Lemtrada (Alemtuzumab) vs. Ocrevus (Ocrelizumab)

I was given a choice try either Lemtrada (Alemtuzumab) or wait and attempt to join the Ocrevus (Ocrelizumab) study. While waiting to get additional information on the study, I submitted Lemtrada to my insurance for approval. It was not easy to convince the insurance company to switch form Gilenya to Lemtrada, but eventually got the approval. I joined the Lemtrada Facebook group and read as much as I could about the drug.  It seemed like a big help to many, and not so much for others. As I grew frustrated waiting for the Ocrelizumab study to begin, I almost pulled the trigger on starting Lemtrada a few times, but thought that waiting for the breakthrough drug would be worth it. I am not saying that one therapy is better than the other, just documenting my journey in making the selection of what therapy I thought would be best for my condition. Here is the difference between the 2 drugs with Lemtrada having a higher risk profile and having availability since 2015, and Ocrevus still pending FDA approval.


***  I am not a doctor.  I am not an expert in MS or any other Neurological diseases.  Please note that any information that I post to this blog is from the internet.  Don't trust anything you read from the internet.  I am re-posting much of this information, and the opinions of this blog are just that, opinions.  This information is accurate to the best of my knowledge, but may be complete hooey.  I am not responsible for your health, and cannot be sure any of this information is accurate.  I am simply posting to try and help others who are in the same situation that I am in.  Be advised to consult with your neurologist if you have any questions about MS or your condition.

Lemtrada

How it is thought to work: Attacks cells thought to cause MS. It is a drug used in the treatment of chronic lymphocytic leukemia (CLL), cutaneous T-cell lymphoma (CTCL) and T-cell lymphoma under the trade names Campath, MabCampath and Campath-1H, and in the treatment of multiple sclerosis as Lemtrada. It is also used in some conditioning regimens for bone marrow transplantation, kidney transplantation and islet cell transplantation.
It is a monoclonal antibody that binds to CD52, a protein present on the surface of mature lymphocytes, but not on the stem cells from which these lymphocytes are derived. After treatment with alemtuzumab, these CD52-bearing lymphocytes are targeted for destruction.

• www.lemtrada.com
• http://www.nationalmssociety.org/Treating-MS/Medications/Lemtrada

Potential Side Effects: (Pulled from Lemtrada website) 

• Immune thrombocytopenia, which is when reduced platelet counts in your blood cause severe bleeding that, if not treated, may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
• Kidney problems called anti‑glomerular basement membrane disease, which can, if untreated, lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death. Call your healthcare provider right away if you have any of the following symptoms: blood in the urine (red or tea‑colored urine); swelling of legs or feet; coughing up blood

Infusion Reactions Including: 

• swelling in your mouth or throat
• trouble breathing
• weakness
• fast, slow, or irregular heartbeat
• chest pain
• rash

Increased risk of autoimmunity, infusion reactions, and certain kinds of cancer.

• Thyroid Problems
• Low Blood Counts (Cytopenias)
• Serious Infections
• Swelling of lung tissue

Common side effects

• rash
• headache
• thyroid problems
• fever
• swelling of your nose and throat
• nausea
• urinary tract infection
• feeling tired
• trouble sleepinG
• upper respiratory infection
• herpes viral infection
• hives
• itching
• fungal infection
• joint pain
• pain in your arms or legs
• back pain
• diarrhea
• sinus infection
• mouth pain or sore throat
• tingling sensationdizziness
• stomach pain
• sudden redness in face, neck, or chest
• vomiting

Infusion Schedule: 1st year, 5 days in a row.  2nd year, 3 days.

Post Infusion Blood work: Lemtrada requires monthly blood tests to monitor patients risks.

Ocrevus (Ocrelizumab)

How it is thought to work: is a humanized anti-CD20 monoclonal antibody, hence a CD20 antagonist. It targets mature B lymphocytes and hence is an immunosuppressive drug candidate. It is under development for multiple sclerosis by Hoffmann–La Roche's subsidiary Genentech, and Biogen Idec.

OCREVUS is an investigational, humanized monoclonal antibody designed to selectively target CD20-positive B cells, a specific type of immune cell thought to be a key contributor to myelin (nerve cell insulation and support) and axonal (nerve cell) damage. This nerve cell damage can lead to disability in people with MS. Based on preclinical studies, OCREVUS binds to CD20 cell surface proteins expressed on certain B cells, but not on stem cells or plasma cells, and therefore important functions of the immune system may be preserved.

• Breakthrough Therapy Designation
• Wikipedia:  Ocrelizumab

Targeted Action Date: December 28th, 2016

Current Availability: Only Neurologists who are providing it in a clinical trial, or EAP (Expanded Access Program)

Potential Side Effects: Mostly infusion related reactions and infections, mostly mild to moderate in severity.

Infusion Schedule (For this study):  600mg every six months, with Solumderol given prior to infusion.  Each infusion lasts 4-5 hours.

Drug Similarities:  Very close to Rituximab, which is given for Rheumatoid Arthritis.  

Why I chose Ocrevus (Ocrelizumab)

Although I was anxious to try anything different to stop the progression of MS in my body, I was slightly concerned about the potential serious side effects associated with Lemtrada. With a clinical study, all of my health care costs would be covered related to MS, and having participated in a clinical study before, I was leaning that way.  I feel that they pay more attention to your health needs, and do more when you're part of the study.  There was also the post-infusion blood tests that needed to be conducted monthly.  I would have to travel to a participating health center each month, which isn't convenient for me.  The infusion schedule is much more time consuming with Lemtrada too.  5 days in a row would mean that I'd have to take extra time off work, and then another 3 days the second year. With Ocrelizumab, the infusions are spread out over a full year, and I am not required to do the monthly blood tests.  There is limited information on the internet about Ocrelizumab, but with the FDA designating it breakthrough status, I wanted the best option for me with the lowest chance of serious side effects.  I also like to think that I am making a difference for others, by participating in the drug study.  There is no placebo with this study, so I know that I'l be getting the real deal.

Additional Information

My History with MS

Before I get my Ocrelizumab (Ocrevus) infusion in a few weeks, I thought that I would give a little history of my condition.  I realize that not everyone with MS has the same experience or symptoms, but maybe some of the things that I went through will be similar to others who are fighting MS.  From a health standpoint, I've always been pretty healthy.  I was athletic and did a lot of water and snow sports to keep active.  I had a lower back surgery in 2009 to deal with a protruding disc that was causing a ton of discomfort and sciatica.  I had a second surgery in the fall 2013 on the same area, as I was having more back problems.  Around the same time, I notices tingling in my toes and fingers.  Unfortunately, the back surgery did not alleviate any of the tingling in my extremities.  I was sent to my first Neurologist, and he suspected Multiple Sclerosis almost immediately.

He referred me to a specialist in MS after the tests and MRI came back confirming the diagnoses. In 2014, there was a number of different treatments for MS, but no cure.  I made the decision to participate in a clinical trial for the drug Gilenya.  I wasn't too excited about taking any drugs that forced me to take injections daily, and the possibility of taking a pill to slow down or halt the disease.  I was part of the clinical study for a year, and then switched over to my insurance footing the bill for the drug.  I continued to see progression of the disease, so in December of 2015, I talked to my Neurologist about other options.  I had seen some articles praising Ocrelizumab as a breakthrough medication that would be going tor FDA approval.  I wasn't willing to wait that long.  He told me about a potential study that would be available in 2016 using the drug.  I was also told about an alternative called Lemtrada, which worked in many of the same ways as Ocrelizumab, but had higher risks.  I told him that I was willing to wait to see if I could get in the study, versus having my insurance pay for Lemtrada.  Unfortunately, there were delays in getting the drug study for Ocrelizumab going, but we're very close now.

Here are my symptoms as I go into the study:

• Numbness in my toes, with it being far worse on the right side.
• Cannot bend my big toe on the right side without significant effort.  
• Knee pain on left leg, and stiff ligaments.
• Difficulty walking after sitting for a while.  Need to stretch for a few steps.
• Severe difficulty with stairs.  
• Balance is messed up.  Hug the walls when walking inside.
• Numbness and tingling in fingertips.  Dexterity has worsened.
• Cannot lift right leg without significant effort.  Impacts things like driving and getting in and out of a car.
• Cannot bend right foot forward.  Range of motion is limited.
• Walking is getting to be difficult.  Cannot walk extended periods without rest.
• Trouble sleeping
• Spasms in legs at night / Spasticity
• Cramping of legs

The good news is that my vision is still exceptional.  My latest test still showed 20/10 vision without glasses in both eyes.  I am still able to walk, but it is strenuous at times.  I don't really feel back pain, but with less padding between the bones in the spinal cord, I do have soreness at times.  I have been off of Gilenya for a few weeks now to ensure that I start with a clean slate in the study.  I have noticed some degradation in my abilities in the past few weeks, but it also has been incredibly hot outside which can affect people with MS.