I am trying to write a question and am unable to do so. I am going from Tysabri to Ocrevus. Would like anybody to comment on their switch. I am nervous to say the very least. I keep deleting my connection. Thank you in advance
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I believe I have seen a few conversations here regarding that and how long you need to wait, etc. Maybe a month ago. Let us know what happens!
Hello. I tried Tysabri & it didn't work for me. I did HSCT & haven't taken ANY Disease Modifying Drug since 2/2/2016. This new medicine seems to be the new & improved Rituxan. If I never did HSCT I would look into it.
Sggmcswain sorry for all your posting problems. Have you tried to clean out your history? You can also look up your questions here at
support.healthunlocked.com π
As far as Ocrevus, we have a lot of friends here that are on it, or who have just started.π
Jes π
Is Ocrevus working for people? Are you all happy with it, wanting/understanding side effects? Trying not to get worse - family, all live with, freak over my bruises. You look at me wrong and I bruise. Always have been that way.
Sggmcswain, it's Fancy1959. I have only just started ocrevus. I've been on it for 5 weeks this coming Monday. I have noticed a reduction in my spasticity but so far that is all I have noticed. As we all know each and every drug affects each and every person differently. And although it might be hard and painful to wait we have to give every new therapy time to see if you can work any magic. I believe by next Christmas or Christmas 2018, I will be able to answer your question much much better. I want to give ocrevus over a year to make its mark on me, or at least start to climb that hill with me.
The scientific literature I've scanned indicates this could be a good thing.
No history and still having issues
I was on Tysabri & switched to Ocrevus recently. My first 300ml and during the infusion only experienced flushing between 3&4 titrate up. The 2nd 300ml had no infusion reactions during, did feel a little dizzy after & fatigue next day. Now I don't go for full 600ml till mid-January. I don't feel any different yet. I had my 3 month follow up with my Neurologist & he said he had heard some patients say that after the 2nd 300ml infusion, they start to feel different in a good way or some symptom differences between 2nd & 4th week after. So...we'll see ππ»π. AND to save $, I did ask at my Infusion Center if I could take my own 30 min before pre-meds of 25mg Benadryl & 975mg Acetaminophen, of course the 100ml of Solumedroyl they have to do via IV push...but YES I can buy & take my own instead of paying the hospital costs π€ So, if u haven't yet, I recommend asking where u go for ur Ocrevus & save $ π Good Luck Everyone! ππ»π
Dact, it's Fancy1959. Great point and good to tell everyone that you can save money by taking your own pre-meds to infusions and all therapy sessions that require them. Typically you can take your extra strength Tylenol and your Benadryl with you. Talk to your doctor and if you have no issues he will make sure it's in the orders at the infusion center that he approves you taking oral medications for side effects. That will save you quite a bit of money believe it or not. Now, if you had any infusion issues or side effects they probably will not allow you to come off of there IV meds since this much much stronger and work much faster.
Once again this is a great way to point out that together we are stronger! And that we can learn a lot from one another if we take the time to get involved and read posts. I have done this for some time and I never thought to post it. Thanks Dact for posting this great information. Great job! You have become a vital and important part of our chat room very quickly. We appreciate all the members who get involved like you.ππThanks!
Hi. I was on tysabri for years. In Dec 2015 I came off of it and took Lemtrada infusion round with my second round of it last year. I had to be off of it 2 months before lemtrada. And, I did indeed have a hard time those 2 months. My ms symptoms all came out in full force around 6 weeks. But thankfully I made it until my lemtrada infusion which put much of the flares at bay. I don't know information about the new drug you are taking but my advice is to get extra rest during your "off time " while waiting to start the new medication. The more rest, the better! Good luck to you. I ππΌ all goes well!
The only thing I can say about Tysabri, it is great in the beginning. I have been on it for more than 5 years and no P M L. It is not doing as much good now. That is why my doctor is moving me to Ocrevus. I will let it be known how it works. Yes I am nervous.
I also went from Tysabri to Ocrevus in May. I don't feel any different but it will take some time to see the effects of it. I have my MRI scheduled for Oct 26th and I have another infusion in November. The first one was broken into 2 parts, 2 weeks apart. They were about 3 hours long. The next one will be for about 6 hours because it's a full dose. They also gave me a steroid shot and some benadryl before it started, in case I didn't take it well. I have to admit, I don't miss going for a Tysabri infusion every month. Now I just write everything down, my body and mood changes, for my next doctor visit.
I hope this helps some. Let me know how you're doing please
Sggmcswain, it's Fancy1950. There is nothing to the switch. They will probably let you come off of Tysabri for a month or two before they will allow you to start the ocrevus. I had no issues when I started the ocrevus. Based only on my experience I hope it will be smooth sailing and an easy switch for you. Relax and unstress! Being as stressed and tightly wound as you are right now will only make things worse. Distract yourself by doing things you like. Get plenty of rest and plan activities that will take your mind off of the future switch! Sending you a big hug for this Electronic Connection. I wish I were closer so I could be there with you too help distract you, keep you busy, and reassure you that there's nothing to it!
Infusion went with no problems. I was told I should have a gold star because things were so smooth.
I switched from Copaxone to Ocrevus and had my second 1/2 infusion on the 10th. Have had zero side effects except for being very tired for a week after. I do love getting rid of the injections! I'm hoping the long term results will be good.