Everyone Fancy1959 giving you my weekly update on my Ocrevus therapy. I really don't expect any changes for several months. But dare I say over the past week it seems as if my muscle spasticity has definitely gone down significantly. I have little to no spasticity on a regular basis already. Half my next hair infusion next Monday October 2nd.
I also wanted to know that I have had zero negative side effects from the Ocrevus infusion. No problem at the infusion sites and no other negative side effects at all. I continue to pray on a daily basis that Ocrevus proves to be the "Miracle" therapy that so many people with MS so desperately need. Please join me in this plea......
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Fancy1959
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Fancy1959 , this is the BEST news! I'm thrilled to hear you are doing so well and had no side effects from the infusion. I'll be praying for you and the many others here who have started Ocrevus. Yes, may it be the answer! 💕
Wonderful news, Fancy1959 , may this be only the beginning of positive changes for you. I can relate to your "dare I say" very well, as I've been trying not to get my hopes up or read too much into good days as I don't want to jinx anything! I'm glad that you handled the infusion and immediate recovery period so well, that part was rather rough for me, but a small price to pay if the benefits continue to accrue. Keep us posted and congrats.
Ssdw1958, it's Fancy1959. I pray you will experience with Ocrevus goes as smoothly as mine has. I will also pray the positive results continue to grow on Ocrevus and it is the miracle drug we have all the been waiting for.
Hi Fancy1959 thank you I am also hoping that everything goes alright I am anxious and am hoping everything goes alright.
I also have to say my neurologist told me to stop taking the Tecfidera and I have seen that I am able to pick my foot up a little bit more but not all the time.
So we will see how everything goes next week.
Be well I will say a prayer for you and everyone who has a sickness.
Yesterday, I discussed Ocrevus with my neuro. She has 120 on it. No one reported worse. Some minor improvements in numbness, spasticity. 1 she said can now walk to the bathroom without his walker.
Of course none of her patients have had more than the first 2 initiation infusions but sounds very promising 👍
Erash that sounds better than the promising, that soùnds wonderful! I went to Neurologist today and we had talked about Ocrevus. His office is involved in a stage two study of a study that regrows mylin. I asked if I would qualify or if being on Ocrevus who would knock me out of it and he said yes it would. Then he started comparing Ocrevus to Lemtrada he had very positive things to say about lemtrada. I asked if I should have here started Lemtrada instead of Ocrevus and he said no. That Ocrevus will be much much better once more data is collected through years of clinical research. He was very excited about Ocrevus and said I was right where I belong until something better came along. I asked then about the possibility of PML and he said all the hype and worried about PML with ocrevus was absolutely bougeous! I'll go into more detail if anyone is interested. Thanks for your continued support and encouragement. You are a solid pillar of this chat room and I don't know what we would do without you. Fancy
Fancy1959 That is great news I hoe to talk to my dr in Nov regarding possibly changing to this Can I ask what have you trie in past and why you chose this route
Kerry0915, it's Fancy1959. I don't believe we spoken before how long after I had with some health issues of my own so I wanted to say welcome aboard and we're glad you found us! You have found a safe place to come and ask questions, to voice concerns, to sometimes vent while speaking to others who truly understand what you are going through. This chat room is full of some of the most compassionate, caring, and kind people I have ever known.
As far as asking what therapy I have been on before I don't mind answering that question at all. I started out on Rebiff that didn't last long at all since I had injection site issues and I symptoms for increasing while I was on the drug.
My Neurologist immediately switched me to Tysabri which was the most effective therapy on the market at the time. I saw remarkable Improvement on the drug for the first 7 months but the PML risk was always lurking in the background since I was JC virus positive. When Tecfidera was approved my doctor switched me to that. It seems to go along smoothly for about the first two years but shortly after the second year anniversary I started noticing a worsening in my symptoms. It turned out I was being attacked silently and I had taking a large hit while on Tecfidera. I went from Relapsing-remitting Ms to secondary Progressive while on tecfidera.
I went backto Tysabri stayed on it another year and three quarters but my JC virus count started to elevate and I was having side effects after each infusion and it made me extremely nervous so I quit it. I had to wait about four months to get on Ocrevus once the floodgates opened on it. I had my first half and she's in a battle 8 days ago and I have my next test infusion next Monday. So I'm just getting started but like I said I've already noticed a reduction in my muscle spasticity and I am tickled to death about that!
That's where I am today and I hope it helps. Take care and I hope to talk to you soon. Remember together we are stronger! Fancy.
Can you keep me updated on if the improvement in spasticity hangs on for weeks months or if you are were just having a few good days. It be awesome to have some relief.
Debs5997, it's Fancy1959. The JC virus is a normally benign virus that a large percentage of the population carries without ever being aware that they have been exposed to it. It is the kind virus with no ill side effects until and that is a big UNTIL, is exposed to certain medications or therapies that it does not play well with. An example of this is Tysabri. Before any MS patient is started on Tysabri undergo blood work checking to see if they have been exposed to the JC virus. Newest test for this actually rage your exposure to the JC virus on a scale. This shows exactly how bad you've been exposed to the virus and how high your virus count is in your blood. When you're positive for the JC virus you have to be careful taking certain medicine like Tysabri. The longer you stay on the drug the higher your JC virus count can climb as you continue to respond negatively to the drug with your virus count. Typically you have about two years grace period where it is relatively safe to take the medicine in question . The neurologist keep tabs on your virus count on a regular basis every 3 to 6 months at the very least. If things go very wrong dip and your Jay-Z virus count goes very high you run the risk of getting what is called a PML infection of the brain. The infection is caught very early it can be fatal. So it is obviously nothing to mess around with. I hope this helps. Remember to always get your medical advice from your neurologist. They are the expert, most people in this chat room are not doctors.
Fancy1959 that's wonderful news. I'm so happy for you. Praying that this is exactly will turn this monster around for you. We are all praying for you and prayer is a powerful tool.
What the devil plans for evil God can change to good.
Fancy1959 That is such good news. I too pray that this will be the help so many need and perhaps be the beginning of new therapies to come! Best of luck with the second half. Hopefully it will facilitate even greater results.
Fancy 1959 you give me hope. I was told that Ocrevus would slow my downward trajectory and maybe even halt progression, with an outside chance of regaining some of what I've lost over the past 23 years. I am one week past the second half of the first dose and while I am not any worse, I haven't noticed improvement. I know it's early so I continue to hope for the best...for all of us.
Debs5997, it's Fancy1959. I pray that the new therapy Ocrevus gives many many people with MS new hope. To my neurologist today I explained I was already seeing a decline in my spasticity. He told me what we do not see on any of our scans is the underlying inflammation that MS causes. He told me that Ocrevus is designed disrupt the communication between the A cells and T-cells by wiping out the A cells. When Ocrevus shut down the communication, it took away the spacsicity the interaction of the two cells caused.
Remember Deb that everyone's MS is different than everyone else's so hopefully you will be seeing some positive results in the near future. I will pray that it is so for you and for the entire community who fights the disabilities that MS causes. Together we are stronger!
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