Multiple Sclerosis Experience With Rebif, Tysabri and Ocrevus
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- Опубліковано 10 лют 2023
- Thank you for watching @SaraslivingwithMS. I created this channel for multiple sclerosis awareness and support. This is my review and experience with Rebif, Ocrevus and Tysabri.
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My videos do not provide medical advice and are for informational purposes only. The videos are not a substitute for professional medical advice, diagnosis or treatment. Please do not disregard professional medical advice or delay in seeking it because of something you have read or seen in any of my videos.
My heart broke hearing about the cancer prognosis. You are a very strong woman and it shows. You are doing a real service for a lot of other sufferers. Good on you for putting yourself out there like this. I listen also to Aaron Boster on UA-cam and he is also a Neurologist, very nice guy with tons of useful information. He describes us MS people as snowflakes, not one of us is the same. You keep up the good hard work !! We will all kick this disease to the curb 👍☺️
Thank you so much for your support ❤️
Thank you! I really appreciate your words. It’s been a rough couple of years. I hope that sharing my experiences can help people going through similar ones.
I’m sorry to hear about all the stuff you’ve been going through❤️ I can’t imagine being diagnosed with cancer on top of MS. You are very strong and I commend you for sharing your story. I wish you the best❤
Thank you so much. ❤️ I really appreciate you taking time to comment. Lately it just feels like one thing after another.
I love this so much I have been fighting MS for 18 years and been on several different medications then I found my magic juice!!! I was on it for 4 years then due to insurance reasons I was out of a neurologist and Tysabri for about 7 months I had a flare up that turned my world upside down 😢 I'm just starting to feel better after IV steroids and a wean off. The neurologist wants me to start Ocrevus but I think I want to go back to Tysabri my magic juice
Thank you so much for sharing.
Hope you're keeping well❤
Thank you!
You're absolutely gorgeous 😍 I'm in the midst of trying to get my own answers. praying for you!
I hope you get some answers
I will be praying for you, I am so sorry this happened, please if you need to talk to any of us just know we are here and you are never alone, God Bless you and your 🙏🏼❤️
Thank you so much ❤️❤️ I hope you are doing well!
I'm thinking of you, Sara. Thanks for the video. I've had paresthesia episodes since a week before Xmas. I'm waiting for my initial neurology consult in April.
Thank you!! I hope you get some answers. If you can bring someone with you to make sure you are asking the right questions and getting answers. It can be overwhelming to remember everything.
@SaraslivingwithMS Thank you for the suggestion, Sara. I am a social worker, so I have experience with physician consults. I will have a list of questions. The more I read up on patients' reporting about MS symptoms and Tx...I see a pattern of medical incompetence and years of symptoms without a Dx.
Thank you so much for the information. I have been on Copaxone for almost 15 years. Now my neurologist is suggesting I switch medication’s. I’ve tried a few, but had side effects with all of those that I could not tolerate so now we are looking at tysabri
thanks a lot for sharing,, you are very helpful and have helped me and many others now that i’ve seen an authentic video not produced by some medication company
Thank you so much because that is what I am trying to do, get more support and knowledge about the MS and the real experience I have had with meditation!!
I was Dx in 2005 when there were far fewer choices of DMTs so I was started on Copaxone and after many years and many more lesions I switched neuros as I moved. My new neuro thankfully agreed to a more aggressive treatment and when he saw the injection site damage being caused by Copaxone moved me to Rebif. My liver counts started to creep up and I could never adjust to a full dose. I also always felt like I had the flu the next day so I then moved to Ocrevus and have been on that since. Now several years on Ocrevus and I feel stable. I have been more aggressive with my PT in the last year starting to walk more (even time on the treadmill each day and looking forward to a trip to Scotland in a month. The "foot drop" I developed several years ago damaged my hip joint enough I had to have it replaced- I do not recommend! ;-0 but, like I said, I am back to walking more now. I started with a PT with a lot of neuro training (recommended) and she correctly Dx that calf spasticity was more the issue than foot drop and regular botox shots into the calf have been helping as well as baclofen and tizanidine. I have always been JC+ so haven't considered Tysabri but those that can take it seem to like it and do well on it. Glad you are and hope you continue that way ;-)
🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽 God, please bless her with health and recovery.
❤️ ms diagnosed since dec2020 hang in there 🙌💯 the invisible opponent is hard to hit! I still believe in Miracles!
Thank you!! Hope you are doing well.
All my love Sarah and like many of my friends, I hope that your Breast Cancer is cured my darling. I have had 4 friends with this frightening disease and all have been cured and are post 5 year remission, - one is now 20 years still in remission.
I have MS like you- dx in 1994 when there were no DMTs and once there were, have had to switch many times due to low WBC’s (Avonex), low lymphocytes (Tecfidera) , Anaphylaxis (Tysabri 3rd infusion) & necrotising fasciitis (Copaxone - only 11 people in the world in the drugs history have had this!!) so I totally get the frustration of having to switch treatments when you just want to make your MS not get worse.
I’m just about to start Ocrevus or Kesimpta so 🤞🤞🤞for both of us sweetie
All my love & support
Rae xxx
I declare total healing for your body. Thank you for creating this channel. Do you think the Ocrevus caused the breast cancer?
I’m on Ocrevus.
Thank you! I do think it did. The doctors can not confirm or deny. 😐 I caught mine with a mammogram very early. I would recommend keeping up on those ❤️
I'm a 57 year old man and I am considering switching from rebif to ocrevus. The main reason is that I find it very hard to keep up with the three times a week injections and often forget to do them. Sometimes I think my cheese is sliding off my cracker lol .The injection site reactions have been not severe but noticeable.
I read some of the ocrevus pamphlet and I'm concerned about some of the possible side effects. Yours was the first video I watched on the subject and I hope there are many more videos with the kind of honesty thank you've shown here. If I were religious I would say I will pray for you but I'm not, so I can only wish you the best.
What are you on now? I was on rebif only to find out I had neutralising antibodies… switched to copaxone - started having relapse after relapse so my neurologist said ‘this is never going to work for you, you have rapidly evolving ms! We’re going to put you on Tysabri’… this was my miracle drug! I was fine, going great until I tried the Tysabri injections but they let me down now I can barely walk properly so I’m now back on Tysabri IV and I’ve never looked back! Hoping that my Tysabri iv can fix the crud the injections caused but it’s a 50/50… 😢 In the uk, it’s either every 4 weeks or 6 weekly infusions… I am NOT letting my Tysabri go! I hope u get what u need! 🤞🏻👍🏻
I'm on ocrevus and loving it
Oh Sara. I’m so sorry…breast cancer too.
Luckily, I caught it early. Thanks for your kinds words
Correct me if I'm wrong, it sounds like these drugs are not very effective. I remember years ago taking Rebif ,the needle jab in the gut, I quit that one quickly as it made feel like it was simply killing me.
I have only taken medications since to try to alleviate pain.
Hang in there girl!😁
Do you regret taking ocrevus? Do you think it can be dangerous even for mens? My doc suggested me this treatment. I hope you can be better, I'm gonna to pray for us! Forza
Yes I regret it. I wish they would of just started me on Tysabri. Just do your research!!
@@SaraslivingwithMS yeah, I'm reading a lot, I'm considering asking for kesimpta... All the best for you, beautiful
It always worries me that MS drugs suppress immunity and ability to fight infection given that I was told that 85% of Cancers are Born from Infections. As Such ~ Double Edged Swords? Don't know if that's True
The ocrevus is what caused the breast cancer.
I think you should have continued with Rebif because it's safe in the long term. You can't evaluate a drug after four months, a therapy needs more time to prove its effectiveness. Unfortunately there have been several cases of breast cancer with Ocrevus and Tysabri may increase the risk of developing PML. I wish you all the best
Thank you!
Rebif is not the answer, tbh. I took it for 8 years and was so sick all the time. It also completely destroyed my thyroid gland & it's now non-functional. I have breast cancer in my family, so I switched to Gilenya after a lot of pressure to start Ocrevus. I'm really happy with it.
Hi, I am on Tysabri for 9 yrs and I felt so good, unfortunately I am jc positive now and I have to stop. I am so confused, the doctor want me to switch for ocrevus or mavencad. I am so scared :(
Breast cancer????? Good grief!
For what it's worth, they have me on Rituximab (sp?) I just had my 1st treatment (1000mg infusion) in Jan. Two more treatments to go. I hope you get better. That Dr asking you what you want to take is the worst I have ever heard of.
I was shocked. What’s the point of going to a neurologist if they ask you what to take! I hope you are feeling better too! Thank you
How is rituximab working for you and how are the side effects.
I was suggested rebif to start following 5days of Acthar gel I just finished.
I’m scared to take anything!!!
@@jessievenable3570 rituximab seemed to work fine. No side effects. MS is still pretty new. I'm looking for a new Dr. / 2nd opinion. With only a 13-month diagnosis, still unclear if I have RR or PPMS? Last episode lasted over 2 months so Dr pondering PP. Remains TBD. If PP he wants to utilize an alternative B cell depletor. I forget the name though. Work in progress.
I think I would prefer if my neurologist asked me what I prefer to take and I collaborate with him or her to reach a consensus we hopefully both agree on. It is my body and I will be the one who has to deal with any long or short term effects of any drug. While these ms drugs are giving people cancer and lord knows what else that the patient has to deal with, the neurologist is at home in the comfort of his own environment totally unbothered.