This is scary. Im going on 7 years on Tysabri and I know that my levels are bound to reach high sometime. I just wanted to thank you for putting yourself out there, because there are many of us in the same boat that benefit from knowing there are others out there. Thanks.
Lauren, I'm going to be switching to it too. I'm really scared, just like you. I'm JCV positive, I'm allergic to Tecfidera, and to Copaxone, and even SoluMedrol. I just went off Rebif. My MS specialist saw me for the last time in July. She's only going to do research at USC Keck now. Brand new doctor, who I meet in mid November. So much to try to deal with and absorb. I'll hold your hand in spirit if you'll hold mine! Promise! My good news is that I have a mobility service dog now, Sadie. She's a three year old beautiful Australian shepherd. She even stayed in the backroom with the MRI tech for my MRIs last week. We can do this!
Lauren, you are the most resilient MS patient I have ever met. I'm sure it was scary for you to start Tysabri 9 years ago too, but I have no doubt you would say that was a great decision for you and your health. Don't ever let the uncertainty of this damn disease push you around! You are strong! Grab MS by the horns and don't let go! Keeping you in my thoughts and prayers. -Charlie
Hi Lauren. My wife has been on Copaxone, Rebif, Tecfidera (when it was "BG3"), Copaxone 40 mg, Tysabri (sero-converted to JCV+ after 8 months), Aubagio and now Gilenya. We understand how scary changing meds is, and wish you well. I hate this disease and what it does to its' victims. Watching your loved one go from active and healthy to helpless is so tough. Keep fighting! May you do well and keep posting. Your subscribers love to see your sweet self. *blessings
Lauren....You are so kind to share your knowledge and situation with others. It's been some time since you last posted, and I know we all hope you are doing well. I wish I had some direct or indirect medication experiences that could help you but I am on here to better understand the disease that unfortunately haunts some people I love. I will pray for you daily for God's help in making those difficult decisions. He has blessed you with a beautiful smile and a positive attitude...You are an inspiration to anyone who crosses your path....God, please continue to bless and protect Lauren....
Sending MASSIVE hugs to you babe. Ocrelizumab is looking incredible. Tbh, I think any "xxx-mab"s are the greatest treatment possible. The EMA are currently reviewing it for license in the UK and it's made me really hopeful and reassured that if I ever do have to come off Tysabri I have another option. I've had a recent scare with PML, the past few months have been very hard health wise and I have new symptoms. They wanted me to get through my steroid period and have it out of my system so I can have a "clean MRI", the priority was trying to get me stable. The most frightening new symptom I've been having is confusion and immediately they were worried I could have suddenly become positive and developed PML. Luckily, I had recently had a JCV test and they were able to contact the lab in Denmark where my bloods were sent and thankfully I am still JC negative. Massive weight off my shoulders. My MRI is on Tuesday, everyone is pretty sure there will be new activity and it's more of a matter of how much. I'm ok about it, I just want to know now. But it is pretty shitty when I've had no new activity since being on Tysabri :/ xxx
Lauren I've been following your videos for a while and I just wanted to let you know you have been such an inspiration to me and you have gotten me through some pretty dark days I just wanted to say thank you and I pray for you everyday you're going to be fine
Best of luck. I have been diagnosed with blood clots in my right lung and in my left leg. I know you are a WONDERFUL person who deserves the best in life! God Bless You Lauren!
Hi Lauren, good to see you are doing well. I am in a very similar situation to yours and I have been on Tysabri for about the same time frame. My doctor told me about Ocrelizumab and I will be trying it as soon as I am able to. Keep fighting the good fight and stay active like you are and I strongly believe we will beat this thing and soon..
Lauren; Best wishes for you and your new Neurologist. I can understand worries about having to start with a new Neurologist, though different reasons. I had a wonderful neuro for about 11 years, but I had to relocate to a different state. The first neuro I had was for about a year and a half. Short story he was not right for me. I've switch neuro’s and found a great individual that I fully trust and respect. It really does make a difference in one’s relationship with a neurologist. As for changes in medications, Being JCV positive, I never used Tysabri so I can’t say anything about switching from it. However, I was on Avonex for about eleven years, then Rebif about two and half years, then switch to Tecfidera, and it has been great. With Avonex and Rebif, I always had to deal with needle sores, and constant sick achy flu like feeling (but hey you got to do what you got to do to be positive and know that you are doing to fight the MS) For me switching to Tecfidera has been a good experience. I have not had any of its side effects. others have reported, knock on wood.
I am in the same boat as you and will be trying this new med also. I think things will go well for both of us. Stay strong Lauren, you are an inspiring person. Multiple sclerosis does not stand a chance!!
Lauren my sweet dear please have faith in yourself. I'm routing for your health and wellness through everything. You're always a joy to see. Please let me know how you are.
I am on the EXACT same boat. Waiting for Ocrelizumab approval in Canada though. Almost got it. I am not on treatment right now. I think it will be exciting to start it up. Keep your head up.
Hi lauren,i'm so glad to see you.every time you start crying, i must try not to cry too.(empathy) you are such a strong person and i think you make the right decision for yourself. i get tysabry since 9 years too and i didnt know what to do when i must get a new therapy too. i wish you the Best lauren.greetings from germany ☺
Lauren, I saw my MS specialist and I am not a candidate, because the Ocrelizumab requires simultaneous IV corticosteroids. I have relatively high JC virus titres as well. For the first time in four years, I'm off all MS modifiers. I'm scared because I don't what happens next. I relapse two to three times a year. On a brighter note, I'm seeing a rheumatologist and I could do a year's trial of Aubagio. I'm holding off until after the rheumatologist does testing for a possible second disease. I'm allergic to Tecfidera and Copaxone too, so I don't want to keep jumping from one MS drug to another for now. Hope you're getting lined up for Ocrelizumab yourself and that you do really well on it! Holding hands through all of this. 💛
Lauren always good to hear from you. I will be starting Ocelizumab myself in a few weeks. I have primary progressive ms and am concerned about starting it. I have been off all drugs for awhile but have used Tysabri in the past for several years. Had to stop because off JC virus it became to much of the risk of PML. It is always stressful to change medication for all of us you are strong and you can handle this. You will be in my thoughts and prayers. Please keep us updated.
Ocrelizumab won't be reviewed by the FDA until December. Just wanted to make sure that you are aware that it won't be available until after the approval comes through. www.nationalmssociety.org/About-the-Society/News/Ocrelizumab-Granted-Breakthrough-Therapy-Designat
Hi Lauren, glad to watch your video. I can see you are still grieving Dr Rossman. I think You are going through so many changes and glad to hear that. Neurologist is helping.Hopefully can try some relaxation techniques to guide you through.
Yoga, massage, Raiki, meditation anything to reduce your anxiety I have anxiety as well. It can be so stressful to handle regular grief on top of this disease. The MS society may be able to help. I have a great social worker here in the Northwest. I heard the MS society is not this great other places? Not sure that is true.
Dear Lauren, I was also really scared when I needed to switch from Tysabri to a new med. I did so well on Ty! Here in the Netherlands the preferred alternative for Ty is Fingolimod (Gylenya). I have been taking the pills since May. I am doing really well! This decision turned out to be the best for me. Sometimes I even think I am doing a little bit better than on Tysabri. Hope this helps you. Stay strong, Marjan from the Netherlands
I haven't watched your videos in a while but just randomly thought about you today. Sorry to hear about your doctor. You'll be in my prayers, stay strong. You look beautiful BTW.
Hi Lauren! I miss Dr Rossman terribly. I am in one of the final clinical trials for Ocrelizumab right now at MIND. I believe I am the only one in Michigan participating. I understand that Dr. Rossman was very excited about this medication. I was not on Tysabri, but I have had the initial infusion of Ocrelizumab and am now receiving vaccines. I am doing well. I believe this drug will be approved this year!
hi Lauren, glad your doing well. i switched from Avonex to Lemtrada aka Alemtuzumab which has had a great effect and best thing I've ever done! I feel the best i have since being diagnosed. xx
hi, i was having the most terrible side effects ever to the extent that i called my ms nurse and told them i will not take anymore avonex. i waited 6 months and they introduced Lemtrada and i said yes obv after doing my research and its been amazing. my second 3 day infusion starts early next year.
I can absolutely relate Lauren as I felt the same way when I was switched from Copaxone to Gilenya last year. 10 months into Gilenya, I had a relapse and my neurologist recommended I get into the Ocrelizumab trial...which I begin tomorrow. Switching meds is so scary, however Ocrelizumab results have been incredible thus far. This may end up being the best thing for us! Feel free to join the Ocrevus (Ocrelizumab) FB page in order to get feedback from others regarding this treatment: facebook.com/groups/653313891487070/ Best of luck and please keep us updated!
Lauren, I was on Tysabri for 2 plus years and JC positive. As you may be aware, the “rebound” effect, coming off Tysabri could be a big problem. It’s best to have a plan worked out with your dr. For me, I started Gilenya right after the last Tysabri infusion and then stayed on it. It takes a long time, up to 9 months, to be completely clear of the possible “rebound” effects coming off Tysabri. You may be going into uncharted territory switching directly to Ocrelizumab directly, so my suggestion is to consult with dr…of course. I too plan on switching to Ocrelizumab very soon, going from Gilenya and hopefully that is ok. Best of luck!
hug lauren i panicked when the insurance switched me from every copaxone to 3 times a week with my neurologist approval. i hope everything will be okay with your switch.
hi Lauren I have been taking Ocrelizumab for 3 years. I was able to take part in the trial and now I am still in the extension study of the med. I only have good things to say about this medicine. I switched from Copaxone to the trial and it has worked wonderfully for me. when I started taking the medication I had some side effects right after infusion but my body is used to it now and I get much less now side effects now. I have not had a major relapse in 3 years, the last 2 years I have had no new lesions. I say go for it!
I am currently on my 5th medication . I have had MS since I was 18 years old. I have had new lesions on every single MRI I have gotten since then and I am 24 now. Right now I am currently on Aubagio but if my next MRI in 3 months has more lesions I will be switching over to Lemtrada which terrifies me. I really hope that at my appointment when I talk to him about Ocrelizumab that it will be something that I can try and do well on!!! I hope that everything goes good with your switch. it would be a dream if I could be on one medication that long and have it work for me so I hope to some day find that!!
I was told not to take tysabri because I'm JC positive. they advised against it. Of course everybody is different. I'm going to tell you right now I know you're scared to switch medications but from everything I've read about ocrelizumab , there couldn't be a better time to have to switch medications. I've been on gilenya for coming up on two years now. I'm very concerned about my liver levels and the fact that it keeps my white blood cell count very low. On average my white blood cell count is 3.7 and has been as low as 1.7. Normal is 5.0 - 8.0. needless to say I get infections very easy and have put me in the hospital a couple times. I am like you I'm scared to leave gilenia because although I have been sick I have no evidence of progression of a mess. No new lesions. When I heard the news about ocrelizumab I thought it was too good to be true. And still scares me and I still think it's too good to be true however I am counting the days for its release. I'm trying to find information on patients who have compromised immune systems and the drug itself. From everything that I've read it leaves your immune system intact and only targets certain cells. This disease has paralyzed me from the chest down with the complete injury and has left me visually impaired. I also do not have use of my arms I am effectively a quadriplegic because of this disease. So I can empathize with the fear of switching drugs.
I can imagine how you feel. My levels are high too and so my neurologist put me to every six weeks I want to stay on tysabri for as long as possible. I'm hoping that helps. I know you did that as well. I hope someone is on ocrelizamab and can tell you how they are doing! Keep us all posted!
I hope this last month is going well with the new drug. I am going in for an mri at the end of the month for my every six month pml check. I always get nervous before that.
I'm being switched from Avonex to Tysabri right now and I'm just as frightened as you are by switching medications PML terrifies me and I'm beyond scared :( so I do understand what your going through with the switch of medications
Hi Lauren! I have been seeing your posts for a while but I had no idea we had so much in common with regard to MS. I have also been taking tysabri for almost 9 years and have a very high titre. In 2014 I went of off ty to try to tecfidera for 6 months. I gave it a fair shot but, Big mistake! I had a ton of new lesions and was the most sick I have ever been. But as you know, we never know what to expect with this dang disease! So I have been told I should also change to ocrelizumab. I am terrified!! I really love tysabri. A year ago I had one pml scare just had a spinal tap to rule it out. (I chalk that up to the stress of divorce). Knowing that ocrelizumab is also a MAB helps a bit, but we seem to be in the same scary boat! Wish we had a crystal ball in here :)
Hi, I am new here. I was diagnosed with MS in 2007 (I have had symptoms since I was 16) and I take Gylenia (may not be spelled right) I was also in the study to get that pill approved, and taking a pill was much less stressful than a shot, I hate needles. I hope everyone here has a great day.
HI Lauren, I am also JC positive. My Dr took me off of Tecfidera (which I loved!) He wanted me to go back to Copaxone but I couldn't do it. I was just done with the lumps, bumps, needles. Right now I am not on any DMD's. I have an appointment with my neuro on 10/11. I will probably go back on something, but what? I also have A-fib which limits me taking many meds. Hang in there, Lauren.
Was on Tysabri and switched to tecfidera two years ago. Do not have to go to hospital for the infusion. Tecfidera is delivered to my home. So far, no cost.
Hi Laura, I was also a patient of Dr Rossmans and miss him dearly. This is a scary road to travel without him. Like you I had been on Tysabre for around 9 years and took a break from it to be in a repair therapy clinical study and when it was over my insurance would not let me go back to it because of my high risk for PML. I was taking Ampyra but have been taken off of it because my white blood cell count dropped dangerously. I have a two month wait until I can start something new. Since it has been a while since your original post I assume you have or are soon to start Ocrilizamab. How has it been.
Hi Lauren! It's so nice to see your smiling face! I am currently taking RITUXAN (Rituximab) instead of targeting T cells, Rituxan targets specific immune cells called B cells. ( the ones they think attack the myelin ) I recieve an infusion every 6months. I'm on my 4th infusion and next week I'm due for my 4th infusion. I can't wait because my body is due...I can feel that I need it. ( have you ever felt like that just before your next dose? ) I'm also JC positive and one risk is PML. I love this medication! This is my fourth type of MS med, I will read up on OCRELIZUMAB..thanx Lauren..God Bless You!!
Tysabri lasted 34 months for me then i became septic shock and still tried it 1x more and same thing so i had to go off n didnt do a medication vacation and jumped onto gilenya and it caused suicidality and my grades went from honor roll to failing to retain information within 1 month. Many of us had this occur enough that we were able to advocate for more disclosure about new protocols i.e. the jcv testing at a minimum. This was all about 7 years back. Know its totally normal to become immune to an immune modifying medication, thats the point of the approach right? High jack the process of inflammatory disease impact on your CNS. Im not JC virus positive still but due to a BBB during my botched LP im at risk w every viral infection so i can sympathize with the frustration and heartache of your worries and complicated grief that happens everytime something fails. This is manageable and w your support network to build a care plan for your mental health in those circumstances what to look for and what you need in whatever period of time as needed. Im sorry for your loss of such an important partner in making these choices. Know its reasonable to get a second opinion when switching meds and you do this by partnering with your local MS society to help you find a physician whod be willing to look at your data over time and what your concerns and ambitions are with your future planning lifestyle wise. These are specific specialists whom can virtually or in person meet w you and go over options and expectations. Im on tecfidera which has been very isolating due to gut microbiome and left over damage from the gilenya mental health impacts thatve been lasting. My immune system is thus severely compromised. That being said w a baby aspirin and fiber supplementation ive had less obnoxious adverse reaction. The trade off? My lesions over 20 of them went dormant and shrank within 3 months! I also stopped having frequency of a Chemo Fog impact and around 6 months i had the ability to access memories from childhood on through including radical details as though a videocamera! So thats something to consider. Best of luck i hope that helps.
I started Rebif injection, and was offered to switch to pills (since they just came out) but said no thanks, rebif worked really well for me. I wish, I could give you a comforting hug. But Hope my virtual hug is enough. *Hug*
I know exactly how you feel about switching medications.I was on Tysabri for 2 years but had to switch due to having the JC virus and high tider levels.I went almost completely being in both my eyes when I switched due to a massive flare up that tysabri can cause when you come off of it.with permanent vision loss.I am now on Gilenya and have not had any flare ups or relapses for almost 2 years.
I've had to switch my M.S. therapy several times since being diagnosed , 4 times to be exact . In order ; Avonex, Tysabri, Gilenya and finally Tecfidera my current drug therapy. My diagnoses came late in my M.S. journey so it's been difficult to treat , after 20 years hardly any major relapses. Only after 30 years have I become disabled by it so I'd say I'm doing awesome Lauren . I hope your new meds are helpful for you and we'll tolerated ❤.
AJ Kaven Hi AJ , no problem 😁. I'm 46 now and I was clinically diagnosed at 39 . My Own suspicion of Multiple Sclerosis goes back to when I was 19 when I first presented intense pain in my right palm w/ swelling . This symptom stayed with me for years , doctors were unable to come to any conclusion. At 25 I started to have an exaggerated shock reflex (easily startled) and shaking vision upon waking . If you'd like to know more , just let me know . Tracy ❤️
Lauren Parrott Lauren my one major relapse was 6 years ago when I presented with optic Neuritis in my left eye . Though my relapses have been mild , my disease progression has continued unabated over the last 6 years . I received an MRI two weeks ago an I'm stable now thanks to Tecfidera oral therapy.
Hi Lauren, I am trying to find out more about JC virus titer or “indeterminate”. The JC test shows how much antibody, not if you “have” the virus? This seems very outlandish to me. Hope you can shed some light on this subject. I was diagnosed 6 years ago with CIS(MS)and did not have good reactions to the four DMDs I was prescribed. I Might try Gilenya even though I am told that I am JC positive. If I understand what that means. Just tonight I had a discussion on Facebook about MS with someone who used the term indeterminate for JC virus. (Making an appointment tomorrow with my neurologist to ask about my JC “positive” result. Hope you are doing good.
Hi Lauren, I am confused a few videos ago you said no one that has extended their infusion schedule has gotten PML. You were doing fine extending your Tysabri infusions and it works great for you so why change now. Doctors know people with weakened immune systems that are JCV positive have an increased risk for PML but they don't know why some people get PML and others don't. They also don't know much about the JCV virus. There are also two types of the virus and they think it somehow mutates into a neurotrophic virus and infects the brain but they don't know how that happens. I think until they know for sure how people get PML you should be cautious about switching or at least get another Dr's opinion. If you don't feel good about your decision to switich get more information. Take care and stay positive
Thank you Lauren. I was diagnosed Primary Progressive in late August and have not yet begun to take anything. Pardon me if I don't know the correct abbreviations/lingo yet but....I believe my doctor has already spoken of Ocrelizumab however I have hepatitis antibodies in the blood and according to her, I MAY be worse off taking it. There is a new drug coming on the market, Biotin I believe it is, which she says MAY work for me but she has more research to do.
Hi, Lauren -- I'm about to start a clinical trial with Ocrelizumab because the "traditional" MS DMTs aren't working for me - I've relapsed with every one I've been on. Have you started on the Ocrelizumab? I hope you're doing alright with it. It's so scary going to another med!
Lauren I have gone on the website for Ocrelizumab and it says that there is a risk for PML with it as well. If that is why you are whiching then isn't that kind of pointless.
Hi Lauren, I am curious about your higher Titer level, did it go higher while having your 6 weekly Tysabri infusions or was it high before you started to stretch out your time? and your levels didn't decrease?
I had to stop Tysabri for the same reasons as you; JCV+ and really high titer level. I switched to a combination of Aubagio and Lemtrada, start my second round of Lemtrada tomorrow. It's been a rough year, my MS is pretty aggressive so I may not be the best person to ask about "my switching from Tysabri experience" but I can say this; I don't have PML so.... haha.... Also waiting on Ocrelizumab approval to add that to my current list of treatments alongside Lemtrada/aubagio.
Hi Matt, Yours is the first that I have heard of with 2 or more DMTs being given concurrently. It is fascinating. I imagine that Aubagio lowers the immune system also, and that, at a time when Lemtrada has lowered it quite significantly... how exactly did you deal with such a double whammy, and how do you protect yourself from simple risk factors like others having a cold or sore throat around you? My neurologist is recommending Ocrelizumab for me when it becomes available. I was scared of Lemtrada but now am leaning towards that, pending further research.
It's actually more common than you would think and even still we are talking about Ocrelizumab on top of it all and yeah, people have done it with Rituxin which is very similar. Crazy what the body can handle!
Just tired really. A LITTLE nauseous but NOTHING compared to last time so all and all it's not so bad (knock on wood haha) but yeah, I watched her videos before my first round as well!
Hi Lauren. FYI. I just emailed my Neuro and this was her response to me after I asked her about possibly switching from RITUXAN to OCRELIZUMAB . **OCRELIZUMAB is exactly the same and works the same as rituxan. It's just new so no cases of PML yet reported but the same risks exist with this medication as with rituxan. It is also not yet on our formulary. Please check back with me re: this medication in December. I don't believe it would work any better than rituxan. They both do the same thing in the immune system which is to suppress the B cell count.
I'm sorry your crying..I would if I lost my Doctor..I love her!! About RITUXN, I am doing very well with it. I was slowly progressing but RITUXAN has halted my MS. In 3 years I went from wall walking, to cane, to a rollator..I trust my Neuro and I pray ( seriously ) that you find peace in your switch.
I just had my infusion today..took about 51/2hrs. When I was leaving the infusion clinic, the RN kept telling me " slow down" I quess I was pushing my rollator super fast! LOL so, I do feel much better afterwards and I have not had any major relapses (a day or two) since I have been on RITUXAN. This time I was very sleepy during and after my infusion. NOW, it's 10:30pm and I'm wide awake!! Thanx steroids..oh well.. lauren I'm so blessed to know you and share this struggle with you...we are strong because of it we overcome through the strength of the LORD! Stay blessed!
I'm doing well. Squeaky the rat & Peanut Butter the mouse are doing fine as well! I know you lost Dr Rossman! Peanut Butter is still sending you a nuzzle. That little fellow! He had what cancer? Could this get any worse?
Thank you for your video. I started on Ocrelizumab 3 months ago, and have been blogging my progress since I switched form Gilenya. ocrelizumab.blogspot.com Good luck with your switch and I'd be happy to answer any questions you may have. Go Badgers!
This is scary. Im going on 7 years on Tysabri and I know that my levels are bound to reach high sometime. I just wanted to thank you for putting yourself out there, because there are many of us in the same boat that benefit from knowing there are others out there.
Thanks.
Lauren, I'm going to be switching to it too. I'm really scared, just like you. I'm JCV positive, I'm allergic to Tecfidera, and to Copaxone, and even SoluMedrol. I just went off Rebif. My MS specialist saw me for the last time in July. She's only going to do research at USC Keck now. Brand new doctor, who I meet in mid November. So much to try to deal with and absorb. I'll hold your hand in spirit if you'll hold mine! Promise! My good news is that I have a mobility service dog now, Sadie. She's a three year old beautiful Australian shepherd. She even stayed in the backroom with the MRI tech for my MRIs last week. We can do this!
Lauren, you are the most resilient MS patient I have ever met. I'm sure it was scary for you to start Tysabri 9 years ago too, but I have no doubt you would say that was a great decision for you and your health. Don't ever let the uncertainty of this damn disease push you around! You are strong! Grab MS by the horns and don't let go! Keeping you in my thoughts and prayers. -Charlie
Hi Lauren. My wife has been on Copaxone, Rebif, Tecfidera (when it was "BG3"), Copaxone 40 mg, Tysabri (sero-converted to JCV+ after 8 months), Aubagio and now Gilenya. We understand how scary changing meds is, and wish you well. I hate this disease and what it does to its' victims. Watching your loved one go from active and healthy to helpless is so tough. Keep fighting! May you do well and keep posting. Your subscribers love to see your sweet self. *blessings
Lauren....You are so kind to share your knowledge and situation with others. It's been some time since you last posted, and I know we all hope you are doing well. I wish I had some direct or indirect medication experiences that could help you but I am on here to better understand the disease that unfortunately haunts some people I love. I will pray for you daily for God's help in making those difficult decisions. He has blessed you with a beautiful smile and a positive attitude...You are an inspiration to anyone who crosses your path....God, please continue to bless and protect Lauren....
Sending MASSIVE hugs to you babe. Ocrelizumab is looking incredible. Tbh, I think any "xxx-mab"s are the greatest treatment possible. The EMA are currently reviewing it for license in the UK and it's made me really hopeful and reassured that if I ever do have to come off Tysabri I have another option.
I've had a recent scare with PML, the past few months have been very hard health wise and I have new symptoms. They wanted me to get through my steroid period and have it out of my system so I can have a "clean MRI", the priority was trying to get me stable. The most frightening new symptom I've been having is confusion and immediately they were worried I could have suddenly become positive and developed PML. Luckily, I had recently had a JCV test and they were able to contact the lab in Denmark where my bloods were sent and thankfully I am still JC negative. Massive weight off my shoulders. My MRI is on Tuesday, everyone is pretty sure there will be new activity and it's more of a matter of how much. I'm ok about it, I just want to know now. But it is pretty shitty when I've had no new activity since being on Tysabri :/ xxx
Lauren I've been following your videos for a while and I just wanted to let you know you have been such an inspiration to me and you have gotten me through some pretty dark days I just wanted to say thank you and I pray for you everyday you're going to be fine
Best of luck. I have been diagnosed with blood clots in my right lung and in my left leg. I know you are a WONDERFUL person who deserves the best in life! God Bless You Lauren!
Hi Lauren, good to see you are doing well. I am in a very similar situation to yours and I have been on Tysabri for about the same time frame. My doctor told me about Ocrelizumab and I will be trying it as soon as I am able to. Keep fighting the good fight and stay active like you are and I strongly believe we will beat this thing and soon..
Lauren;
Best wishes for you and your new Neurologist. I can understand worries about having to start with a new Neurologist, though different reasons. I had a wonderful neuro for about 11 years, but I had to relocate to a different state. The first neuro I had was for about a year and a half. Short story he was not right for me. I've switch neuro’s and found a great individual that I fully trust and respect. It really does make a difference in one’s relationship with a neurologist.
As for changes in medications, Being JCV positive, I never used Tysabri so I can’t say anything about switching from it. However, I was on Avonex for about eleven years, then Rebif about two and half years, then switch to Tecfidera, and it has been great. With Avonex and Rebif, I always had to deal with needle sores, and constant sick achy flu like feeling (but hey you got to do what you got to do to be positive and know that you are doing to fight the MS) For me switching to Tecfidera has been a good experience. I have not had any of its side effects. others have reported, knock on wood.
I am in the same boat as you and will be trying this new med also. I think things will go well for both of us. Stay strong Lauren, you are an inspiring person. Multiple sclerosis does not stand a chance!!
Lauren my sweet dear please have faith in yourself. I'm routing for your health and wellness through everything. You're always a joy to see. Please let me know how you are.
I am on the EXACT same boat. Waiting for Ocrelizumab approval in Canada though. Almost got it. I am not on treatment right now. I think it will be exciting to start it up. Keep your head up.
Hi lauren,i'm so glad to see you.every time you start crying, i must try not to cry too.(empathy) you are such a strong person and i think you make the right decision for yourself. i get tysabry since 9 years too and i didnt know what to do when i must get a new therapy too. i wish you the Best lauren.greetings from germany ☺
Thanks for that video! I too am JVC positive and will definitely talk to my neurologist about this new drug you mentioned. I wish you well!
Lauren, I saw my MS specialist and I am not a candidate, because the Ocrelizumab requires simultaneous IV corticosteroids. I have relatively high JC virus titres as well. For the first time in four years, I'm off all MS modifiers. I'm scared because I don't what happens next. I relapse two to three times a year. On a brighter note, I'm seeing a rheumatologist and I could do a year's trial of Aubagio. I'm holding off until after the rheumatologist does testing for a possible second disease. I'm allergic to Tecfidera and Copaxone too, so I don't want to keep jumping from one MS drug to another for now. Hope you're getting lined up for Ocrelizumab yourself and that you do really well on it! Holding hands through all of this. 💛
Lauren always good to hear from you. I will be starting Ocelizumab myself in a few weeks. I have primary progressive ms and am
concerned about starting it. I have been off all drugs for awhile but have used Tysabri in the past for several years. Had to stop because off JC virus it became to much of the risk of PML. It is always stressful to change medication for all of us you are strong and you can handle this. You will be in my thoughts and prayers. Please keep us updated.
Ocrelizumab won't be reviewed by the FDA until December. Just wanted to make sure that you are aware that it won't be available until after the approval comes through. www.nationalmssociety.org/About-the-Society/News/Ocrelizumab-Granted-Breakthrough-Therapy-Designat
Hi Lauren. Wish you good luck. Stay positive Send you lot of Love
Hi Lauren, glad to watch your video. I can see you are still grieving Dr Rossman. I think You are going through so many changes and glad to hear that. Neurologist is helping.Hopefully can try some relaxation techniques to guide you through.
Yoga, massage, Raiki, meditation anything to reduce your anxiety I have anxiety as well. It can be so stressful to handle regular grief on top of this disease. The MS society may be able to help. I have a great social worker here in the Northwest. I heard the MS society is not this great other places? Not sure that is true.
Dear Lauren, I was also really scared when I needed to switch from Tysabri to a new med. I did so well on Ty! Here in the Netherlands the preferred alternative for Ty is Fingolimod (Gylenya). I have been taking the pills since May. I am doing really well! This decision turned out to be the best for me. Sometimes I even think I am doing a little bit better than on Tysabri. Hope this helps you. Stay strong, Marjan from the Netherlands
I haven't watched your videos in a while but just randomly thought about you today. Sorry to hear about your doctor. You'll be in my prayers, stay strong. You look beautiful BTW.
Lauren Parrott I am thank you
Hi Lauren! I miss Dr Rossman terribly. I am in one of the final clinical trials for Ocrelizumab right now at MIND. I believe I am the only one in Michigan participating. I understand that Dr. Rossman was very excited about this medication. I was not on Tysabri, but I have had the initial infusion of Ocrelizumab and am now receiving vaccines. I am doing well. I believe this drug will be approved this year!
I actually meant that it may be approved within the next year! MS Brain!
hi Lauren, glad your doing well. i switched from Avonex to Lemtrada aka Alemtuzumab which has had a great effect and best thing I've ever done! I feel the best i have since being diagnosed. xx
Thanks Lauren! x
Simon, what made you change from Avonex to Lemtrada?
hi, i was having the most terrible side effects ever to the extent that i called my ms nurse and told them i will not take anymore avonex. i waited 6 months and they introduced Lemtrada and i said yes obv after doing my research and its been amazing. my second 3 day infusion starts early next year.
Good luck Lauren.
Blessings to you my friend from the LBC...
I can absolutely relate Lauren as I felt the same way when I was switched from Copaxone to Gilenya last year. 10 months into Gilenya, I had a relapse and my neurologist recommended I get into the Ocrelizumab trial...which I begin tomorrow.
Switching meds is so scary, however Ocrelizumab results have been incredible thus far. This may end up being the best thing for us! Feel free to join the Ocrevus (Ocrelizumab) FB page in order to get feedback from others regarding this treatment:
facebook.com/groups/653313891487070/
Best of luck and please keep us updated!
Good to see you...
hi, I know you will be just. You do well with new meds pray leave up to GOD he there for you nor will he forsake you,blessings to you.
Lauren, I was on Tysabri for 2 plus years and JC positive. As you may be aware, the “rebound” effect, coming off Tysabri could be a big problem. It’s best to have a plan worked out with your dr. For me, I started Gilenya right after the last Tysabri infusion and then stayed on it. It takes a long time, up to 9 months, to be completely clear of the possible “rebound” effects coming off Tysabri. You may be going into uncharted territory switching directly to Ocrelizumab directly, so my suggestion is to consult with dr…of course. I too plan on switching to Ocrelizumab very soon, going from Gilenya and hopefully that is ok. Best of luck!
Praying that you will find peace in whatever decision you make regarding your healthcare. God bless you.
i wih the bet for you good bless you..they want me to start tysabri but I'm so afraid to start i have kid's im nervous of all side effects
hug lauren i panicked when the insurance switched me from every copaxone to 3 times a week with my neurologist approval. i hope everything will be okay with your switch.
hi Lauren
I have been taking Ocrelizumab for 3 years. I was able to take part in the trial and now I am still in the extension study of the med. I only have good things to say about this medicine. I switched from Copaxone to the trial and it has worked wonderfully for me. when I started taking the medication I had some side effects right after infusion but my body is used to it now and I get much less now side effects now. I have not had a major relapse in 3 years, the last 2 years I have had no new lesions. I say go for it!
I am currently on my 5th medication . I have had MS since I was 18 years old. I have had new lesions on every single MRI I have gotten since then and I am 24 now. Right now I am currently on Aubagio but if my next MRI in 3 months has more lesions I will be switching over to Lemtrada which terrifies me. I really hope that at my appointment when I talk to him about Ocrelizumab that it will be something that I can try and do well on!!! I hope that everything goes good with your switch. it would be a dream if I could be on one medication that long and have it work for me so I hope to some day find that!!
I was told not to take tysabri because I'm JC positive. they advised against it. Of course everybody is different. I'm going to tell you right now I know you're scared to switch medications but from everything I've read about ocrelizumab , there couldn't be a better time to have to switch medications. I've been on gilenya for coming up on two years now. I'm very concerned about my liver levels and the fact that it keeps my white blood cell count very low. On average my white blood cell count is 3.7 and has been as low as 1.7. Normal is 5.0 - 8.0. needless to say I get infections very easy and have put me in the hospital a couple times. I am like you I'm scared to leave gilenia because although I have been sick I have no evidence of progression of a mess. No new lesions. When I heard the news about ocrelizumab I thought it was too good to be true. And still scares me and I still think it's too good to be true however I am counting the days for its release. I'm trying to find information on patients who have compromised immune systems and the drug itself. From everything that I've read it leaves your immune system intact and only targets certain cells. This disease has paralyzed me from the chest down with the complete injury and has left me visually impaired. I also do not have use of my arms I am effectively a quadriplegic because of this disease. So I can empathize with the fear of switching drugs.
I can imagine how you feel. My levels are high too and so my neurologist put me to every six weeks I want to stay on tysabri for as long as possible. I'm hoping that helps. I know you did that as well.
I hope someone is on ocrelizamab and can tell you how they are doing! Keep us all posted!
I hope this last month is going well with the new drug.
I am going in for an mri at the end of the month for my every six month pml check. I always get nervous before that.
I'm being switched from Avonex to Tysabri right now and I'm just as frightened as you are by switching medications PML terrifies me and I'm beyond scared :( so I do understand what your going through with the switch of medications
Hi Lauren! I have been seeing your posts for a while but I had no idea we had so much in common with regard to MS. I have also been taking tysabri for almost 9 years and have a very high titre. In 2014 I went of off ty to try to tecfidera for 6 months. I gave it a fair shot but, Big mistake! I had a ton of new lesions and was the most sick I have ever been. But as you know, we never know what to expect with this dang disease! So I have been told I should also change to ocrelizumab. I am terrified!! I really love tysabri. A year ago I had one pml scare just had a spinal tap to rule it out. (I chalk that up to the stress of divorce). Knowing that ocrelizumab is also a MAB helps a bit, but we seem to be in the same scary boat! Wish we had a crystal ball in here :)
Hi, I am new here. I was diagnosed with MS in 2007 (I have had symptoms since I was 16) and I take Gylenia (may not be spelled right) I was also in the study to get that pill approved, and taking a pill was much less stressful than a shot, I hate needles. I hope everyone here has a great day.
it is, thank you. and I hope you can get on a medication you are comfortable with.
HI Lauren, I am also JC positive. My Dr took me off of Tecfidera (which I loved!) He wanted me to go back to Copaxone but I couldn't do it. I was just done with the lumps, bumps, needles. Right now I am not on any DMD's. I have an appointment with my neuro on 10/11. I will probably go back on something, but what? I also have A-fib which limits me taking many meds. Hang in there, Lauren.
Was on Tysabri and switched to tecfidera two years ago. Do not have to go to hospital for the infusion. Tecfidera is delivered to my home. So far, no cost.
Hi Laura, I was also a patient of Dr Rossmans and miss him dearly. This is a scary road to travel without him. Like you I had been on Tysabre for around 9 years and took a break from it to be in a repair therapy clinical study and when it was over my insurance would not let me go back to it because of my high risk for PML. I was taking Ampyra but have been taken off of it because my white blood cell count dropped dangerously. I have a two month wait until I can start something new. Since it has been a while since your original post I assume you have or are soon to start Ocrilizamab. How has it been.
Hi Lauren! It's so nice to see your smiling face! I am currently taking RITUXAN (Rituximab) instead of targeting T cells, Rituxan targets specific immune cells called B cells. ( the ones they think attack the myelin ) I recieve an infusion every 6months. I'm on my 4th infusion and next week I'm due for my 4th infusion. I can't wait because my body is due...I can feel that I need it. ( have you ever felt like that just before your next dose? ) I'm also JC positive and one risk is PML. I love this medication! This is my fourth type of MS med, I will read up on OCRELIZUMAB..thanx Lauren..God Bless You!!
Hi Lauren. Great to answer anything.. I will go on your discussion, K? =o)~
Tysabri lasted 34 months for me then i became septic shock and still tried it 1x more and same thing so i had to go off n didnt do a medication vacation and jumped onto gilenya and it caused suicidality and my grades went from honor roll to failing to retain information within 1 month. Many of us had this occur enough that we were able to advocate for more disclosure about new protocols i.e. the jcv testing at a minimum. This was all about 7 years back. Know its totally normal to become immune to an immune modifying medication, thats the point of the approach right? High jack the process of inflammatory disease impact on your CNS. Im not JC virus positive still but due to a BBB during my botched LP im at risk w every viral infection so i can sympathize with the frustration and heartache of your worries and complicated grief that happens everytime something fails. This is manageable and w your support network to build a care plan for your mental health in those circumstances what to look for and what you need in whatever period of time as needed. Im sorry for your loss of such an important partner in making these choices. Know its reasonable to get a second opinion when switching meds and you do this by partnering with your local MS society to help you find a physician whod be willing to look at your data over time and what your concerns and ambitions are with your future planning lifestyle wise. These are specific specialists whom can virtually or in person meet w you and go over options and expectations. Im on tecfidera which has been very isolating due to gut microbiome and left over damage from the gilenya mental health impacts thatve been lasting. My immune system is thus severely compromised. That being said w a baby aspirin and fiber supplementation ive had less obnoxious adverse reaction. The trade off? My lesions over 20 of them went dormant and shrank within 3 months! I also stopped having frequency of a Chemo Fog impact and around 6 months i had the ability to access memories from childhood on through including radical details as though a videocamera! So thats something to consider. Best of luck i hope that helps.
I started Rebif injection, and was offered to switch to pills (since they just came out) but said no thanks, rebif worked really well for me. I wish, I could give you a comforting hug. But Hope my virtual hug is enough. *Hug*
Lauren Parrott I have switched from Tysabri to Alemtuzumab. So far so good 🙏 I also have RRMS with 7-8 relapses/year with Avonex 😢
Thank you for this video- I will check it out (medicine) for my wife who has secondary progressive. Best Wishes- God Bless
I know exactly how you feel about switching medications.I was on Tysabri for 2 years but had to switch due to having the JC virus and high tider levels.I went almost completely being in both my eyes when I switched due to a massive flare up that tysabri can cause when you come off of it.with permanent vision loss.I am now on Gilenya and have not had any flare ups or relapses for almost 2 years.
I've had to switch my M.S. therapy several times since being diagnosed , 4 times to be exact . In order ; Avonex, Tysabri, Gilenya and finally Tecfidera my current drug therapy. My diagnoses came late in my M.S. journey so it's been difficult to treat , after 20 years hardly any major relapses. Only after 30 years have I become disabled by it so I'd say I'm doing awesome Lauren . I hope your new meds are helpful for you and we'll tolerated ❤.
Lauren Parrott I've found it the only way to be , it has helped me stay healthy ❤️
Tracy, can I ask how old you were when you first got diagnosed? what were your symptoms during those 20 years?
AJ Kaven Hi AJ , no problem 😁. I'm 46 now and I was clinically diagnosed at 39 . My Own suspicion of Multiple Sclerosis goes back to when I was 19 when I first presented intense pain in my right palm w/ swelling . This symptom stayed with me for years , doctors were unable to come to any conclusion. At 25 I started to have an exaggerated shock reflex (easily startled) and shaking vision upon waking . If you'd like to know more , just let me know . Tracy ❤️
Lauren Parrott Lauren my one major relapse was 6 years ago when I presented with optic Neuritis in my left eye . Though my relapses have been mild , my disease progression has continued unabated over the last 6 years . I received an MRI two weeks ago an I'm stable now thanks to Tecfidera oral therapy.
Tracy Lustick thanks Tracy. Do you think Tecfidera is helping?
Hi Lauren, I am trying to find out more about JC virus titer or “indeterminate”. The JC test shows how much antibody, not if you “have” the virus? This seems very outlandish to me. Hope you can shed some light on this subject. I was diagnosed 6 years ago with CIS(MS)and did not have good reactions to the four DMDs I was prescribed. I Might try Gilenya even though I am told that I am JC positive. If I understand what that means. Just tonight I had a discussion on Facebook about MS with someone who used the term indeterminate for JC virus. (Making an appointment tomorrow with my neurologist to ask about my JC “positive” result. Hope you are doing good.
Hi Lauren,
I am confused a few videos ago you said no one that has extended their infusion schedule has gotten PML. You were doing fine extending your Tysabri infusions and it works great for you so why change now. Doctors know people with weakened immune systems that are JCV positive have an increased risk for PML but they don't know why some people get PML and others don't. They also don't know much about the JCV virus. There are also two types of the virus and they think it somehow mutates into a neurotrophic virus and infects the brain but they don't know how that happens. I think until they know for sure how people get PML you should be cautious about switching or at least get another Dr's opinion. If you don't feel good about your decision to switich get more information.
Take care and stay positive
Thank you Lauren. I was diagnosed Primary Progressive in late August and have not yet begun to take anything. Pardon me if I don't know the correct abbreviations/lingo yet but....I believe my doctor has already spoken of Ocrelizumab however I have hepatitis antibodies in the blood and according to her, I MAY be worse off taking it. There is a new drug coming on the market, Biotin I believe it is, which she says MAY work for me but she has more research to do.
Hi Lauren. Just leaving a comment on all your videos. Lol. Have you tried CBD oil? Its helps me soooo much with my anxiety and depression.
Hey Lauren my name is Shellie started Zinbryta this last April so far after the first injection haven't had any side effects
You r doing what he suggested Lauren .... he recommended it before he passed
Hi, Lauren -- I'm about to start a clinical trial with Ocrelizumab because the "traditional" MS DMTs aren't working for me - I've relapsed with every one I've been on. Have you started on the Ocrelizumab? I hope you're doing alright with it. It's so scary going to another med!
I had the first half of my first Ocrelizumab infusion last week - so far, so good! Have you started on the Ocrelizumab yet?
Lauren I have gone on the website for Ocrelizumab and it says that there is a risk for PML with it as well. If that is why you are whiching then isn't that kind of pointless.
Hi Lauren, I am curious about your higher Titer level, did it go higher while having your 6 weekly Tysabri infusions or was it high before you started to stretch out your time? and your levels didn't decrease?
Lauren have you started ocrelizumab yet?! How's it going so far if you have?!
I had to stop Tysabri for the same reasons as you; JCV+ and really high titer level. I switched to a combination of Aubagio and Lemtrada, start my second round of Lemtrada tomorrow. It's been a rough year, my MS is pretty aggressive so I may not be the best person to ask about "my switching from Tysabri experience" but I can say this; I don't have PML so.... haha.... Also waiting on Ocrelizumab approval to add that to my current list of treatments alongside Lemtrada/aubagio.
Hi Matt,
Yours is the first that I have heard of with 2 or more DMTs being given concurrently. It is fascinating. I imagine that Aubagio lowers the immune system also, and that, at a time when Lemtrada has lowered it quite significantly... how exactly did you deal with such a double whammy, and how do you protect yourself from simple risk factors like others having a cold or sore throat around you? My neurologist is recommending Ocrelizumab for me when it becomes available. I was scared of Lemtrada but now am leaning towards that, pending further research.
Matt, I hope you are having your treatment and tolerating it well, with improved and lasting good outcomes.
It's actually more common than you would think and even still we are talking about Ocrelizumab on top of it all and yeah, people have done it with Rituxin which is very similar. Crazy what the body can handle!
That is something! Good to know. Kind regards.
Just tired really. A LITTLE nauseous but NOTHING compared to last time so all and all it's not so bad (knock on wood haha) but yeah, I watched her videos before my first round as well!
Hi Lauren. FYI. I just emailed my Neuro and this was her response to me after I asked her about possibly switching from RITUXAN to OCRELIZUMAB . **OCRELIZUMAB is exactly the same and works the same as rituxan. It's just new so no cases of PML yet reported but the same risks exist with this medication as with rituxan.
It is also not yet on our formulary. Please check back with me re: this medication in December.
I don't believe it would work any better than rituxan. They both do the same thing in the immune system which is to suppress the B cell count.
I'm sorry your crying..I would if I lost my Doctor..I love her!!
About RITUXN, I am doing very well with it. I was slowly progressing but RITUXAN has halted my MS. In 3 years I went from wall walking, to cane, to a rollator..I trust my Neuro and I pray ( seriously ) that you find peace in your switch.
I just had my infusion today..took about 51/2hrs. When I was leaving the infusion clinic, the RN kept telling me " slow down" I quess I was pushing my rollator super fast! LOL so, I do feel much better afterwards and I have not had any major relapses (a day or two) since I have been on RITUXAN. This time I was very sleepy during and after my infusion. NOW, it's 10:30pm and I'm wide awake!!
Thanx steroids..oh well.. lauren I'm so blessed to know you and share this struggle with you...we are strong because of it we overcome through the strength of the LORD! Stay blessed!
Have you seen the video by Dr Josh Axe? "How to over come MS" A lot of info.
Don't bother Lauren, another snake oil salesman. Not a real doctor, either
Certified clinical nutritionist, Doctor of Natural Medicine and has worked with Olympic athletes. duh
I have been on Ocrelizumab in a clinical trial for almost three years.
Doing good .
is it working ? ( Ocrelizumab ) do you feel better ?
It has been working for me,i have been doing good on it!!!
Any side effects ?
Can we chat on facebook ?
Their is a group on Facebook for Ocrelizumab,called Ocrevus ( Ocrelizumab )
I'm doing well. Squeaky the rat & Peanut Butter the mouse are doing fine as well! I know you lost Dr Rossman! Peanut Butter is still sending you a nuzzle. That little fellow! He had what cancer? Could this get any worse?
Thank you for your video. I started on Ocrelizumab 3 months ago, and have been blogging my progress since I switched form Gilenya. ocrelizumab.blogspot.com Good luck with your switch and I'd be happy to answer any questions you may have. Go Badgers!