Its that time again! My 6 month mark on ... - My MSAA Community

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Its that time again! My 6 month mark on Ocrevus.

Allen5280 profile image
23 Replies

Tommorows the day! The day for my first full dose of Ocrevus. My last six months have been filled with ups and downs. However, even with the ups and downs the last 6 months have been better than the past 3 years or so. Last months MRI; no new lesions or progression. I have been quiet here on the forum but that's in part due to me doing more. I started Physical and Aquatic therapy a few weeks ago and I am much stronger than I have been in a long time. I have had some skin issues with infections. The actual infections are not because of Ocrevus, just takes longer to heal them. I have had some folliculitis probably due the steroids but it has been tough getting it to clear up, but getting better. Also had a nasty fungal infection thst took some time to clear up (jock itch) however, all in all, I am doing much better on Ocrevus. Even on my bad days, they are not nearly as difficult as in the past. Reduced pain levels. My PT has now gotten to the point of where I am feeling more like I am working out than in therapy. I have more energy and can get more done. I am hoping that the improvents continue through the next 6 months as well. Y'all as always are in my thoughts and prayers.

Allen

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Allen5280
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23 Replies
jimeka profile image
jimeka

Allen5280 that is such good positive, hopeful news. I am so happy for you and so pleased that your pain level has decreased. I will be praying that this next dose will be even more productive. Keep in touch when you are not so busy working out. Blessings Jimeka 🦋 🌈 🙏 🤗 🍫 🍫

Allen5280 profile image
Allen5280 in reply to jimeka

Well, it's not just the PT, I have fallen so far behind on things that need done I have been able to begin getting all caught up. There also has been the depression I went through that had me held up in my solitude. It began getting better when I started therapy. My hope for life has been restored. I have been so very lonely that I felt completly useless. I have as of lately had my hope restored that I might actually be able to pull myself out of a state of uselessness. Only time will tell. I must say that therapy in no way has been easy, but the better things get, the harder I can fight to attempt to have a life again.

oklaguy profile image
oklaguy in reply to Allen5280

great!

jimeka profile image
jimeka in reply to Allen5280

Allen5280 it just proves what a fighter you are, your faith has served you well. Keep it up and keep smiling, blessings Jimeka 🤗

bxrmom profile image
bxrmom

Allen5280 I am glad that you are starting to do better. Depression can be really hard to get yourself out of, so glad therapy has been helping you dig out of it and you are getting stronger.

Jessie

oklaguy profile image
oklaguy

that is good to hear! hope the next 6 months continue to show improvement!

greaterexp profile image
greaterexp

Allen5280 that is such wonderful news! I'm so very happy for you! Your also taking important strides (no pun intended) in strengthening your muscles and taking good care of yourself. Congratulations! Thanks for keeping us updated. You remain in my prayers.

Royjr profile image
Royjr

Great news!!!!!!

kdali profile image
kdali

Fantastic!! I'm so very excited for you and hopeful that the next 6 months are even better, and so on. Thank you for the update!

Doubled51 profile image
Doubled51

Great news Allen. Keep up the good work in or. I've been in or for the last 3 months strengthening my legs and back for strength and balance. While my balance is still messed up my legs are much stronger. My therapist just told me due to being diagnosed with MS insurance will cover an additional 10 visits. Though I can't say I love the work out its sure helping me get stronger and more active.

Good luck and god bless

Donnie

Qt314grl profile image
Qt314grl

Thank you so much for sharing. I’m newly diagnosed and I love hearing about treatment success.

Raingrrl profile image
Raingrrl

Thanks for the update Allen5280 ! I was wondering how you were doing as you were one of the first to try Ocrevus. I'm glad therapy is helping you with your feelings of depression and isolation. I have a wonderful counselor that I see periodically when I start to go down the rabbit hole. She keeps me in check. Tough stuff to get past sometimes. Especially for those of us that are fighting the MS beast solo. Keep fighting the good fight and let us know your progress.

Allen5280 profile image
Allen5280 in reply to Raingrrl

Raingrrl , I was in mental health therapy for about 14 months following my initial diagnosis of MS. My life was falling apart and i needed it quite badly. I am at the point now where i have the tools necessary to cope, some things talking cant fix. The things I am beginning to find that I was needing are a challenge. Challenging myself, setting goals, realistic goals. Finding ways to be happier with the small victories and not let myself be overcome with what I don't have in my life any longer. Even though I am not feeling all that well today, my success in my PT goals are getting me through this. I am looking forward to getting back to it as soon as I am able. Thank you for your supportive message, I greaaatly appreciate it.

WAshingtongirl profile image
WAshingtongirl

Allen5280 , I'm praying for you. It's always good to hear from you, and to hear of the improvements you've noticed and felt are encouraging! I hope today's infusion doesn't wipe you out for too long, and that you soon feel the benefits of the full dose. 💕

Allen5280 profile image
Allen5280 in reply to WAshingtongirl

Thank you WAshingtongirl

Yooper profile image
Yooper

Allen5280: Hope and pray you continue to improve!! 🙏. God's Peace and strength.

Allen5280 profile image
Allen5280 in reply to Yooper

Thank you Yooper

Artgirl15 profile image
Artgirl15

Glad to hear about your progress. My doctor has recommended ocrevus. Any negatives?

Allen5280 profile image
Allen5280 in reply to Artgirl15

Artgirl15 I humbly apologize for failing to respond more quickly. Sometimes I forget that I failed to respond. Yes I have had some issues. More a inconvience, would truly be a better description. If taken in context in comparison of side effects I suffered with the 3 other DMD's I have tried. (I must apologize, I can see my grammar errors but am unable to piece together the corrections) cognitive issues at times manifest themselves when I am under stress. It limits my writing abilities at times. If you wouldn't mind looking back over my posts you would be able to get a much better picture of my issues since the beginning of my ocrevus journey. I apologize for my inability to piece it all together into a quick list.

Artgirl15 profile image
Artgirl15 in reply to Allen5280

Thanks, Allen5280. I think your posts will be helpful because they will give me a running commentary on your experience.

I hope things continue to improve for you.

bavery207 profile image
bavery207

Allen5280 What an uplifting post! I was so excited to here good news from you. I hope the good news continues. Let us know.

Juliew19673 profile image
Juliew19673

Allen thanks so much for posting this. I was diagnosed in May this year and had Ocrevus at that time, but had no idea of what to expect than that it would shrink the lesions that are on my brain. It really helps to hear from others - si thanks!!

Allen5280 profile image
Allen5280 in reply to Juliew19673

Juliew19673 , sure thing this was a post from 8 months ago. I have been trying to keep updates going throughout my Ocrevus journey. If you would like, you can click on my profile and check out all my posts that I try and keep updates going and keep everyone informed of my progress and all.

Thoughts and prayers,

Allen

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