Update

Hello everyone I hope and pray y'all are doing ok. After the first absolutely wonderful Friday following my first infusion of Ocrevus, things were a little tough. I will say that I have be3n feeling better in some aspects. I don't feel quite the extent of exhaustion I had been prior. I still am worn out quickly however there has been some great improvement over being so whiped out every minute of the day from the time I would wake to the time I could finally sleep. I had an issue with my eye yesterday. Thought a possible eye infection was trying to set in. However after rest I was able to put my contacts back in today so I had merely scratched it. I have had 4 Charlie horses in my right shoulder the last two days that have left my right arm almost completly useless... ugghhh... Though the majority of my spasticity has been not quite as bad overall other than my arm. My feet are pain free most of the time, I have been able to climb the stairs into my RV with out the use of the hand rails. I have never been able to do that! I can tell my muscles have been leftsuch a weakened condition. For the first time I am wanting to find a way to be able to maybe start some physical therapy here in the near future. 😆 Other than these pesky spasms that won't let go for anything I am doing pretty well overall. I have been sleeping quite a bit but the rest is doing me well. Just happens not to be at the most normal of times.

As for my infusions, the first was on the 4th. It was half a dose to allow my system to adjust to the medication. I recieve the second half on the 18th. They are 3 hour infusions. After my second half on the 18 they will go to 6 months between them and they are 5 hr infusions. They start the infusion with Benadryl and a Steroid. I had a bit of vertigo for about the first hour and a half but slept on and off most of it. I did have a round of vertigo yesterday afternoon for a couple hours on and off. But can't say that's the meds case that normal for my reality now! Ha ha ha... just another day in 🌴 All in all still feeling better overall. More to come in the following days, my arm is killing me!!!

Y'all are in my thoughts and prayers

Allen

13 Replies

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  • Thank you Allen5280, I am sure everyone here will appreciate you keeping us informed. I hope and pray that you continue to improve blessings Jimeka 🦋 🌈 Does your arm hurt because of the infusion?

  • Good luck to you please it us know of any good days and bad days I am hoping for all good days for you:)

  • Allen5280, it's Fancy1959. I,can understand that you are anxious to see improvements with your first infusion of Ocrevus, realistically you must give it more time and try to relax and just let your body heal as you said. Once you receive the second infusion, try and relax and give it a month and see if you notice any changes. I am still extremely excited for you to be started on Ocrevus!

    I start Medicare on June 1st and my doctor wants to apply for me to start Ocrevus sometime in June and hopefully I will be on it before the end of summer. I can't wait either! I always had extremely bad cramps in my calfs and in my feet until I started eating fruit in the morning. I have noticed a huge reduction in the cramps to the point they are all but non-existent as long as I eat my fruit in the morning. For my muscle spasms I got put on a muscle relaxer called Baclofen. Has your doctor ever prescribed that for you? It might be something you could ask for just to see if it helps for 30 to 60 days. At the end of that time if you see no difference then you can just get off of it if you wish and if your doctor approves.

    Keep us informed Allen! I will continue to pray for your speedy recovery! Keep up the good fight MS Warrior! We are all cheering you on! Remember together we are stronger and we can make miracles happen!

  • Yes I was on baclofen for several years until it became ineffective, now I take zanaflex which is also becoming somewhat ineffective as well. Might as well be eating Skittles. I have changed my diet to where I eat slot of potassium to try and combat spasms but it doesn't help. When I talk about muscle cramps I have them to an extreme. At my worst point I counted over a hundred of them over my entire body. Some as small as a bb and some more the size of a golf ball. MS has managed to wipe out 8mm of 9mm in the bottom of my medulla where the brainstem and spinal chord meet. In the front of that area is muscle control amd the back side is respatory function so it causes me all sorts of agony. There isnt a muscle in my body that is not effected, yes thst means my heart as well. I am one who is plagued by a horse named Charlie who doesn't have a whole lot of compassion towards my plight. I have had NO infusion sight reaction so far. My shoulder hurts because of spaticity. It won't let go for anything. Even with it I am feeling somewhat better in other areas of my body.

  • Thanks for the update. Excited to see how this medicine helps people.

  • Allen5280 glad to hear things are looking up for you!☺ As Fancy1959 mentioned, there's baclafin for spasms, some people also have mentioned Botox. Something else to check into.

    Jes🌠

  • Allen5280

    Botox helps with my chronic migraines; I won't tell you it's an easy cure, but the injections I get in my head and neck are much better than the pain I get from the migraines. Botox is something I highly recommend speaking to your neuro about. My neuro gives me my Botox injections every 3 months. He/she is the one you need to speak with about your muscle spasms! Especially the one you have in your arm!

    Sounds like you're having luck with the infusions (sounds like you are, that could just be me though) I'm going to speak with my neuro about switching to Ocrevus next time I see him. I definitely want to switch to the infusions myself. Keep telling us about how it's working for you.

    Thank you for the update!

    Jennie

  • Allen5280, I'm thrilled that you have seen a lot of improvement! Our more sedentary lives leave our muscles weakened, but I'm betting with increased mobility and some PT, you'll see improvement in your strength. Hearing about the gains you've already made are so encouraging! Bless you for taking time to tell us about it! I'll be praying for more improvement!

  • @Allen5280, I am anxiously following your posts and I'm sending good thoughts your way!

  • Thanks for the update, good luck!

  • Hi Allen,

    Thank you for the update on your infusion. Hope that it continues to make you feel better. All the best!

  • Thanks for the update. I am supposed to start Ocrevus any day as soon as the paperwork is complete.

  • So glad to hear that you are doing well overall! Sorry about your arm hurting. I will be beginning Ocrevus as soon as i am approved. Allen, thank you for keeping us informed.

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