Columns What's Important Now -- An MS Column by Ian Franks MS Patients Need a Drug Therapy Without Awful Side Effects MS Patients Need a Drug Therapy Without Awful Side Effects by admin | June 24, 2016 Share this article: Share article via email Copy article link Never having been offered, let alone received any disease modifying therapy, I can address the subject of disease modifying therapies, and their side effects, with complete impartiality. Of course, the reason for the lack of any medication is because none has yet been approved for use with MS patients who have the primary progressive type. Let’s start by looking at the drug natalizumab and its relationship with progressive multifocal leukoencephalopathy (PM)L. Natalizumab, which goes by the brand name of Tysabri, has been the center of controversy and concern for years over whether patients on that therapy run the risk of developing PML. This is a life-threatening viral infection caused by the John Cunningham (JC) virus. The reason that natalizumab has never been offered to me is that it is used to treat highly active relapsing-remitting MS (RRMS) in patients. However, it has been associated with the development of PML. A previous news story on this site headlined “Guidelines Issued for Monitoring of MS Patients on Natalizumab Treatment” said: “Before the age of immunomodulating biological drugs, PML was associated with immunosuppression but not with autoimmune diseases such as MS. The JC virus is common and usually benign, and infects an estimated 60 percent of the European population. But the type causing PML is a mutated form that can enter into the brain, and researchers are puzzled as to why the virus mutates in MS patients on natalizumab.” A panel of neurologists from the U.K. and Ireland was put together by pharmaceutical manufacturer Biogen, but worked independently of the company. Members did not receive any payment for their work. MS patients have safety considered They analyzed available data from clinical trials and real-life use. Their findings were published in the article “Stratification and monitoring of natalizumab associated progressive multifocal leukoencephalopathy risk: recommendations from an expert group,” which appeared in the Journal of Neurology, Neurosurgery & Psychiatry. So, it seems that with disease modifying drugs, because all DMTs are drugs, patients everywhere need to be aware not only of side effects information provided with the medication but also with others that may occur without warning. I have been looking at the side effects of new MS drugs for some years now and have been generally disappointed by what has turned up. Things like unsteadiness and fatigue — as if we don’t have enough already — are bad enough, but then we get to the rare ones. I cannot tell you how many times “death” has been listed. But that’s ok as no one reads the patient information sheets, do they? Well, call me a nerd if you like but yes, I do. And, I have to say, that is one reason that no DMT has ever seemed attractive to my way of thinking. It must be time for scientists at the big pharma companies to develop some treatments that don’t carry the risk of such terrible side effects. The first one that does is sure to make his employer a great deal of money. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today and are intended to spark discussion about issues pertaining to Multiple Sclerosis. Print This Page Tags fatigue, MS patients, Natalizumab, PML, PPMS, side effects, Tysabri Comments Kym Totally agree! I was on Tysabri for 6 years. JCV - I chose to go off it. Now I'm going back on Gelenya. I went off it in March because I tested + JCV. I'm going to try it again. I was told I could take Gelenya for 2 years even if + for JCV. I don't want PML Reply Steve Tysabri should be considered by every one even if they test positive for JVC antibodies. A study was done where subjects who tested positive were given Tysabri infusions 6-10 weeks. They did not see anyone develop PML. I tested positive. I take it every 6 weeks at the recommendation of my neurologist who worked on the initial clinical trials. I have not had an excacerbation after using Tysabri for over 5 years. I did stop to try the 2 new pills but I had an excacerbation on both. I feel safe going every 6 weeks. Plus, there have been developments with treating PML if it occurs. Reply Kara Very scary drug I was about two hours away from getting put on it when the first pml happened.I decided not to go that route.It's really up to the individual weather they want to take that risk. Reply Fred Barrett My wife has been on Tysabri for 4 years. She is JCV positive. No significant progression of MS. We worry about PML but are not going to stop Tysabri until something better is available. Reply Aliya B. I've been on Tysabri since the beginning of 2010. Since this is my sixth year, I'm worried about the JCVirus. My doctor assured me that My chances of getting the JCVirus is one in 100 thousand. But, with my luck, I'd most likely be that one! Would it be possible, that since Tysabri has made my MS lesions smaller, that I could go on a lesser potent drug and be alright? I've been on Avonex and Rebif, before I started Tysabri. I relapsed three times in one year, until I went on Tysabri. I'm afraid to get off of it. Reply Kym Hi. Your Dr. Should be testing you for JCV every year! Insist on it. Maybe every 6 months. Stay on it as long as you can, I've gotten worse since I went off it. No, sorry, do what you believe is best for you. But, find out about JCV. I was - for years, then tested + last March. It can change. Kym Reply Jess just to ease your mind a bit....have you been tested for the JC virus? Because if you had, and are negative, then it is highly doubtful you are at risk of developing PML. In my research on this topic, I haven't come across a good explanation of how people contract the JC virus - just exposure to it & antibody development. The risk of Tysabri is the development of PML, not contracting JCV. You have to be exposed to it, it's not from the use of the drug. Your doctor should have tested you for it before prescribing Tysabri - if you've never been tested or JCV I would suggest you do that. Reply LYNNE HEAL This is yet another cover up as many fear the real truths about all the MS drugs coming out. NO MS drugs have ever cured MS and never ever will. Reply Lynne, thanks for commenting. While I agree that no drugs have cured MS, we can't say they never will. One day, someone, somewhere, might just amaze us. Reply Shona Yes Sasha been following https://overcomingms.org/ for 5+ years now. I refused Tysabri after I knew a lady who passed away from PML when taking it in the early days of Tysabri (2007). I saw this yesterday: http://www.watercure.com/. All about the physics of our bodies and how if we lack water and natural salts (no sodium) it can cause autoimmune disease. Reply Bebeth What is LDN ? I'm a newly diagnose RRMS i have 20 lessions in my brain but i have no Disease Modifying Drugs (DMD)yet . My liver function test is high that makes me worried of the side effects of the DMD. It will awaken my other sleeping medical conditions and become more sickly once i will be on the DMD w/c lowers my immune system . I read there is a MS vaccine on going trials , i'm having a second thought of DMD but instead changing my food intake , exercise , have more sunshine and praying for God's Divine Healing. Reply Your LDN question may be answered here: http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone Reply Terrie Keep praying. That is the main thing that brought me back from a severe attack after a root canal.God restored my vision. I have been on Avonex but my dr. Says Avonex will not do what I have seen. I thank God for his healing. Most people know Jesus paid for our sins on the cross but don't realize he was beaten for our sicknesses. Isaiah 53:5. So take your medicine but put your faith in God. Reply B.Kuluz That’s a great attitude! I pray for the day there is a cure. It can happen. There have been many improvements in Cancer treatment that were not thought possible years ago. There are people doing research for continuing to improve treatment for MS. I choose to believe there will be a cure on the horizon. Reply Rob Finally, someone has said what I've been thinking for years. Big pharma doesn't want to cure MS or any other disease. I tell people this, and I still get odd looks from time to time. Big pharma wants repeat customers, this should come as no surprise. It's the Mcdonald's model. McD's didn't build an empire selling 1 burger to people, they sell millions of burgers to repeat customers. Well, you don't get repeat customers by curing the disease. With all the money charged for MS medications, some over $70-80k annually, why would they ever want to end that gravy train? Reply Jess all 3 (so far) of my neurologists say they would never put me (JC+) on Tysabri because of the risk - I believe I just read an article stating the reason Tysabri is so effective, and therefore dangerous, is because it is such a potent drug. I can't even bring myself to take Tecfidera or Gilenya because of my PML anxiety and those risks are about 1/30,000. More to the title of your article though - my neurologist is currently doing research on a re-formulation of Gilenya, hoping to increase its safety & reduce harmful adverse effects. It's called Ozanimod if you hadn't already come across it in your own research. Hopefully, the safety profile can be improved. Reply Kym Ozanimod can also cause PML or so my Nuro. Dr. told me. If somebody knows something different, please let me know. Thanks. Kym Reply Jess You're correct - that is still a risk. He said they're looking at other safety concerns of the drug which would be beneficial for people not at risk for PML (if they want drug therapies). Reply Susan Addison I did well with Tysabri for approx. seven years (Secondary Progressive MS) with only a few relapses. My neuro said the longer you are on it, the greater your risks of PPML become. He took me off, and put me on Gilenya. I relapsed hard for the next year(hospitalized for a time and sent to inpatient rehab). Gilenya caused my lymphocytes to drop, and I had to reduce my dose by half (taken every other day). I thought the Gilenya was not working, but my neuro believed it was coming off the Tysabri that caused the severe relapse. Prior to this, I already had MS, Cushing's Disease, and pernicious anemia,three autoimmune diseases. I also had Type 2 Diabetes, which after taking medication for a while, I managed to correct with weight loss and diet. I also have Chronic Kidney Disease, Osteoporosis, and Hypertension. Since the drug change, I have developed two more autoimmune diseases, hypothyroidism and Primary Immune Deficiency know as CVID. This requires monthly IVIG infusions for the rest of my life. MS drugs are serious drugs. Who knows which of my comorbidities are due to side effects? Sometimes I wonder, which is worse-the curse or the cure? Never-the-less, my spirit is strong. Reply Laura Behrendt I need to find a new drug. I was on Gilenya and it allowed me to get squamous cell anal cancer. One of the side effect they don't tell you about unless you read the complete drug reactions. After I got it and read them sure enough it was there. Anyways I'm in remission and need to find a new drug. Tried Copaxone which is about the only drug out there that does not have a PML or cancer issue but it made me lose tons of weight. Sooo I need to toss a coin and see what I am going to take. Any suggestions are welcomed. I see my MS doc in two days and have no idea what I am going to tell him. Reply T. TARANTINO Hi fellow friends, I was diagnosed with RRMS in April 2016. I've been on multiple medications for the RRMS and had terrible side effects from everyone, that I needed to stop ASAP. I AM RELAPSING BADLY NOW WITH MY LEGS AND EYESIGHT BADLY! I cannot take any meds. With chemo. In it, it burns my body inside to outside till I bleed through my skin, and it's horrific PAIN. THEN I JUST WAS TAKING OFF ZINBRYTA AFTER 8 MONTHS BECAUSE I GOT SICK FROM THAT AS WELL. SIDE Effects are horrible, and I need to be on something else ASAP.. OR ILL BE WHEELCHAIR BOUND. DO EITHER OF THE TWO MEDS. HAVE CHEM. THERAPY IN IT?CAN SOMEONE GIVE ME ADVICE? I SEE MY NEUROLOGIST TODAY AT 2:30...Has anyone ever been on CELLCEPT? I was told by another MS patient that it works well. Help me someone please? Thank you and GOOD BLESSINGS TO ALL. I HOPE SOMEONE CAN GIVE SOME ADVICE BECAUSE I AM SCARED! Reply Terrie Keep praying. That is the main thing that brought me back from a severe attack after a root canal.God restored my vision. I have been on Avonex but my dr. Says Avonex will not do what I have seen. I thank God for his healing. Most people know Jesus paid for our sins on the cross but don't realize he was beaten for our sicknesses. Isaiah 53:5. So take your medicine but put your faith in God. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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