Ocrevus

[rlh1974]

Ok, So I know we have beat this subject to death. I have decided that after reading results and study after study results that a 2.3% chance of cancer is too much for me. I have told you guys, I am the 2% !!!!! Not the rich one! Since the trial pool was so small. Do the math and that risk grows exponentially. Just about every one of my family members has experienced Cancer except my mom. I have decided to wait and see how it plays out. Besides. I loos my healthcare at the end of August. I get the RX at the end of this month. So I would only get 1/2 a dose. So whats the point?

Also, There is that other drug that Ocrevus is really an updated version of that drug that starts with an R. Sorry brain fog. I would rather get on that. It has a great success rate. Also seems to be much safer and has been on the market since the 90's. Has a success rate with PPMS also.

So that is an update on Rob. It is finally setting in, that Federal disability is coming in September. almost no money and no insurance for 2 years. Relying on my broke state of Illinois to take care of me and my family. Also, One of you stated that filing for disability is crazy. It is like they try to catch you in a lie! It is nuts!

Heres to being on a breezy beach. Have a great day everyone!!!

[Pink-1]

I am starting the 11 day cleanse probably Tuesday to rid myself of any leftover aubagio. I must say I'm very nervous about it but probably will do it. Sure wish we could hear more from those already on it

[Fancy1959]

Rih1974, it's Fancy1959. The way my disability is progressing with my Secondary Progressive MS I have decided I will take the risk of cancer if I can stop this crippling disability. I was extremely active four years ago and on bad days seeing myself all but forced into a wheelchair now is unfathomable for me and totally unacceptable.😟

I hope to be on Ocrevus by the middle of June. And I will be sure to let everyone know how it goes.

[pamgarner in reply to Fancy1959]

you are where I am, start my treatment July 16 then july 30 for 1st treatment. I recently purchased a lightweight transport chair, hardest thing to get my head around, but if me and the hubby want to do things that involve a lot of walking, I need to be pushed. I don't want him to stop doing things he wants to do.Ifound out they make a wheelchair you can rent for the beach, I am grateful for things that make my life easier, gotta do what you have to do, huh? pam

[Allen5280]

Hello rlh1974 I hope and pray Ocrevus isn't the cause of the cancer in some of the trials. I also have a family history of cancer. However, as Fancy1959 put it, stopping this disabling affliction it of the utmost priority. I understand your concerns because for me I couldn't take Tysabri for the risks were to high with the pml. The risk vs reward statistic was just not enough. With Ocrevus it seemed to be better, now only time will tell. Pink-1 I am sorry I have not been posting more. I am doing well so far with the Ocrevus. I have been worn out but from my understanding Ocrevus actually makes the immune system go active as if it is fighting an illness or something like that and the fatigue is improving slowly. I am doing better with it than any other dmt I have tried. I did fall out of my rv head first the other day. Lucky for me the stairs and grass broke my fall. 😂 I am very, very sore. Otherwise I feel ok. I have been resting and sleeping quite a bit. hopefully I will see continued improvement into next week and can start getting back up and going somewhat. Y'all will be in my prayers.

Allen

[Fancy1959 in reply to Allen5280]

Allen5280, it's Fancy1959. Please be careful and don't push yourself too hard period falling especially face or head first we both know can be very serious so take it very easy. I am glad the Ocrevus in the reaction you were having to it has settled down. I was worried about you there for a while. Take it easy and let it do its job. Let me know how it's going. I am very interested in hearing every detail especially since I hope to be starting Ocrevus within the next 2 to 3 weeks. Thanks and remember together we are stronger!

[Allen5280 in reply to Fancy1959]

Fancy1959 I am doing better today last couple days have been feeling my spill. I put it as head first out the door cause I didn't land on my face luckily. The steps in my house (rv) have some give to them and I bounced and flipped over and landed on my shoulder and did hit my head a little but not bad. Made me a little dizzy but thank the Lord it could have been so much worse. I am feeling a bit better today so I am on the memd. Just a few scrapes and bruises. I thought I had been being careful but I guess one little moment of thoughtless movement and whoops... I remember the last thought through my head when I realized I was having a MS moment was.. oh crap... not now... this is gonna hurt.... it's kinda funny now that I am ok.. I hadn't fallen in such a long time it caught me so off guard. Thank you for everyone's concern, prayers and heartfelt wishes.

Allen

[TonyiaR7 in reply to Allen5280]

My neurologist says it is hard to know; a person maybe was going to have cancer or the drug made it come sooner. She says the risk of infection is higher than the risk of cancer. I hope she is right. I have still been watching. I too tried Tysabri and was afraid of PML risk. But I had to stop because blood pressure kept lowering - worse was 64/40 and I was symptomless.

[jennie62]

Oooh, forgot about the cancer risk! I'm still going to talk to my neuro about it, but then again he may bring up other treatment plans.

Fingers crossed all goes well with your trying to get SSD rlh1974 . It's so worth trying for it.

Took me 4 years going through LTD with my former employer (uh, yeah former employer says everything right there). Once I was no longer getting LTD and hired a lawyer on my own, SSD was approved quickly! You are so right, they do try to catch in lies, At least the former employer attorney did, but once you're approved YOU'VE GOT IT!

2 years of having SSD you'll be put on Medicare Part A and because I sat down with SSA people, I was told it really doesn't mean 2 years until you have Medicare. They take into account the time it takes to get your SSD started. My suggestion is to contact Medicare and ask about the Medicare Savings Program they take into account how much money you bring in yearly and (they could) pay for your Part B Medicare and help you get Extra Help that helps with prescriptions.

Haha, can you tell what I used to do? Had to ask a former coworker to RE-explain things to me because of my Cog Fog. Only some of it came back to me. So much for being the HIICAP (Health Insurance Information Counseling and Program) Coordinator.

Allen5280 Head first? WOW! Here I thought I was the only one who experienced falls!I hope you feel better quickly! AND NO MORE FALLS for any of us!

[ssdw1958]

Isn't it interesting how you work for someone for over ten years and you think they are with you HAHA they are not so for all you people that have newly been diagnosed be careful who or if you even tell anyone at your job that you have MS or any disease. Be very careful. You might think i am paranoid I am not what happened to me I don't want it to happen to anyone else you see I was57 years old when I was out of work I carried the insurance our son started college. I could go on but I won't like I tell my sons when they were younger

Think before you do or it should be think before you say

[rlh1974 in reply to ssdw1958]

I am very well taken care of as far as benefits. I work for a major car manufacturer. But as far as people go. I have worked with these people on the same team for 11 years. Not one person has called,texted, or emailed me to see how I am. These people I thought were more than coworkers. That is what hurts. So much! I texted one of my supervisors, whom I developed a good friendship with. She said. We can talk when you come back. What is that!? The entire thing hurts!

[jimeka in reply to rlh1974]

🙏 🤗

[ssdw1958 in reply to rlh1974]

rlh1974 I know what you mean with people you thought were your friends and. They don't even call I got a text about three weeks ago I replied back but said I would love to go for coffee but would need a ride haven't heard from her again. I know what my mom felt like when she got cancer she had two close friends they would go out for lunch, I asked her if they ever called her she said know I asked why she told me they never called her ever since she told them she had cancer. My mom has been gone 25 years and had cancer for 12years Now I know what she went through. People can be so rude and ignorant I have more I could call them but I will be good 😊

Just wanted you to know your not alone.

[Karen-x]

I'm glad you have decided to hold off on the Ocrevus. You are too much of a hot mess to add something else. 🤣

And the work thing does hurt. I worked with two ladies for over 20 years and I didn't hear from them either. Even when I went to clean out my office after I was official done, barely anyone said Boo to me. It's like people don't know how to handle it so they just dont.

[Raingrrl in reply to Karen-x]

I think you are right Karen-x ! Most people don't know how to handle it or what to say. Typically when they know anything at all about M.S. its the worse case scenarios. I was able to work with it in secret for 17 years until some changes in the workplace caused me so much stress it kicked up my symptoms. Even with that, my primary symptoms like fatigue are invisible. People were shocked when they found out and some had a hard time understanding why I'm pursuing disability because I 'look so healthy and normal'.

[rlh1974 in reply to Raingrrl]

Raingrrl OH I hate that saying!'But Oh! you look so good!" Gah! If I could shove words down someones throat. I would. And I am normally a big sissy!

[CalfeeChick CommunityAmbassador in reply to Raingrrl]

I was put on permanent disb. at age 50 because of very aggressive osthearthritis. Especially in spine and hands. Even then I had to fight the company I'd worked at for almost 25 yrs. When I finally was approved, it felt like my disease was legitmized.

Even now, after almost a year of MS, my friends say, "But you look so good!" Maybe their just trying to make us feel better.

[ssdw1958 in reply to CalfeeChick]

Don't you love it when they say that only if they knew what you felt like every day. Don't get me wrong I don't wish MS on anyone.

[rlh1974 in reply to Karen-x]

Karen-x Hot mess BWUHAHAHAHAHAHAHAHA! I have decided a lot of people just suck.

[rlh1974 in reply to rlh1974]

Oh Karen-x thanks for the compliment though.

[Karen-x in reply to rlh1974]

I'm always here for compliments!!

[rlh1974 in reply to Karen-x]

I will always take them! I am old fat and just about useless. So I will take em! HA!

[Karen-x in reply to rlh1974]

Listen, I just spent 4 days in a hospital psych ward. We will not talk like that about ourselves anymore! Understood sir?? 😊😋😎

[rlh1974 in reply to Karen-x]

OMG! I just saw this. I am so sorry you had to go through that! I don't wish that on m y worst enemy, especially people I truly like!

Also, I only speak the truth. I just got on the scale. I am way over weight. So that is true. Second. I am old so that is true. and the useless part may have been a bit of self pity. So only half true.

Karen, please know you are in my prayers!

Rob,

[RobertCalifornia]

ocrevus is not treated by my insurance company as a prescription, since it is an infusion done at a certified clinic, it is classified as a procedure. You. Can not self administer Ocrevus.

[rlh1974 in reply to RobertCalifornia]

RobertCalifornia that is just dumb!!

[ssdw1958]

That is stupid I wonder thif the doctor writes it up anothe way the insurance will take. Try it you never know.

[TonyiaR7]

Filing for disability isn’t as bad. I had the option to go in for interview or over the phone. I knew if they saw me, I would look like a normal person with some difficulty getting around. Also, I was told by the person I had that most MS patients endure so much by the time they apply, they make their symptoms not seem so bad. But if you explain your symptoms compared to when you didn’t have MS then that would be more accurate. I actually was given 2 year of benefits because they said I should have filed sooner.