The Ocrevus roller coaster 🎢

[Allen5280]

Here we go again, alot like my first infusion, a couple good days then well.... Here we are again. I believe I compared the day after my infusion to feeling like superman. That being the case, today someone stuck Kryptonite in my socks. I had quite a stressful day yesterday. Why is it that those around us, whom well know our situation in it's entirety, still find it necessary to throw their burdens onto our shoulders? Even though they are well aware of our condition and what stress can do to us? It sometimes completely shocks me how grown adults can revert to such childish behaviours. Anyhow, back to the point at hand. I started feeling like the life was being sucked out of me by some invisible force last evening. I was going to write my post last night then decided to wait until I had a good night's rest. So much for that, I woke and feel as though I haven't slept for a week. Had my coffee for I needed to be sure cause my mornings are "normally" not very good. As a matter of fact my new normal mornings have become the toughest time of day. Being stationary for long periods of time let my spasticity cramp me all up. When I wake in the morning it's a normal 3 hours of trying to get myself around and work out all the cramping so I can function. My first 2 infusions I also suffered weakness for a period of time after my infusion so it looks like par for the course. After my first half dose I had a couple really good days then about a week of weakness. My second infusion I had about 2 weeks of weakness, I am hoping the duration will not be quite as long. Weakness is not an uncommon things for MS so when I am talking about this weakness it is above and beyond what my "new normal". For example, as I am writing I am hoping I will be able to muster the strength to shower. If I accomplish that I will most likely feel victorious today. Just have to take it in stride. I plan to keep the updates coming as changes develop. I would also like to state that even so, it's far better than the side effects I dealt with on Tifecdera, Gillenia and Copaxone. I am hopefull that the extreme fatigue will pass soon. I am relatively optamistic on that due the vertigo hung around quite a bit longer with my first two infusions. This time around I was quite a bit less pronounced and short lived in comparison. I won't be pushing myself much at all here in the next few days. Will keep my updates coming for those whom are interested.

Thoughts and prayers

Allen

[ssdw1958]

Hi Alan this is Sandra I am interested and in the way glad to know I’m not alone my first infusion my legs where like rubber that night got better then my second infusion I felt pretty good even my husband said my walking had improved but now let’s see My first infusion was October 17 then my next one was obviously then two weeks later my walking was not good now it is November I believe it’s the 18th My walking has somewhat come back a little bit better meaning my left foot which is my drop foot I am picking it up more. Which makes me feel a tad better but right now I have a headache like you can’t believe so I need to take some ibuprofen. I’m glad to know that someone else has their ups and downs with this Ocrevus. I thought it was just me I’m glad someone else is in the same boat but we’re not sinking yet. I don’t know what the weather does to you but there is a big storm coming cross county and is coming in tonight I think that is throwing me off to. But tomorrow is another day we will see what happens.

I hope you feel better. Bye for now Allen it will be interesting to find out how your doing?

[Allen5280 in reply to ssdw1958]

ssdw1958 , hi Sandra thank you and I will keep everyone updated as I can. My initial weakness slowly improved after my initial two doses and continued to get better over time. With reduced spaticity I was able to get into physical and Aquatic therapy and I was stronger than I had been for many years. I have PT on Monday and hopefully I can keep that appointment. Only time will tell. I am very hopeful that this will get easier over time. All the things I have come across from the Ocrevus trials, it was the general consensus that it will. I have a hypersensitivity to meds and this has been by far the easiest for me even with some of the issues. I will keep the updated coming to hopefully help others during the process. We did have a big temperature drop here and the wind is whipping like crazy today. I have noticed that with the onset of MS I am more sensitive to outside and inside influences. Pressure and temperature changes. My ears pop like I'm on an airplane when fronts pass through. I seem to always have tougher days around the full moon. If I eat badly, I pay for it. Junk food and me... do NOT get along. To much sodium in my diet, bad bad bad. To many sweets I'm gonna feel crappy. So I'm trying to take it all in stride and make the changes to have the best possible outcome even if it's not something I particularly enjoy. With my spaticity and neuropathy, or sucks... but its getting better and had greatly improved my mood. So Im not going to quit without a fight. Thank you for your support it means a great deal to me.

Thoughts and prayers

Allen

[ssdw1958 in reply to Allen5280]

Hi Allen I to have to watch the sweets big NO NO but that my husband got too much candy for the tricker or Treaters and guess who has been indulging in it yes that would be me, my husband too. The weather well I missed my calling I should have been a meteorologist the funny thing is not really funny after my second dose of Ocrevus the constant pain I was having above my knees went away but it is now come back. The first time in at least over five years I didn’t feel pain. the cold weather is also back. Here in New England (USA) the weather was nice for awhile but now it’s below normal. And a storms is coming in tonight. I have to hang in there, because there is nothing else to do.

[Allen5280 in reply to ssdw1958]

I am sorry about the return of your pain, I am no stranger to it myself. After my first infusion my muscle relaxer (zanaflex at the time) became ineffective, doctor changed me to flexaril and my spasticitity was back to a tolerable level. I had that happen before when on gilenya, started out on baclofen. Hopefully your doctor can help get that pain under control. I have noticed that my pain levels have somewhat decreased since I have been on Ocrevus but it wasn't an all of a sudden type deal. As I began being able to do more I worked through and since starting physical and Aquatic therapy my pain levels got better as well. The diet changes I have made may play a factor in as well. My pain levels were high enough I developed secondary hypertension. When my pain gets up so does my blood Pressure. I have been trying many things to keep the pain at bay. It may not be just one thing making a difference, may be more like a piggy bank and alot of little pennies adding up to get myself into a spot where I can tolerate everyrhing.

[jimeka]

Allen5280 please, please, don't get too down and despondent. So what, you can't have a shower, it won't hurt to miss one day. I am sorry that you have had the wind knocked out of your sails again. I am still hoping and praying that this Ocrevus will be the answer for you. Rest up dear friend, keep us posted, blessings and prayers Jimeka 🤗 🍫 🙏 🌈

[Allen5280 in reply to jimeka]

I am ok jimeka , I am still hopeful that it won't hang around as long this time around. Also having been here before,I know what to expect and it will pass. Hopefully sooner than later. Just trying to keep the updates as things change. Even now I wouldn't go back and not do the infusion I knew this would be a high probability going into it. Still better than the alternatives so far and it has so far been doing it's job keeping MS from having its way. I am still in good spirits and just getting through the whole process while trying to let others know what's in the process. 😁 see all smiles here, tired smiles but still smiles.

[ssdw1958 in reply to Allen5280]

Hi Allen I have to say I also had an infusion of meds for osteoporosis and a flu shot this past week and that flu shot I had a slight reaction to it. I am gluton for punishment. LOL

[Nom_De_Plume]

@Allen5280 I am heartened by the positive impact Ocrevus seems to be having on you! Thank you so much for sharing your updates along the way. Your first-hand account is very helpful, challenges and all. I hope you continue to get stronger. 😀

[Doubled51]

Praying for a speedy recovery and back to superman status soon. Don't feel bad. I missed both my pt appts last week because of fatigue. But ill try my best to start over tues morning.

Good luck and God bless my friend.

Donnie

[Allen5280]

Doubled51 Thank you Donnie, I'm going to do my bddst to keep my PT appointment tomorrow. I won't have the strength to do what I have been but it's better than sitting staring at the wall wishing I was. It will come back just how long is the question.

Thoughts and prayers

Allen

[BigMar7]

Allen, I hope things get better for you, you have a positive attitude so that’s a huge plus, keep hanging in there my friend!😀

[Allen5280 in reply to BigMar7]

BigMar7 thank you, it will get better. Just have to push through the weakness for a little while. Just getting by the best I can till I start the upward climb outta this.