What EDSS?

Someone asked me yesterday what my EDSS score meant.  My score since being diagnosed 2 years ago has gone from 2.0 to 4.0.  Very hopeful that Ocrelizumab will stop that progression.

Expanded Disability Status Scale (EDSS)

Score	Description
1.0	No disability, minimal signs in one FS
1.5	No disability, minimal signs in more than one FS
2.0	Minimal disability in one FS
2.5	Mild disability in one FS or minimal disability in two FS
3.0	Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5	Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0	Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5	Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0	Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5	Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0	Requires a walking aid - cane, crutch, etc - to walk about 100m with or without resting
6.5	Requires two walking aids - pair of canes, crutches, etc - to walk about 20m without resting
7.0	Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5	Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but can not carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0	Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5	Essentially restricted to bed much of day. Has some effective use of arms retains some self care functions
9.0	Confined to bed. Can still communicate and eat
9.5	Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0	Death due to MS

Post Infusion Improvement

I wanted to post an update with my improvements the day after my infusion.  I am assuming that this is only due to the steroid infusion I had yesterday.  Although I have used Prednisone in the past, this is the first time I've had it administered interveniously.  The biggest issue I had was not being able to sleep last night.  I didn't have trouble falling asleep, but was up numerous times throughout the night for extended periods.  Although my heart rate was normal, I was cogniscent of my beating heart while I was laying there.  When I got up today, I did see some big improvements in my walking and balance, and noticed that I didn't have the knee pain or soreness in my arms that I normally have. I also did not have any cramping or ligament stiffness today.  I don't think that this has anything to do with Ocrelizumab, but the steroids.  I wanted to post this so that people would know what to expect post-infusion.  I don't know how long this reduction in MS symptoms will last, but I'm happy to be having a great MS day.

A Study of Ocrelizumab: Phase III - CHORDS MN30085

I thought that I would post additional information about the study that I am participating in.  All of this material is on the clinicaltrials.gov website, and is subject to change at any time.

Sponser:  Genentech            clinicaltrials.gov Identifier:  NCT02637856

As of this blog post, this study is still looking for participants.

Purpose:  This study will evaluate the efficacy and safety of ocrelizumab in participants with RRMS who have had a suboptimal response to an adequate course of DMT. Participants will receive ocrelizumab as an initial dose of two 300-milligram (mg) intravenous (IV) infusions (600 mg total) separated by 14 days followed by one 600-mg IV infusion every 24 weeks for the study duration. Anticipated time on study treatment is 96 weeks.

Study Type: Interventional
Study Design: Allocation: Non-Randomized
Endpoint Classification: Safety/Efficacy Study
Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Treatment
Official Title: AN OPEN-LABEL STUDY TO EVALUATE THE EFFECTIVENESS AND SAFETY OF OCRELIZUMAB IN PATIENTS WITH RELAPSING REMITTING MULTIPLE SCLEROSIS WHO HAVE HAD A SUBOPTIMAL RESPONSE TO AN ADEQUATE COURSE OF DISEASE MODIFYING TREATMENT

Primary Outcome Measures:

• Percentage of Participants Without Any Protocol-Defined Events (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) During 96-Week Period [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]

Secondary Outcome Measures:

• Percentage of Participants Without Any Protocol-Defined Events (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) During 24-Week Period and 48-Week Period [ Time Frame: Baseline to Weeks 24 and 48 ] [ Designated as safety issue: No ]
• Time to Protocol-Defined Event (Relapse, T1 Lesion, New and/or Enlarging T2 Lesion, Confirmed Disability Progression) [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Percentage of Participants Per Year with Protocol-Defined Relapse [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First Protocol-Defined Relapse [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First T1 Gadolinium (Gd)-Enhanced Lesion as Detected by Brain Magnetic Resonance Imaging (MRI) [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of First New and/or Enlarging T2 Lesion as Detected by Brain MRI [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Time to Onset of Confirmed Disability Progression for at Least 24 Weeks According to Expanded Disability Status Scale (EDSS) Score [ Time Frame: Baseline to Week 96 ] [ Designated as safety issue: No ]
• Total Number of T1 Gd-Enhancing Lesions as Detected by Brain MRI [ Time Frame: Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]
• Change From Baseline in Total T2 Lesion Volume Detected by Brain MRI [ Time Frame: Baseline to Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]
• Total Number of New and/or Enlarging T2 Lesions Detected by Brain MRI [ Time Frame: Weeks 24, 48, and 96 ] [ Designated as safety issue: No ]

Estimated Enrollment: 600
Study Start Date: February 2016
Estimated Study Completion Date: December 2019
Estimated Primary Completion Date: December 2019 (Final data collection date for primary outcome measure)

Eligibility

Ages Eligible for Study:   18 Years to 55 Years   (Adult)

Genders Eligible for Study:   Both

Accepts Healthy Volunteers:   No

Criteria

Inclusion Criteria:

• Diagnosis of multiple sclerosis (specifically RRMS), in accordance with the revised 2010 McDonald criteria
• Disease duration from first symptom of less than or equal to (</=) 10 years
• Treated with or received no more than two prior DMT regimens of greater than or equal to (>/=) 6 months, and the discontinuation of the most recent DMT was due to lack of efficacy
• Suboptimal disease control while the participant was on his/her last DMT for >/=6 months (defined by having one of the following despite being on a stable dose of the same DMT for >/=6 months: one or more clinically reported relapses, one or more T1 Gd-enhanced lesions, or two or more new or enlarging T2 lesions on MRI); in participants receiving stable doses of the same approved DMT for more than a year, the event must have occurred within the last 12 months of treatment with this DMT

Exclusion Criteria:

• History of primary progressive multiple sclerosis (PPMS), progressive relapsing multiple sclerosis (PRMS), or secondary progressive multiple sclerosis (SPMS)
• Contraindications for MRI
• Known presence of other neurological disorders that may mimic multiple sclerosis
• Pregnancy or lactation
• Requirement for chronic treatment with systemic corticosteroids or immunosuppressants during the course of the study
• History of or currently active primary or secondary immunodeficiency
• Lack of peripheral venous access
• History of severe allergic or anaphylactic reactions to humanized or murine monoclonal antibodies
• Active infection, or history of or known presence of recurrent or chronic infection such as hepatitis B or C, human immunodeficiency virus (HIV), syphilis, or tuberculosis
• History of progressive multifocal leukoencephalopathy
• Contraindications to or intolerance of oral or IV corticosteroids

Additional information can be found on the clinicaltrials.gove website for study NCT02637856

***All information on this page is from https://clinicaltrials.gov/ct2/show/NCT02637856

My First Ocrelizumab Infusion!

Today is the day!  I started out by having a conversation with the Neurologist and physical exam.  This office currently has 7 people on this drug, but everyone else is part of the original OPERA trials.  I am patient number 1 on the CHORDS study for this office, which is from a company called Genentech with a Protocol number of MN30035.  They have 3 others that are queued up behind me.  My doctor told me that this drug should deplete my B Cells, but has an added effect of stimulating stem cell regeneration.  Those stem cells are thought to then have the positive effect of reducing the lesions that cause MS.  He said that if my condition doesn't get any worse, then this is a success.  If it gets better, then it is a grand slam.  I've waited over 7 months to get this drug, and my optimism is high.  Here is the purpose of the study:

This study will evaluate the efficacy and safety of ocrelizumab in participants with RRMS who have had a suboptimal response to an adequate course of DMT. Participants will receive ocrelizumab as an initial dose of two 300-milligram (mg) intravenous (IV) infusions (600 mg total) separated by 14 days followed by one 600-mg IV infusion every 24 weeks for the study duration. Anticipated time on study treatment is 96 weeks.

Initial Vitals:

• Weight 252.6  
• Initial Blood pressure 124/79
• My EDSS score today is 4.0.

Started out taking 50mg Benadryl and 500mg Tylenol, followed by a 100mg Solu-Medrol (Methylprenisolone) steroid infusion.  I did not  initially get sleepy from the Benedryl, and didn't really notice anything with the steroid drip either.  In the last 30 minutes of the Ocrelizumab infusion, I did doze off for a few minutes and did have some minor spasms in my left leg.

The Ocrelizumab on the first visit is administered over a period of 2.5 hours, for a total of 300mg.
It is sensitive to light, so the drug is covered.  They change the flow rate of the drug 5 times, with the volume increasing with each level until the 300mg is gone.

Volume	Minutes	Rate
16ml	30	32ml/hr
32.5ml	29	65ml/hr
48.5ml	29	97ml/hr
64.5ml	29	129ml/hr
97ml	29	194ml/hr

My body temperature was normal all day, and didn't spike at all.  My blood pressure did drop for the first few readings, but then came up.

• 122/73
• 119/77
• 113/75
• 100/69
• 123/73
• 135/74
• 140/76
• 134/72
• 123/74
• 113/73

I did have them check to see my EDSS scores from the previous Gileyna trial I was on.  In July of 2014, it was 2.0.  In July of 2015, it was 2.5.  So, a 4.0 shows that I am deteriorating.  I'm anxious to see if this number remains stable, or gets better!

During the infusion process, if you have to go to the bathroom, they have you bring the infusion trolley with you.  I brought lunch, and tons of things to do, but spend most of my time online on my iPad writing this post.  After the infusion is complete, they have you sit around for an hour to ensure there are no problems.  I did not have any side effects from the infusion.  My body temp stayed stable, and I didn't get any rashes.  I was able to drive myself home without incident.  I go back in 2 weeks for the 2nd 300mg.  

Reduction in lesions?

I have read through enough articles about Ocrelizumab to get excited just due to the possibility of reducing the number of brain lesions. In the phase II study, 220 people with relapsing remitting multiple sclerosis had reductions in the total number of brain lesions detected by MRI scans with 96 percent of people who had the 2,000mg dosage and 89 percent who had the 600mg dosage, compared to placebo. Additionally, the annualized relapse rate was reduced by 80 percent compared to placebo for those on the 600mg dosage.  (73% for the 2,000mg)

Just the idea of being able to reduce the number of lesions, or stopping new ones from forming is exciting. I realize that this is still a long journey for me, and I may not see results, if any, for a while.  I tell people that I'm cautiously optimistic, and that I feel lucky that I get to participate in this study.  On the MS SubReddit, I had questions on how I was able to get involved with Ocrelizumab.  Honestly, I was proactive and asked my Neurologist, and said that I really wanted this drug. We went down the path of getting approved for Lemtrada as an alternative while waiting for this opportunity, but I'm glad that I was accepted to the study. I am patient number one for this specific research facility, and I know that there are 2 more queued right behind me. Less than a week away until I get started.

Final Tasks: MRI, Blood Test, and Pee in Cup...

Getting into the death tube now seems like routine.  I think that this is the 4th MRI I've done in the past 2 years.  I'm not claustrophobic and I enjoy being able to just relax and think when I'm in the MRI machine.  The substance they inject made my hand feel heavy and left a metallic taste in my mouth, but that's pretty much the extent of the downside of an MRI.  I did my final blood and urine test today as well.  Only one week left until my first infusion.  I'm getting excited about the possibility of getting some of my life back.  I do have copies of a couple of my older MRI's.  Since this is part of a drug study, I probably won't personally get to have copies of the MRI from today, so here is a sequence from 2014 when I was diagnosed:

2014 MJM MRI from Michael Mikkelson on Vimeo.

Tracking Levels and Symptoms

My symptoms have progressed enough in the last six months that it's hard to pinpoint when different things started happening. I decided that throughout this trial of Ocrelizumab, I would track the symptoms in a spreadsheet to see if there is any improvement or decline over time. I'll use a google spreadsheet that will be open to anyone, and eventually create charts to graph the progress. There is a quick link on the side of this page, but you can click here to view the baseline spreadsheet.

I'm hoping to see these numbers decline after I get the treatment, but understand that there are no guarantees. Yesterday was a particularly difficult day, MS wise, so it's a good starting point. I realize that there is a definite potential that things could get worse, and at least I'll be able to see the trends for my most common symptoms.

A drug has no name. Wait, it's Ocrevus.

Looks like Ocrelizumab actually does have a name for the retail market.  Ocrevus.  It's interesting that the drug names are all made up words, probably in an attempt to ensure that the domain name still exists. All other dictionary names have been taken, so they need to make stuff up.  It's nice the Ocrevus is at least easier to pronounce than Ocrelizumab.

Update:  Initial blood tests came back with good results, so I'm still a go for the infusion on the 28th.  My Cholesterol is low, which has always been true.  My triglycerides are high.  Everything else looks great.  A week from today is the final blood tests, and 2 weeks from tomorrow is the infusion. Today is sort of a relapse from a relapse.  It is the first "Good" MS day I've had in a while.  My symptoms seem to always be present, so having a day where they are less noticeable is very welcome.

FDA grants priority review for Genentech's Ocrevus (Ocrelizumab) Biologics License Application.

Mobility, Canes, and Falling on my face

I've been hesitant to use a cane, but find myself hugging the walls and struggling with long distances. I tripped and fell at work last week, the first time that has happened at work. I was trying to hurry to a meeting, and my shoe tripped over the carpet when I didn't pick my foot up far enough. I fell hard. I have the rug burn on my elbow, and sprained knee to prove it. I had difficulty getting up. No one saw me, but it was still embarrassing. A week later and my leg still hurts. Having sprained my knee again, I was reminded that I heal much slower these days. I went to a Milwaukee Brewers game yesterday and used my cane to help traverse the distance to the stadium from the parking lot. I tried not to pay attention to the people, but walking down the steps to my seat was slow, and I'm painfully aware that people are impatient behind me. I now keep 2 canes in my car, just in case.

My MS symptoms have degraded very quickly in the past 6 months, and I've now accepted that I need to have some type of mobility assistance when walking long distances. I'm really getting nervous that my condition has deteriorated enough that even trying something like Ocrelizumab will not help. But, I'm am cautiously optimistic that it will be a life-saver for me. I'm back at work today, and really struggling with the fatigue and walking. But, I brought donuts for the staff, as it's tradition to do so for your Birthday. I turned 45 yesterday, and hope to see science create more breakthroughs for MS in the coming years. My first infusion is a few weeks off still.  I'm really looking forward to seeing what it does to me.  :)

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.

It has begun...

I am officially signed up to start using Ocrelizumab (Ocrevus) as part of a clinical trial.  This blog will act as my diary to track how I'm responding to the drug.  I have additional blood work and MRI to complete before getting my first infusion, so I still have a few weeks of waiting.  I hope that by documenting my progress, it will help others who are also looking to the internet on Ocrelizumab resources.