Ocrevus Issue?

[jsb0410]

Hello to you all!

I had my first two half doses of Ocrevus last month. I had previously been on Aubagio but it was discontinued due to cardiac issues (tachycardia and hypertension)

I have autonomic dysfunction which was diagnosed in 2012 after several syncopal episodes. I am on two cardiac meds. I have been stable for years on these medications until this month. I had a syncopal episode and ended up going to the hospital as my bp was extremely low.

Since then I have had several other pre-syncopal episodes.

My cardiologist upped my doses and hopefully we can avoid anymore issues.

My bp since the infusions is running much lower which puts me at a greater risk of syncope.

Have any of you had any issues with Ocrevus causing lower blood pressure or cardiac issues?

Sorry for the long post

Thanks!

[rjoneslaw]

This is a very good question it will be interesting to hear people responses. I'm to start on this med in June.

[Raingrrl]

For several years I’ve taken a med for tachycardia that also keeps my blood pressure in check. I thought it would be adjusted when I lost a bunch of weight in the last 18 months but it hasn’t. I’ve had both 1/2 doses and 2 full doses of Ocrevus without any issues so far.

[jsb0410 in reply to Raingrrl]

Hi thank you so much for responding! I’m glad that you haven’t had any additional issues with tachycardia while on Ocrevus. Thank you for sharing I appreciate it very much!

[ahrogers]

I have been on it 3 years without blood pressure problems. If anything it has come up very slightly over that time but still in normal range as I used to average around 106/60. It drops a little during the infusion I think more from the Benadryl but back up by the time I leave.

I hope you medication adjustment helps!

[jsb0410 in reply to ahrogers]

Thank you very much for your response! I’m glad to hear that you have been on it for awhile without cardiac issues. I am curious as you have been on it for 3 years have you had any relief from symptoms?

Thank you so much!

[IFwczs]

I had my first full dose of Ocrevus in February 2019 (and on Tecfidera for 4 years prior to that). No BP issues.

[rjoneslaw in reply to IFwczs]

can u tell a big difference between the 2? I'm purging myself of Tecfidera to go on Ocrevus. June will be my 1st infusion

[jsb0410 in reply to rjoneslaw]

Hi! As far as the Aubagio I had side effects pretty quickly after starting. I had the bp and heart rate issues, gastrointestinal issues and hair loss. I started it in June 2018 and it was stopped at the end of July. I didn’t experience any relief of symptoms while I was on Aubagio, but in fairness I was on it shortly.

It took a very long time to be approved for Aubagio with funding and I did not have the first half dose infusion until 2/28/19.

From the two half doses I had flu like symptoms for about 4-5 days post-infusion. The infusions themselves were fine and without issue.

As far as relief of symptoms, I am back to baseline since the infusions. I would say in the past few weeks I have had more “good” days but not specific improvements. Hopefully with the next few doses I will potentially see some changes.

I hope that you have success with the Ocrevus! My neurologist has told me several times that 1/3 of Ocrevus patients experience an improvement of symptoms.

Best wishes!

[IFwczs in reply to rjoneslaw]

I had no side effects to any of them (but some issues with steroids). I think it has helped with energy, but not gait or balance.

[jsb0410 in reply to IFwczs]

I am happy that it has helped with some of your symptoms!

[IFwczs in reply to jsb0410]

My main issues are gait and balance. What about you?

[jsb0410 in reply to IFwczs]

My main issue was fatigue and spasticity since this first started. This year the balance/cognitive issues really picked up. Do you have RRMS?

[IFwczs in reply to jsb0410]

80% of us have fatigue. My neuro diagnosed me with RRMS five years ago, but I definitely have the progressive kind and told him when he asked me what I thought a couple of months ago. What about you?

[jsb0410 in reply to IFwczs]

Hi I was diagnosed in 2012 with RRMS and then I switched doctors and I was incorrectly diagnosed with Myasthenia Gravis in 2014.

Finally I was rediagnosed last year by my new neuro who is a MS specialist.

Have your symptoms continued to progress since starting treatment?

[IFwczs in reply to jsb0410]

My biggest issue is not being able to walk without assistance anymore. I wasn't able to when I started, and I still can't. But my neuro said Ocrevus does not reverse existing symptoms, even though some people have reported improvements. I think Ocrevus is more for progressive MS. I personally overheard a patient in the infusion room who said she had a relapse while on Ocrevus and was taken off it.

[jsb0410 in reply to IFwczs]

I’m sorry to hear that you need assistance walking. I use a walker but it is for balance/fatigue as I have fallen a few times. It is taking some getting used to honestly.

Do you take meds to help with gait and if so are they helpful?

My neurologist can be fairly confusing sometimes. When I went in the other week he asked if I had any improvement in my symptoms and when I said “no” he said “well that’s good you are back to baseline” His ARNP has been more optimistic but I wasn’t holding out much hope my symptoms would improve.

I hope that I can stay on it as I can’t take injectables due to blood thinner and a few others due to cardiac issues. I am hopeful it goes well!

[IFwczs in reply to jsb0410]

I need assistance walking for balance, fatigue and foot drop. I have a rollator at home and need escort or do wall walking otherwise. I take Ampyra for gait, and it's been extremely helpful. What has been really more helpful than anything with MS is the candida diet from that book I posted about two days ago, "Healing Multiple Sclerosis.". Have you seen that post?

[jsb0410 in reply to IFwczs]

I’m glad that the Ampyra has been helpful to you! I’m not familiar with that book. I will look for your post. I see a functional medicine physician and she had recommended that I not eat gluten or dairy but it is very hard.

How have you noticed that the diet has helped your symptoms?

[IFwczs in reply to jsb0410]

jsb0410, this is my post in case you haven't found it yet - healthunlocked.com/mymsaa/p...

Yes, not eating gluten, dairy and sugar was incredibly hard for me till I read this book. (My Integrative Medicine doctors told me not to eat it, but I have found some article that says you shouldn't be gluten-free unless you have celiac disease, so I used that as an excuse.). I have been on this diet for 3 days and I definitely have more energy. No other changes in symptoms. I don't think berries are good for me (they have been okayed by the book, but I haven't taken the antifungal medication yet). This book is also available for Kindle, you should really read it.

[jsb0410 in reply to IFwczs]

Thank you so much! I really appreciate it very much! I met with my functional medicine physician yesterday and she really emphasized how important it is to go gluten free for inflammation

I appreciate all of your help and sharing your experiences!

[IFwczs in reply to jsb0410]

Keep us posted on your progress!

[jsb0410 in reply to IFwczs]

Thank you for your help! I’m glad that you haven’t had any issues. I seem to have cardiac issues with pretty much every “serious” med

I am encouraged that you have done well. Thank you so much

[Linda3579]

Hi jsb,

I had my 5th infusion last week. My bp goes down some during my infusion. They always watch it carefully as I tend to have low bp anyway. I always have a headache for a few days afterward. I haven’t notice any big improvements but have not gotten any worse the last 3 years. I consider that to be a very good thing. I have a doctor who is also on Ocrevus. She is seeing some improvements.

Wishing you the best,

Linda

[jsb0410 in reply to Linda3579]

Hi thank you so much for your response. I’m glad that Ocrevus has helped you in maintaining these past few weeks. That is definitely encouraging news!

Thank you for sharing your experiences!

[Wizardsmom]

I have been on Ocrevus for a year and have had normal blood pressure. Could it be that the cardiac drugs need to be adjusted? My daughter has tachycardia and sometimes needs adjustments to her meds due to low BP.

[jsb0410 in reply to Wizardsmom]

Hi thanks for your response yes hopefully that’s all that it is. I am going to put in another call to the cardiologist/electrophysiologist to see what he thinks. I’m sorry that your daughter is going through that. Sometimes the meds for tachycardia and the hypotension have the opposite effects so I know that it can be difficult.

Thank you!

[pamgarner]

Sorry this has happened, everyone experience is different, I do have afib,it didn't seem to bother me,but I can't take gabapentin so again,patient heal thyself. Sometimes it is a big guessing game but don't fool around when it's your heart, we only get one.hope you get it worked out

[jsb0410 in reply to pamgarner]

Thank you so much I appreciate it! These meds can be scary and specialists normally do not speak to each other so it can leave the patient as their “own doctor” it can be discouraging but as you said we do need to discover what works for each of us as individuals