MRI found new active lesion yesterday. Doctor wants me to switch to Ocrevus or kesimpta. In reading the brochures, all i can focus on is increased risk for pml and cancer. I took Tecfidera 1st, then because my WBC went so low switched to Copaxone. Been on that 8 yrs. so now it seems like either i become disabled, or die from a deadly disease. Can anyone please help me to feel better about this?
Seems like kesimpta would be easier because you do it yourself at home and I’m used to giving myself injections. But the brochure for that looks worse (at 1st reading). And i guess I’ll probably be ‘assisted’ with my choice by insurance
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Neworleanslady
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Hi Neworleanslady I'm really sorry about your new lesion. 🤗 I started on copaxone then had to switch to Ocruvus. I have to go every 6months for an infusion. It's a pain but the are starting to make them faster! Alot of people should pitch in on it... 🤣
I'm not going to lie, I got a new lesion on it. But as they say nothing is fool proof.. even me!😂🤗💕🌠
what are the actual numbers on pml deaths, the real numbers the total numbers? As I remember and I may be wrong being diagnosed with ms was 1-1000. Of that how many people are diagnosed with pml?
I don’t know exactly. She said yesterday that there were 9 total pml deaths on Ocrevus, 8 had just switched from another immunocompromising dmt like tysabri and 1 was an elderly man with unknown premorbid conditions
I think that possibly BEFORE you get scared you may want to find out these things. Your fears are your but allow yourself to be educated with the facts, before you make your decision and the best wishes for you in your decision
I have asked the doctor some more questions and I plan to look up information online about the medications. But I also want to do some research on this forum to get real life experiences.
I was on Tecfidera and switched to Ocrevus and it’s the best thing for me. I have had no issues since being on it. I have had some improvements since being on it
I actually like the fact I don’t have to take a pill everyday and I just do the infusion 2x’s a year. I just sit back or rather sleep through the infusion. There is nothing to be nervous or afraid of .
When I was in the hospital the dr made the decision to put me on Ocrevus because Tecfidera stopped working and thats why I ended up in the hospital because I couldn’t walk
If u decide to do Ocrevus the have support that you can get from a patient navigator who helps set up infusion dates locations. If u need financial help they have that as well. They also answer whatever questions you may have.
You can call them now to have them answer any questions you may have now
Good evening- I have been on Rituxan (precursor and equal to Ocrevus) for 4 yrs. I was infused today! My MS Mulva Clinic has lab work done at regular intervals to monitor for any changes. I do my research like you - but I have tremendous trust in my steller doctor. I'm 73 - diagnosed at 69 - surprise, right? No family history, no symptoms before. Yes, there is a risk for PML but is really quite small. Talk more to your doctor about your concerns - each case of MS is different. I wish you best. I was sorry to see your Mardi Gras was cancelled but I love the decorated houses. Maybe next year....
I was on Copaxone then switched to Ocrevus. Been on it for 4 years. It is a game changer Twice a year infusion. The two days a year are the days I look forward to to just relax and read! . No new lesions.
sorry about some of the bad news for you but i really like the infusions of Ocrevus ...it has mad my life a lot better and the best part no more shots..they really caused lots of damage to the muscles...good luck on what you decide and talking to the doctor and stand your ground when it comes to insurance ..your doctor can help fight them for the best choice for you...take care and be safe ...enjoy life ...
Thank you! Im feeling a little better about Ocrevus. (But i still love the encouragement 😀). A lot of times when im lying there at night or first thing in the morning i feel more worried and vulnerable. Hopefully that will start to subside too
Sorry for the bad news. I failed Copaxone also. Can you ask for a drug that has never caused PML? I believe the interferons are. Lemtrada is still a good one, but I think you have to fail two drugs to get it. When someone does develop PML, it’s easier to deal with when therapy can be paused...so Kesimpta being every 4 weeks is a little safer in that regard, than Ocrveus. You didn’t mention what you JC level was? What in the brochure was worse?
I am jc positive. It just looked worse to me in the kesimpta brochure because it had pml as big headings throughout the pamphlet versus only mentioned a couple of times in the Ocrevus one. I realize that may sound psycho. Is pml treatable? My first ms doctor, who has long since been fired, and his nurses told me pml is a death sentence.
Ohhh, ok. I was surprised to read it also, but then I looked it up and it wasn’t Kesimpta, it was the same drug at a high dose given IV for CLL. Many of the Ocrevus cases are from people switching from Tysabri or like Rituxan, the people were also on chemo. Not the same, but also doesn’t negate concerns about getting PML. It is treatable, but needs to be recognized early!
sorry that the MRI did not bring the news you wanted. I would ask your neuro to get put on the strongest DMT available that your body can take. Get the inflammation tamed, then your body can start to stabilize.
Ocrevus did the job for me.
I also like that it's once every six months (almost 9 or 12 for me). They are also trying to make them faster down to 2 hours for people who tolerate it. I must admit that I like my time at the infusion center because the nurses are taking such good care of the patients. I feel pampered and nobody can bug me.
Ocrevus is not without challenges for some and this forum will provide you with all the good and bad.
I am JC positive and have been on Ocrevus since 2016, initially on a clinical trial. I have had no new lesions since being on Ocrevus. I first took Gilenya and got new lesions after 6 months then did Rebif for a year before my next relapse and then started Ocrevus. I considered Lemtrada after Gilenya but insurance wouldn't cover unless I failed 2 DMTs. After Rebif relapse and the availability of the Ocrevus trial I decided against Lemtrada as there was more of a cancer risk and I already had 2 skin cancers removed.I don't think there were any PML deaths on previous trials when I started Ocrevus and if you say all but one that have been reported were within 6 months of starting Ocrevus it is hard to know which DMT is to blame.
The early reports of increased cancer risk didn't make sense as the other arm had zero cancers which is not typical for the general population (one in 8 women get breast cancer sometime in their lifetime) and when I moved 3 years ago and saw a new neurologist she said the numbers were evening out.
I would ask your neuro about the true risk for both as they have access to the most up to date info.
Sorry to hear you have a new lesion and pray whatever decision you make stops the disease 🙏
Thank y’all so much! You’re a Godsend. Everyone is wonderful for spending their time to share experiences. I’m relaxing somewhat about the thought of Ocrevus. I have a long list of questions
HelloI spoke to Dr boster in Ohio about ocrevus with my fear with breast cancer he said it does not cause breast cancer as that is my fear as my mom has breast issues. He did the trial and at first the drs were worried but then it was not seen so that helped me feel better. You should speak to your dr and ask all your questions. I go for my breast ultrasounds yearly to keep on that (no mammo because young age).
I switched to O two years ago b/c of new lesions. I haven't had new lesions since then. I'm not sure the risk of PML on O is greater than other DMTs. The breast cancer risk is uncertain according to my neuro. I'm thinking the risk of more MS progression is greater than other risks of being on O. (that's just the way I have rationalized it in my mind - everything is a risk/benefit consideration)
Ocrevus is my 6th DMT over 22 years so I understand the effort that goes into switching meds. From my perspective (at least so far), it's been worth switching. I had many years of every other day flu like symptoms on Rebif. My WBC dropped quite a bit on other meds. A little bonus, my WBC came up to 5 (a number I haven't seen in many years).
I switched from copaxone to ocrevus. Ocrevus has taken away almost all of my MS symptoms. I hsve a few places on my feet that are numb & i periodocally get leg cramps. The fatigue is gone the numbness in my hands arms & face are gone. The crawling tingling on my back id's gone. I don't have to take all this meds that stopped all that from happening. I now just take baclofen. Both Kesimptra & Ocrevus are very good DMTs for MS. PML is very rare. You said you were on Techfedera which has a high rate of PML. So i wouldnt worry about too much. You should always do the research on meds before you take them. Knowledhe is Power!
There's only one way to find out. I havent had any new lesions either. I've been on it for 2 years. My neuro does blood work after every infusion to make sure I'm not JVC positive. As for being susceptible to upper respiratory infections just stay out of big box stores & crowds & was your hands often especially before you eat. If you have to into a crowded place make sure you are wearing a mask & dont face people if they are taking our stand away from them. In my opinion If everyone would do that this virus would be over by now. Since i started doing that faithfully i haven't even gotten a cold in over 4 yrs.
I have balance issues and bladder issues as well as fatigue. Do you mind telling me if you experienced any of these symptoms and they were helped with Ocrevus?
Yes, it helped with balance until the last couple of months since my thyroid has gone whacko and with bladder issues. Remember though that everyone is different and the same drugs don't always do the same thing for another person. I would have been happy to only get rid of the fatigue since that was my biggest complaint with MS & I have had fatigue & was heat sensitive since I was a teen, but didn't know I had MS until I was 50.
The listed Side Effects are the worst-case scenario and the actual chances are pretty low. It is still your opportunity to weigh the possibilities against the benefits and then choose.
I understand your concerns and I am JVC positive and extremely concerned about pml. I've been on Ocervus for two years with no new lesions which on my previous DMT I was averaging 2 per year.With Ocervus the chance of pml is very low. On the other med I don't know anything about it. The Ocervus infusion has dropped down to 2.5 hours twice a year with doctor approval.
I'm going to stay on Ocervus and would recommend for you.
Thanks a million. It’s exhausting worrying so much when theres so much else to do. I told my dr i was worried id have to stay at home to prevent exposure to infection and she told me that most of her patients on Ocrevus go to work and are around other people daily
I’ve started it twice and had no exciting reactions, but they were headache every time, chest pains once, bone pain once. The second half I was offered to leave instead of monitored, and I left. The second time around my infusions were done in my home and I don’t know if she waited an hour or what, but she probably did.
I was probably dehydrated, it was mildly uncomfortable for a few hours and I took a few more doses of Benadryl. It’s cheaper for insurance to use home health and many are doing only the first infusion in the clinics now...I had all my second round at home with a newborn! Thankfully the nurse sent was super sweet and helped me navigate baby and IV bag. I feel like the headache can be an expected side effect for most people, and boredom 🤣
Wow you have a newborn??!! That’s awesome! Id love to do the infusion at home. Can you get up and walk with the iv pole? (Like if you have to go to the bathroom?) I could cook supper and wash clothes and go about my day?
Well, that was a year ago 🤣 I have two toddlers now 😱 It’s not a pole, it’s a little sling bag and you can carry it or just carry the IV fluids with you. Wear pants you can maneuver with one hand. I think laundry and cooking would be a bit too much chance on pulling out the IV, on top of the Benadryl making you feel drunk. Feeding the baby a bottle under the influence was challenging! My mom was there for the then 2.5yr old and she had to make the bottle for me. The clinic wasn’t ideal either...I couldn’t half see for a while and was super bored stuck in a chair 😑
They only kept me an hour after my first infusion. I’ve been on it for 4 years. I usually get a bit of a headache the next day but nothing terrible.Wishing you the best.
Do you get to take ibuprofen for the headache? That usually helps me with a headache. Ive heard others say about a headache and I’m just wondering if you can take something and at least get some relief
Yes, I usually take Tylenol. It’s not a bad headache, and the Tylenol works well for me. I have 2 friends on Ocrevus and they don’t get a headache. It might be from the steroid they give you. It really isn’t anything to worry about. I have been in the infusion clinic about 8 times with 5 or 6 other patients getting Ocrevus. I have never seen anyone have any big side effects. The nurses are great about monitoring you and making sure you are comfortable. I remember when I started,
I’ve had home infusion for my last 4 solumedrol infusions and it sure makes things easier. I’d much rather be sitting in my recliner in my house any time.😄😃.
Omg i get a “daily quotations” email every day (don’t know how i started receiving that!) and today it says something about ‘don’t think about it, just do it.’ Could be a sign- although i prefer hearing the real life experiences
Hello, I read your post and had to respond. I don't have a solution but only kind words and I truely understand. I have been on the exact same therapies as you have and I believe 2 in addition to that. On yesterday I was scheduled for another MRI. I was in a not so positive mood as I normally would. I just wanted to let you know that we are so strong. No one really understands what we go through on a day to day basis. Because of that we are strong. We stay positive and strong because we WILL get through it together. I enjoy this site because someone always have kind words or a positive message and I just wanted to extend that to you today. I tested high for PML and I think about it because I dont know what to expect. I am currently on Ocevus and have been for 1 year and a half. For me I have to take benadryl 1st and Ocevus for 4 and a half hours. I am on Ocevus because we are trying to decrease any opportunities for more leisions. So for from my last MRI I can say it has been successful. Ofcourse as we know with MS everyone is different. But it is working well for me. Stay strong and send me a message anytime that you have questions. I will try to answer it the best that I know how.
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