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.
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.
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 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.
Additional Information
*** 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.
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.
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
Hi Mike,
ReplyDeleteMy name is also Mike. I too am in the same situation you were in last July. I was diagnosed with RRMS 5 years ago, and now after my initial 6 months on Copaxone then 56 infusions of Tysabri my index is elevated to the point where my neurologist is recommending I jump ship to the two options listed in your blog. I have a good friend that is currently on Lemtrada and seems to be in remission. I too have concerns over the array of possible side effects with both treatments and would love to hear how Ocrevus is treating you?
Here is my email if you want to respond
mhhowie@yahoo.com
Thanks for your time
Hi Mike,
ReplyDeleteI like the poster above is in a similar boat; given the choice of lemtrada vs ocrevus. So far from what I have read and understand, I have to agree with everything you said above and am leaning towards Ocrewvus. Since you are now on Ocrevus, how are you doing with it? Do you think you made the right decision vs Lemtrada? Thank you for your informative posts.