Drug Therapies

Hi all,
I was just wondering if anyone has started this new medication as it is now approved and being used in Australia at the moment. it sounds interesting, just wondering if anyone is experiencing any side effects, and are you noticing any benefits from its use? My neurologist feels it will be a very popular medication with patients . I have read a lot about it but have not met anyone actually on it!
Cheers
P

My son has been on ocrelizumab for a year now. He just got his 3. Round. Hi does not feel any side effect at all, not even during infusion. MRI a month ago showed stable condition since starting on ocrelizumab. No new symptoms. Combined with OMS I hope his MS has stabilised. His only remaining symptom is some numbness in his fingers.

Hi Inge,
Thank you for your reply, that sounds fantastic for your son. Having no side effects would make the whole process so much easier, I wish him good health and happiness. Combined with OMS life style he is sure to very well indeed.
Best wishes
P

I started in Jan 8th 2018 of this year after my worst relapse ever! Aug 2017. I did start OMS that week and was off all meds from that time also. I am RRMS* and felt I was improving everyday with OMS but was still not at my pre base. Dr wanted me to start tysabri but my JCV was too high, he had 10 people to give the med to before it was on PBS etc. Pressure and still not being back I started. has been 50 odd days now and though I am getting better I am still not what I was before my relapse. I will add I only did 2 weeks of oral steroids as my neuro doesn't like IV steroids..
Do I feel like it will be good for me, yes. Do I now think OMS is the most important YES (all 7 steps not one or two..) Do I think I would of / would be back to my base just on OMS maybe.. For me I now have hi anxiety and worry about progression, I need to stick with my mediation and de stress as much as I can and I am on my way.

Dr says I should be back to my 'base' with in the next 6 months. I am hoping for this and better with OMS. Still think I have a lot to learn.

Hi Michael,

Best wishes on this new medication, I hope you are feeling better and get back to your base line very soon. Keep up the meditation and other aspects of OMS it will also help you without a doubt.
If you feel up to it could you let us know how you are going on this med maybe at 3 and 6 months. My neurologist was keen to swap me over also, but I am not sure as yet. It does seem to have a better safety profile in regard to PML unlike Tysabri.
Just wondering with your last relapse had you come off any strong medication...... was it possibly related to a rebound episode?

Take care

P

Hi P,

I was on tecfidera for the last 18 months and betaferon for 6 years before.. Had no issues on betaferon but asked about non injectables.. Silly... Also silly not to look into MS protocols. Was always relatively healthy but still lived like a 26-34 year old....

What pushed me over was STRESS, in a big way and also don't think Tec did anything for me now with lesions on my spine and more in the brain.

Ocrevus :
First half Jan 8 2018 - Good for the first week then slowly back to what I was before Oc
Second half Jan 22 2018 - went a bit lower to what I was before taking it. Regarding balance, lower walking & step count, back to using rails up and down stairs, wobbly..

60+ days on Oc. slowly getting better but still far from base. Zaps down my spine, right arm still numb.
balance - getting better walking & step count up a little, stairs using rails less on the way up , down yes depending time of the day..

Still hopeful but did feel better just on OMS.. Long game they say

114 Days post first half;

Well it has started to get a bit cooler in Brisbane and this is helping me a lot.

A lot stronger OMS, meditating everyday some days better then others, still have a lot of stress in my life that I am trying to get stronger with.

Walking is a lot better the past 2 weeks, have been working very hard from relapse now in small steps of 3min walks then 5, 7 now doing 8min, started 1 x time a day then 3, 5 times etc (base was a little limp) of clean walking heal toe.. Get a bit wobbly now my goal is 10k steps a day... but have done it for the last 7-8 days!

Right arm and hand still numb for the most part

Right eye still blurry under stress or tired days so maybe 80% of the time

When I move my head down the shock feeling isn't really noticeable

Hard to say what is the Med and what is OMS.. Still overall not at my base but am getting stronger, balance is still hard at stages of the day / night, when in public everything goes out the window and I have to hang on to something until my confidence starts to come back.

Key for me will be reducing my stress eating more raw and or Vegan meals , train harder when I can. Really important for me will also be finding a better support base.

Let me know if this is helpful or any other info you would like.

Michael

Dear Fellow OMSers
I would be interested in any more updates from Ocrelizumab (O) users.
I was diagnosed 4 years ago. My symptoms come and go, but nothing debilitating on a regular basis. My worst symptom comes if I paddle my surfski for a long time and overheat; then I can lose my core so not be able to sit up (bad news on a surfski!). It was suggested I start Tysabri 18 months ago but I held off to give OMS time to work its way through my body. In the last 5 months I've developed irregular poor vision in one eye, and I'm anxious to get that under control. My last MRI was 6 months ago and there was a new large lesion on my brain. My neuro offered to put me on an O trial and I was tempted. However they then found a melanoma which has been cut out but rendered me ineligible for the trial. Since then O has been made available on PBS and I'm off to see him in a week - I am sure he will recommend O.
My thoughts:
Try It: It seems that O is a better alternative than most DMDs, but I am also aware that Roche/Genentech are flooding the market with positive commentary about which I must be cynical. I believe there has been one death, but that the victim had been using Tysabri for 6 or 7 years previously which may also have been responsible. Other side effect comments that I can find seem minor. It is the only treatment for PPMS (tho I don't believe I have that), and I want to prevent my eyesight from getting worse. I understand that there is little rebound risk in coming off O. Can trying O make my symptoms worse?
Not sure: I'm 56, male, late diagnosis, disease still active so at greater risk of deterioration, but also pretty OMS diligent and don't feel as though much has changed in the last 4 years and I've never had a relapse, just varying symptoms. I take LDN (3mg).
Don't try it: GJ posted a meta analysis that suggests on average none of the treatments help anybody over the age of 54, so why should I risk it? Its interesting that the age cut off for the trial I was offered was 55 - is there a connection? If I can avoid taking a pharmaceutical I should. Why should I suppress my immune system? Get some Steroids and see if that helps the eyesight issue. HSCT treatments seem to be gathering momentum, so hold out for the big fix...if I can ski and paddle a surfski what have I got to complain about anyway?
Thanks for listening. All comments welcomed

Hi Michael and Ant,

Thank you so very much for sharing your story and thoughts!

It just brings home how brave and how trusting some of us have to be when listening to advice from medical practitioners. What ever it takes right? When it come to OMS lifestyle it really is empowering in so many ways.....I love it.

I spoke to my neurologist recently about Ocrevus, he is quite highly regarded in the world of MS in Melbourne , he told me some patients are telling him they are not feeling an improvement until after their 2nd or 3rd dose of Ocrelizumab......it sounds like patience plays a role here. I would be interested to see how you are feeling after your next dose Michael, but staying active is very important, I wish you all the best with this.
I also remember reading a quick article last year , that stated that after being on Ocrelizumab and then stopping it, it has the potential to "reboot" your B cells to behave normally (that is stop the attack on myelin)....I am sorry I cannot find it but will keep looking .... has anyone else heard or read about this? If I come across it I will share it with you.

Good luck Ant, keep us posted on your endeavours , I hope you find the path that you feel will truly help you!

Take care
P