My 3rd Ocrevus Infusion is August 15th f... - My MSAA Community

My MSAA Community
5,726 members13,212 posts

My 3rd Ocrevus Infusion is August 15th for PPMS

ExSoCal54
ExSoCal54

I just wanted to know how many people on here that have PPMS and if you are getting Ocrevus to treat it ? And if you have seen any Improvement in your Symptoms?

I can't notice any difference except I feel like it has still symptoms have still progressed and I do know during the trials only 23% showed improvements. So I can only hope that it going to do something for me and at least keep me functional and slos this dreaded disease down for me.

I can also say that I Qualified forAssistance with Ocrevus and will be getting this Treatment for Free except for $70 that Medicare doesn't cover and it's FREE :) until I either don't need it or want it which is Great News. :)

8 Replies
oldestnewest

I have had my first three doses and I to am not sure if it’s doing anything but my doctor asked me what I wanted to do and I said I wanted to keep taking it because when I was taking it I think it was the steroids were making it look like it was doing something for me si he is not going to give me the steroids but give me fexofenadine 180 mg one tablet for three days prior to the Ocrevus. Which is fine with me so I will see if it does something for me. The Ocrevus that is. My new dose is in September. I’ll let you know if it makes a differents.

ssdw1958

Fancy1959
Fancy1959CommunityAmbassador

ExSoCal54, it's Fancy1959 and I just wanted to welcome into this fantastic chat room since I don't remember speaking to you before! It's been a comedy of errors on my end my notebook went into the shop to get the screen fixed so I was without a connection to the chat room for 10 days then last 3 days. In addition I have been working for the past 3 to 4 weeks on to 30 hour training courses that my husband and my oldest son have to have in order to do a job down in Tennessee. They've done these training courses repeatedly in the material is always the same so I'm just going through the Maneuvers and listening to the Spiel and then answering the test for them. But it is very time consuming.

Like I said welcome to the chat room and you have found a safe place to come and ask questions, voice concerns, and simply speak to others who truly understand what you're going through! I do not have primary progressive MS but I do have secondary progressive MS and I too was sliding down that slippery slope tord worse and worse disability. My doctor got me on ocrevus about a year ago and I get my second full infusion this coming October. It's hard to be patient but what I can tell you is that in April of this year I had my first clear MRI that I had in the past 5 years! I had no new lesions and no active old lesions so I count that as a huge Improvement and step in the right direction. I hope you can find such positive results after your next infusion. I'm glad you got ocrevus assistance and make sure which I think you said you did but you get assistance with the infusion itself because that alone in Kentucky here cost about $18,000 and you sure don't want to get stuck with that kind of Bill out of the blue. Congratulations again! If you haven't any other questions feel get a hold of me and good luck! Fancy1959.

Jazzyinco
Jazzyinco
in reply to Fancy1959

Hey Fancy! We all really missed You, & kept Praying u were all right!🙏👍😍😃💐🌹🌷💝🎁Love you! So, very Glad you are back!💖Much Loves, Prayers🙏 & Blessings to ya!---Jazmine Rose

I know many have said they feel better after being on "O" for a while. However it is my understanding that it is not supposed to make you feel better, just slow the progression. I think it would be interesting to do a study to determine what percentage of individuals actually feel better after being on "O" for a while

I’ve had two treatments after having Rituximab, Steroids and a litany of other drugs to combat the effects of PPMS.

I can not say that I feel better, my progression is still going, so I don’t know if the treatment is working or not. It’s a tough call to say I’ll stop it, because if it’s actually slowing the progression, I’d hate to see it come faster. I equate it to snapping your fingers to keep tigers away. I don’t see any tigers, but is it really effective? I wish I could give you more positive statements about it.

I’m going to continue the drug until there is something better.

CraigS funny you should say snapping your fingers I was on Tesfiders and that helped me snap my fingers and now that I am on Ocrevus I can also snap my fingers but I can do it every time I try I can snap my right hand more. Not my left hand the MS ehas effected that side more my neurologist asked me what I thought about the Ocrevus and I told him that I was not Shore if it was doing anything but with the weather it might be but working but the weather creates havoc with me and he did ask me if I wanted to stop and I said no since I only had three doses. Then he did all the tests that they do and they haven’t gone back wards they have stayed the same. So I’m going to keep on the Ocrevus for a little bit longer.

Like you said I don’t want to go back ward.

ssdw1958

ExSoCal54 I have PPMS and just had my 3rd dose (2nd full dose) of Ocrevus Aug. 1. About 3 months ago, my fatigue started to lift and I have had more energy in the afternoons than I had before. Otherwise my symptoms have stayed the same or worsened just a little. I seem to depend on my cane more when I leave the house. Good luck to you!

You may also like...