Last reply 3 months ago
Drum Roll for Ocrevus tomorrow…

So, tomorrow I go in for my first Ocrevus infusion after five or so years on Tecfidera, which is no longer working for me “too many relapses in recent times” I’m kinda nervous if I’m honest more so for a rejection or bad reaction to the change in DMT?
Any tricks or tips for a brother, about to break his Ocrevus v card; what should I expect?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


itsmewithms
3 months ago

I just started a couple of months ago and it went well. There will be a nurse with you watching you closely 😉 You will likely have somebody accompanying you? My husband came along. Reactions in the first infusion are common. They will be dosing you with stuff to minimize them or manage them I think it is benadryl type stuff. It was my husband that noticed one of my ears got red and I had a bit of a blotchy rash on a cheek. It didn’t itch or feel hot, just some coloration so they stopped the infusion for like 15 minutes to manage that and then restarted. Finished without further incidence.

For the 2nd half infusion a couple of weeks later there was no reaction so next time for the full infusion he doesn’t need to come with.

I brought along my laptop to work on a project but the nurse says people do that but feel a bit drowsy and typically just rest…I’m not typical as I did work on my photography project I had going 😉 didn’t require too much concentration. Keep in mind that you will have an infusion set up in one arm so that will limit you somewhat…I went with my left arm so I could still use my right more. I also brought some snacks (nuts and hand fruit) and a book in case I didn’t want to use my PC and just wanted to read. If you have someone to keep an eye on you then you are good but next time my husband doesn’t need to come with (as the second infusion I had no issues) so I will bring a mirror with me just to spot any rashes or anything physical should it come up as I honestly didn’t notice anything physically the first time.

They keep a good eye on you ; -) you should do fine. I made sure and had a light meal when I got up before I headed to the infusion center and had a good glass of water. They gave me a bottle of juice which was nice as when they flush the line and start the benadryl stuff before starting the infusion there can be a metallic taste for some people.

Good luck!


citizenk
3 months ago

Hi, I truly appreciate your advice & words words of encouragement, thankfully I got through it without any issues at all, the only thing that really affected was the antihistamines which made me drowsy & forced me to doze off part of the way through.
I also took my laptop not for work per se but more so for the entertainment factor & to keep me occupied, along with a good book.
Although you do end up meeting loads of people there with whom you can talk which is nice. And thankfully I end up with a lift home from somebody who lived quite close to me so I also managed to save on Cab fare which is always a plus.
All in all the infusion went well with no complaints, my only hope now is that the drug works for me long-term and my relapses are few and far between, better still none at all “wishful thinking” but let’s see how it goes…
Many thanks once again… Be well & God Bless. Gerald


itsmewithms
3 months ago

Good luck! glad it all went well. I didn’t really have any issues following the infusion except I did not sleep well that first night and I think I took a benadryl which then did help me sleep. Whenever I don’t do much or take a nap I seem to have a harder time sleeping the night after, which make sense.

In my second infusion I had no reactions and I think they used less of it so it was faster and I did more. Sounds like that is pretty common. Hope you have good results, it seems like that varies with some people seeing improvements after the infusion and others just holding steady.


kayleyjay
3 months ago

Thank you both for this information. I have recently been recommended ocrevus, so it is informative to hear from people who have recently undergone treatment.


itsmewithms
3 months ago

@kayleyjay just a reminder- you can also search any topic following the tags below a post or using the magnifying glass in the upper left- Good luck with Ocrevus. In one of Dr Boster’s You Tube videos he said it is the most commonly prescribed DMTs right now. It hasn’t been on the market long so the Neuros must really like what they are seeing for results? I just started it this fall as well. Dr Boster referred to it as “a gamechanger”


kayleyjay
3 months ago

Thanks


dominics
3 months ago

If you search for Ocrelizumab/Ocrevus you’ll find a load of posts.

Bon chance. It works for me!


citizenk
3 months ago

@itsmewithms yes it did go well, met some great people all at different stages with their MS and got some great info & also shared our experiences & stories which is always an education in itself…

Ding ding for the second round infusion in 2 weeks which I’m not so apprehensive about going for now, after getting through this first stage without any issues…

Improvements would be great to see but holding steady would suit me fine also tbh, especially with all that I’ve been through in the last 6 months or so…

You mentioned Aaron Boster in your comment to “Kayleyjay” & I have to say I’m also a subscriber to his channel.
I think his channel is a great place for all MS Warriors, newly diagnosed or seasoned vets to gain valuable knowledge & insight about the condition, as there is always something new to learn on this journey…

Thanks again for your own advice & tips… Love & light, be well & stay blessed.

Gerald


itsmewithms
3 months ago

Yes, I have learned a lot through Aaron’s videos and Ohio isn’t so far away for me…I’ll be tempted to visit his center if I need to although the Mayo is only two hours away with their Neuro center with a strong MS focus…and then there is always U of M in the Twin Cities as well. I am fortunate to be surrounded by great medical facilities…sometimes I even hear of studies out of the UW Madison area.

Hope you rest well after your experience and feel good. I didn’t have an residual effects really one way or the other. Slight improvement is what my PT guy would say-


citizenk
3 months ago

@kayleyjay You’re welcome…
Just to let you know that I got through the first bout of my Ocrevus infusion without any issues at all & I go for my second in a couple of weeks… But only time will tell, ultimately how it works with my body…

Just as “itsmewithms” shared in her comments, there are links/tabs below fir you to find out more info.

There are also many videos and articles to see & read online about Ocrevus and do check out Dr Aaron Boster’ videos on YouTube if you haven’t already, they are very informative… His recommendation “along with several other reviews, not to mention the consultation & guidance from my neurologist that Ocrevus is one of the most effective MS drugs available made my descision to go with it somewhat easier.

So, with consultation from your neurologist & the vast amount of info out there, I hope you are able to come to the right conclusion as to what DMT you will go with “or maybe not”even? As it is your choice at the end of the day…

Whichever route you take, good luck, be well & God Bless. Love & light.


citizenk
3 months ago

@itsmewithms As have I, so grateful for his channel.

Sounds like you have some great facilities where you are in the US & are also fairly close to Dr Boster, would be great if you got the chance to meet him personally & pick his brains on some questions you might have?

I’m based in the UK & am fortunate to be under the care of a professor in the field who works at one of the leading hospitals in the country and a team of MS nursing staff who are great and on hand or at the end of the phone if and when needed.

You mentioned rest… lol… So when I got home late this afternoon around 4.00 pm UK time, I usually only eat one meal a day or “OMAD” Intermittant Fasting but I had a little something extra to eat when ai got home. They do provide food at the hospital but it’s never really that great, not to mention Im super particular with my food and what I put in my body so I had a simple salad to soak up & absorb the cocktail of drugs I was having… Got home had something a little more substantial to eat then I completely crashed for several hours…

As you can see I’m up now 2.00 am UK time and my insomnia has kicked in lol… I guess sleeping part of the way through the infusion & also when I got home this afternoon, hasn’t helped….
Oh well, such is life, I think a shot of CALM magnesium powder & then a cup of Chamomile Tea might might be the order of the night I think.


skiathos21
3 months ago

Good luck x


kayleyjay
3 months ago

Thank you. I am currently on tecfidera, but due to a fairly bad relapse recently my neurologist recommended I switch over, to which I was reluctant, although most people are saying its having a positive effect. I just get nervous of all these big pharma drugs that haven’t been on the market that long. I actually didn’t take any form of medication for 6 years as I was so cautious. Thank you all for your advice


citizenk
3 months ago

@kayleyjay Wow, your story is very similar to mine… I went 8 years eau naturelle before deciding to start a DMT which for me was also Tecfidera.

Initially when I was diagnosed I read Dr Terry Wahls’ book “The Wahls Protocol” about how certain foods or food principles “namely Paleo” can reverse “s it did for her” MS and other autoimmune conditions.

So, choosing to do things naturally & holistically I went about completely changing my dietry habits and also my way of life, in the hope that it might work for me too, and yes some things it did help with, like weight loss “which i needed at the time so that was a good thing and generally I did feel a lot healthier but sadly it did not work for my MS & I was still relapsing all too often so I decided to try Tecfidera.

5 years on and after careful consideration & consultation with my neurologist, not to mention the countless reviews & testimonies I’d heard from others I decided to try Ocrevus, and so that’s where we’re at today… Only two days in mind you but I’m over my initial reservations & feelings of anxiety… I’m more positive about moving forward and seeing how I get on with this new treatment…

So I wish you all the best on your own journey and I hope you find all the options that best suit you & your way of life… Be well & God bless.


lawrencehofer
3 months ago

have you gotten results from drug?


citizenk
3 months ago

@lawrencehofer Hi, if your question is for me then I’ll have to say it’s still early days… I had my first infusion on Wednesday & my second will be on the 3rd of Jan.
So far so good, I felt a bit of a weird sensation in my legs when I got home and the following day but if anything they just seemed to feel lighter & not as heavy as they would ordinarily and I seem to have a bit more of a spring in my step although I still have some stability issues.
I did feel a sense of extra energy & was more keen than usual to lift my home gym weights but that was probably because of the steroids?
All in all ive had no serious issues or bad reactions which was my main fear on the run-up to going in but it’s still a little too early for me to review how Orevus is working for me but I’ll keep ya posted.
Be well & God bless…


itsmewithms
3 months ago

Interesting that @citizenk says a feeling of “lightness”…I too was feeling that a bit. My right foot has drop foot and my right thigh seems heavy and that was not so much 😉 interesting way to put it. I am now 1 1/2 months post the second half dose


citizenk
3 months ago

Yeah, @itsmewithms this has continued through to today and with it I’ve noticed significantly more instability in my gait & more instances of drop foot.
When I went for my morning walk “as I can’t really run anymore” & whilst on route to my local store to pick up a few things, I was noticeably walking zig-zagged and had several instances of losing my balance “a lot more than usual”?
I will be monitoring this very closely over the coming days and will be sure to mention it when I go in for my second dose on the 3rd of Jan.


itsmewithms
3 months ago

@citizenk My “lightness” seems like a good thing for me as my right leg always seems heavier than my left leg…but yes walking a straight line isn’t often achieved…I’ve heard the line “but officer, I haven’t been drinking, I just have MS” in a very funny comic somewhere but in real life it isn’t that funny ;0 But in general I feel more positive about things, am considering doing more and making plans, now just if my body will agree to carry through…


citizenk
3 months ago

@itsmewithms… Lol at the joke “I’ve not been drinking officer, I just have MS” Lol
In reply though, I also agree, that the feeling of lightness in my legs does appear to be a positive, yet weird change for me also, just that the instability & drop foot seemed to come on a tad more than usual, but in speaking with my close friend and neighbour who lives on the same street, in fact directly opposite me, who also has MS & Ironically we share the same neurologist too & to top it all off I share the same name as her ex-husband… “weird coincidence I know” she said that the change in DMT will do that and one will almost certainly feel something strange or worse still, have a relapse before things get better.
She herself is on one of the earlier DMT”s “Copaxone” which they changed to “Brabio” I think, and when she changed she had an adverse reaction so they switched her back but apparently “Copaxone” is slowly being discontinued as I understand but is still available in some parts of the country.


itsmewithms
3 months ago

@citizenk although you are “across the pond” we have much in common ;-0I asked about intermittant fasting or fasting mimicking diet as my husband does this for his UC and as MS is also an “auto immune” it is being researched as well.

I commented on one of the last Dr Boster videos of what we would like to see in future segments- and he put a “like” on it

I also sent this link- https://news.usc.edu/101187/diet-that-mimics-fasting-may-also-reduce-multiple-sclerosis-symptoms/


citizenk
3 months ago

@itsmewithms, Hey there… Yes, it would appear that we do have some things in common for sure ;0)

Kudos to your hubby for doing IF and if Its helping with any health issues he may have then more power to that & I wish him all the best.

So I’ve been doing “IF” and more recently “OMAD” for several years now, initially it started as part of a Keto/weight loss plan that I entered into, starting with a 16/8 then I gradually lowered my eating window to 18/6, then 20/4 and slowly it became a way of life for me and I now do a 23/1, one meal a day guy, no snacking in between, just fluids, water, tea, ACV, the ocasional smoothie but only during my earing window, and to that I’ll add MCT oil and stevia to sweeten. Thats the only sweetner I use, I stopped all forms of granulated sugar, and I don’t even do honey, maple syrup or agavae anymore!!!

I do eat some carbs now though, whereas before I completely cut them out “for weight loss” but I will say that for the most part, the carbs I eat are more so “complex carbs” and I eat them sparingly.

I did a lot of my own research into IF before doing what I now do everyday & reading the report from the link you sent confirms what I’ve also come to know and that is, that when the body is in a fasted state, via IF or prolonged fasting, autophagy kicks in and a cycle of cell repair & regeneration happens which ultimately prevents inflammation & nerve/myelin damage, not to mention the “visceral fat” weight loss which happens as a result of all over bodyweight reduction, and this also contributes to less inflammation in the body as a whole. there’s also improved mental clarity the all important anti ageing.. As I wanna keep looking youg for as long as possible right…lol.

Keep me posted with anymore info regarding IF and its effects on MS as will I if I see or hear of anything informative to pass on…

Have a blessed one & be well.

Gerald


itsmewithms
3 months ago

@citizenk I will keep the group updated if I hear any support for IF. My feeling of “lightness” could be better described as “bounciness” I feel now. I think this is a good thing but being a bit “bouncy” also results in some instability as well. At this point I am just rolling with it and trying to take advantage of it with getting around more and during PT sessions.

The holidays are no time to start IF so I think that waits until the new year and then I think my husband has some dietary ideas for me ;-0 he is the cook and master of that end of the house

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.