” leading to your eyes if you will. Anyway, you are put under anesthesia and released the same day so it is outpatient surgery.
I have excessive skin on my eyelids which I think contributed to the double vision (if you put pressure on the outside of your eye with a finger, it distorts your vision which is a similar effect). Surgery can remove the excessive skin safely, so I think I will do it. Anyway, for 2019, “the eyes (ayes) have it.”
For the next few days, Amazon is giving the book away free at https://www.amazon.com/dp/B07D7JBZ5L/ref=cm_sw_r_fa_awdo_t1_.pDiBbVDAK0S4
There is now compelling evidence that adverse circumstances can significantly shorten a child’s life. Adverse events such as child physical, sexual, and emotional abuse make the child as an adult more susceptible to chronic illness. I stated this in my book, “Multiple Sclerosis Mission Remission: Healing MS Against All Odds.” It is nice to see supporting information at
Vitamin D Mania!
Post 17: when getting your D is good
Neurologists are seeing the light regarding the importance of vitamins. I always took about 400 units of vitamin D. My neurologist recently recommended that I increase it to 20,000 units. They are getting research results implicating low levels of vitamin D with increased risk for multiple sclerosis. And beyond that, as noted in the chart above, low levels of vitamin D may play a role in many diseases.
See helpful healing to chronic disease described in my book “Multiple Sclerosis Mission Remission: Healing MS Against All Odds” available at amazon.com.
Multiple Sclerosis Mission Remission is also an audiobook at https://www.amazon.com/gp/aw/d/B07KFQD9DV/ref=tmm_aud_title_0?ie=UTF8&qid=&sr=
I was interview #606 on psychologist Dr. David Van Nuys’ http://www.Shrinkrapradio.com
A study involving MS patients with secondary progressive multiple sclerosis was conducted at the Oregon Health and Science University. People who took lipoic acid had less brain atrophy. There was less brain tissue loss with people who used lipoic acid compared to a control group. The results were promising enough that phase 2 studies are being conducted regarding the safety and efficacy of lipoic acid.
This study caught my eye because I use alpha lipoic acid because it is good for skin. I wonder if the alpha lipoic acid that I have been taking for years was one of the many factors that sent my primary progressive multiple sclerosis into remission. I also take DMAE for skin, but know of no studies regarding its effect on MS.
I think many healthy practices can combine to help MS patients. For example, it is recommended that people drink 8 glasses of water per day (this is especially true in Arizona where I live). You can see the many healthy practices I used at https://www.amazon.com/Multiple-Sclerosis-Mission-Remission-Healing-ebook/dp/B07D7JBZ5L/ref=mp_s_a_1_2?ie=UTF8&qid=1529367853&sr=8-2&pi=AC_SX236_SY340_FMwebp_QL65&keywords=multiple+sclerosis+Mission+remission