Anyone with inactive SPMS taking Ocrevus?
 

Ocrevus has been OK'd for SPMS IF it's still "active"--new or enhancing lesions on the MRI makes it active.

Back when the ABCR drugs were pretty much what we had to choose from, none of them was specified as being for SPMS though Betaseron may have been approved (if I recall) for some people, and even so, the doctors were prescribing the ABCR drugs for people with SPMS on the offchance that they just might help. I know because two different neuros prescribed them for me even though I had no new lesions and no enhancing ones and had had SPMS for many years.

So are the doctors prescribing Ocrevus for SPMS that isn't considered active? I've been wondering.

Hi Agate,

I think mine is SPMS now but the doctor hasn't labeled it such. I haven't had new or active lesions in years, at least not in the brain. He hasn't done a spinal MRI and I've been with him for over six years.

I started Ocrevus last July. In January I had my first full infusion. My legs are getting weaker and I have a lot of pain from my lower lumbar through my thighs.

I figure it can't hurt? But he has mentioned stopping treatment at some point because of my age.

If your legs are getting weaker since you began the Ocrevus, I wonder if it's the drug for you? And yet without it maybe you've had had worse problems?

The whole issue is such a gamble, and you feel you ought to be doing whatever you can to halt the MS progression. At least that's the way I felt.

But I chickened out finally. I'm partial to drugs that have stood the test of time, and I'm not sure that any of the MS drugs have been around long enough to know what their effects are over the long term.

It's too bad that your legs are getting weaker and you're having pain. I have those problems too. Does physical therapy help at all?

I'm fairly sure it has helped me.

Seems as if your neuro would want a spinal MRI under the circumstances. Maybe that was overlooked? I've noticed that doctors forget what's been done and not done. Many doctors seem seriously overloaded with cases.

I was getting worse before I started Ocrevus. My neuro knew about the pain and weakness but the pain had been attributed to back problems. I made an appointment with a neurosurgeon about a month ago and he said there is nothing seriously wrong other than normal aging. He said there is no surgical fix for my pain.

I did have a minor herniated disc at L-5 but that has improved with chiropractor treatment for five months. The medicines I take to control my pain probably make the weakness progress too. I take baclofen and gabapentin 3x a day and tramadol in the evening on bad days.

I'm thinking about getting authorized for medical cannabis to see if that will work better for the pain.

I belong to a Facebook group for Ocrevus patients and there are many taking it. There are quite a few in their 60s and 70s too.

The neurosurgeon I saw suggested a MRI of my thoracic spine. He's not a neurologist though so I don't put a lot of stock in that. I might suggest it to the neuro next month though. If I do have spinal lesions there is nothing more to be done anyway. I can't tolerate high dose steroids, and I'm already taking Ocrevus. There might be a better treatment for those with spinal lesions though so I suppose it can't hurt.

Physical therapy definitely helps me but it's a lot of work. Do you still get it? Also, the older treatments aren't as effective. That's why I chose Ocrevus. I tried Aubagio and Gilenya and they tore up my digestive tract.

What I'm seeing among the users online is initial hair loss and frequent upper respiratory bugs because Ocrevus depletes part of your B cells and it can lower your immunity. It has only given me minor side effect so far.

My neuro says she likes to have 3 MRIs--brain, cervical and thoracic, I think were the ones she mentioned.

I haven't had these done yet though I've been with this neuro a couple of years now. If I were interested in one of the MS therapies, I'd definitely have the MRIs but as of now I'm postponing them indefinitely--mainly just because getting MRIs isn't very entertaining, and getting there and back can be tiring. But I can see why you'd want to get the spinal MRI.