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Posted: Thu May 10, 2018 8:27 pm
I just want to give you an update on my posting from november. My son had his 4rd infusion of ocrelizumab in april, and everything is still stabile since he started ocrelizumab. No side effect, not even during infusion.
Shortly after this infusion he got the flue, infected by his brother and father, as he came to visit us a few days after the infusion.. All 3 of them had high temperature for 3-4 days, and tired a week after. Being on ocrelizumab made no difference, they were all 3 equal sick.
Wish you all well
Posted: Wed May 16, 2018 6:35 am
So I saw my Neurologist earlier this week.
He said that the age concern I had (therapies not working on average at 53) was not a reason to expect Ocrelizumab to be ineffective in me. DMDs generally target inflammation, and as my disease is still active, there is still something to target! Were I typical and diagnosed in my twenties then there is a good chance that I would be through that stage and might well not respond, but Im a much later starter. He believes there is a very good chance that with less inflammation (which after all is what OMS is working at) my body can repair itself better and so my symptoms will reduce and possibly disappear. He feels the risks which are there may not be as bad as could be feared - yes a 1:25000 chance of death - I think I take that in most activities! - but the cancer stats re Ocrelizumab come from 4 ladies in the trials who had breast cancer - was that coming anyway?...
My eyesight problem may or may not be MS but a short course of steroids will give clarity (geddit?!) on that.
So in the interests of whatever it takes Ive decided I'm going to give it a go. All I have to do now, other than look out for short term reactions to the infusion, is maintain my commitment to OMS in the knowledge that others who take this drug may be doing well without doing any of the other stuff that we do.
Thanks for listening and be well.
Posted: Tue May 22, 2018 12:17 pm
Hi Ant, thanks for the pun and your realistic outlook. I regularly throw myself down mountains on mountain bikes and snowboards as well as working in "high risk" work as a Metal Fabricator so I think my risk of death may be quite higher than 1:25,000 at the moment.
I am recently diagnosed at 33 and trying to decide on treatment, I have been a casual vegetarian/vegan for the last 2-3years so making the switch and commitment to OMS diet was a pretty easy step for me. My symptoms are quite mild at the moment just some numbness in legs and fingers which improved a greatly after 3 days of IV steroids, but progression of symptoms is something that is always on my mind, in particular to vision. There is so much information out there and so many treatments its hard to know what to pick, if anything. Especially when i read that DMD's do not necessarily stop progression of the disease just the number of relapses.
First MS clinic appointment this week, hopefully it all makes some more sense after that.
Good luck with it all
Posted: Tue May 22, 2018 11:27 pm
My view was to decide to give my body time to respond to OMS before going to a DMD. I was offered Tysabri, but felt that the rebound risk if I were to come off it was unattractive, and Ocrevus doesn't appear to share that. Deciding not to do a DMD was as empowering as anything else. They say to start treatment asap, but I reckon with OMS we do that every day so wasn't in a hurry.
Good luck with your process.
Posted: Wed May 23, 2018 8:05 am
I was at the MS clinic today, its funny what they don't tell you. They were recommending Tysabri over Gilenya and Ocrevus (the 3 options I was given), but nothing was mentioned about the rebound effect. Just did some quick internet searches and it really has made it an unattractive option. Need to do more reading...
Posted: Tue May 29, 2018 1:20 pm
In Georges OMS book there is a chapter on medications, this is really worth a read. it won't have some of the newer meds in it eg Ocrelizumab, but it give you a good run down on the others available.
Posted: Wed May 30, 2018 12:37 pm
Soo new update that I think is a massive one....
Had a MRI On Friday the 25th (I can handle MRI anymore so have to be sedated, did manage to meditate even though I was a bit out of it..)
My Neurologist called on Monday the 28th Telling me NO active lesions! And some shrinking!
re cap my story :
Big relapse August 2017 from walking to not being able to do much. 20-50 steps* a day..
Started Ocrevus on the 8th Jan 2018, very slowly coming back to me but way off.. Manage 10,000 steps a day now. Strict OMS for the last 6-7 months but can always get better.
Goal like all of us is just to be me, would love NO meds for this and if thats what I can get to I will !!
I am not saying this is for everyone but soo far i'm doing ok.. Need a better support base but what I have is some very important people and that will do. It is up to us I am learning the hard way and best way I guess.
Posted: Mon Jul 09, 2018 1:09 pm
Thank you for sharing your progress, it really is sounding positive for you, well done!
Would love to hear how you are doing toward the next dose, keep up the good work Matt.
Posted: Mon Jul 09, 2018 1:11 pm
Sorry Matt, I meant Michael...... Its late!!
Posted: Tue Jul 10, 2018 5:57 am
Hi Pipi and everyone
Well I am the day after my first full dose so 2 half's and a full under my belt now..
With my MS and OMS I didn't feel too different leading up to the next dose but maybe the last week a little less motivated and my step count was lower by a 1/4 for the day give or take..
Was a long day started at 8am and left at 3pm, no bad reactions. Had 3 meals in that time that helped for sure! Only non OMS thing that I had was Gatorade before and after and again today.
Woke still tired (not too un-normal) mood has stayed the same all day mid range could be the pre meds.. Didn't have much trouble getting to sleep. Same same will see how I pull up this week.
4 in the afternoon now and for the first time in months I may have to take a nap.
Be well and let me know if this info is helping out..