I8Steroids..

[FightingMyEvilTwin]

If steroids are bad for treating flare-ups, what about the steroids used in ocrevus? I've had 9 ocrevus infusions...what do I use for a relapse or flare-up? My neuro is not on the steroid bandwagon to stop a relapse because of the damage to bones.. this is a lose-lose situation.

[Frances_B]

Dose levels are very different in each situation so impacts/ side effects are also going to be different.

The recommended dose for Ocrevus infusions is a single dose of 100mg (and can be less if patient has a clear history of no reactions to the infusions.

Variations in doses and duration of treatment for relapses will be up to the professional opinion of the treating doctor. Guidelines indicate that for relapses treatment the dosing can be 500mg a day with tablets for five days i.e. a total of 2,500mg - or 25 times the amount used for an Ocrevus infusion.

For steroids given by infusion it can be 1,000mg per day for between three to five days so a total of between 3,000mg and 5,000mg i.e. between 30 and 50 times more than the dose given for an Ocrevus infusion.

mstrust.org.uk/a-z/steroids...

The bone damage medical and clinical rationale for not giving steroids for relapses unless there are good reasons to do so is based on information going back many years. It has also been shown in various studies over the years that steroids may reduce the duration of a relapse but they make no difference to the amount of any disability which may come from that relapse. So, usage for relapses tends to be more for those where there are major issues such as loss of vision, or unable to walk at all, and so on.

These are big dose differences between the two situations, so best not to try and create a cyclone in a teacup over it - if you've been given the standard recommended 100mg amount with your 9 Ocrevus infusions then the total you've been given is around 35% of the lowest guideline amount given for just a single relapse.

To put it another way - if Ocrevus successfully prevents you having any relapses, then the number of infusions you could have before you even reached the same oral steroids dose as that used for a single relapse would be twelve and a half years of Ocrveus infusions (2 infusions a year divided into 2,500mg of steroids).

[CatsandCars]

You may know that the Ocrevus steroids are to prevent an allergic reaction. My old neuro wasn't big on steroids either, although he wasn't nice enough to explain why, I'm guessing it was osteoporosis risk. You can ask your doctor, but I suspect that if you had a horrible relapse and couldn't use your hand, or couldn't walk, he would probably break out the steroids. According to the NMSS websites guide to treating MS, steroids help you get better faster, but they don't change the course of the disease, so it's not technically wrong not to use steroids. Now that I've heard how often people with MS fall when they get older (if not sooner), I wish I hadn't had so many steroids over the years. I just didn't know what it could potentially cost me down the road, because nobody told me. But frequent falling and brittle bones don't mix and can lead to weeks of being stuck in a rehab facility. I do sympathize, because relapses can be horrible and scary, and your life has to be put on hold. You may have children to take care of, or need to work instead of sitting around for weeks or month hoping a relapse will go away. I understand your doctor's reasoning, but it would be nice to explain the risks and then let you decide!

[Helpmeup in reply to CatsandCars]

You are so right! As I have mentioned in other posts, I was given steroids 4 or 5 times over the years at very high doses of 1,000 mg day over five days followed by two weeks of tapering doses. Not one doctor ever explained the potential long term effects or even explained that as you point out, they will shorten relapse recovery time, but won't change the course of the disease. If I had known at the time, perhaps I might have made another choice, perhaps I would have taken them anyway, but no choice was offered to me. By the time I was in my early fifties, I had severe osteoporosis! Having balance issues and osteoporosis is a pretty scary combination!

[kdali]

Welcome! The low steroid dose used with infusions is to prevent reactions. It's your neuro's job to sort out whether new or worsening symptoms that you report are MS related (and not another problem needing to be treated instead) and if it warrants steroid use. There's a window of time for using steroids effectively in a new brain damage scenario. Some limit steroids to loss of function only (bowel/bladder, vision, limbs).

Having bones is a win!

[Cwright170994]

I was told by my MS nurses that steroids are an immunosuppressant themselves. I was in hospital, having regular steroid infusions when I was in there for 27 days. I also got a call from my MS nurse telling me I was going on ocrevus, because the neurologist had enough evidence to get me on it. I was originally meant to start 2 weeks after coming home, but because I was having to titrate off them, I wasn't able to start. Instead, I was able to start a further 2 weeks after.

So, steroids and ocrevus are a double whammy hit on your immune system. Given what was happening during my 1st dose, I commend the nurses for double checking my risk.

To be fair, 2 years ago, my husband came down with COVID a couple of weeks after my ocrevus infusion. He was scared of passing it onto me, but I told him I was OK. I had my covid vax's, just like he did, and I caught it a few months before I started ocrevus.

[Scout4x4]

Yes you are receiving a steroid but it is a much smaller dose in comparison to flare up dosage.Doctors try not to exceed 5 doses of any steroid in a years period based on MS standards.

I have had cancer in the past and I needed steroids every day for 35 days with two additional strong doses. It didn't do anything to me re MS. But it was crucial to my cancer treatment.

[FightingMyEvilTwin in reply to Scout4x4]

Thank you.

[Neworleanslady]

thank you all for all of that information!