Approvals for Medicine

[JennS77]

Anyone taking Ocrevus? How long did it take for your first infusion to be approved? My son was diagnosed on Dec 20th and we are still waiting for approvals. He has lost most of the vision in his right eye and the fatigue is getting the better of him. At diagnosis he had over 40 lesions between his brain and spine, and I have noticed at least two flare ups since his hospital stay in December. The waiting is so frustrating.

[Royjr]

Stay strong for your son. I know how you feel about waiting for insurance approval. Make you wonder why the h@&ll they being so cheap. You pay and have insurance to use. Stay strong and everything will work out 🙏🏽🙏🏽

[Iona60]

It didn't take me long at all. The key was finding an infusion center that wasn't busy. I had an appt with the infusion center Dr within 10 days. I could have started the med right away, but I had to wait for a 6 week wash out of the prior med.

[Raingrrl]

Hi @JennS77! I understand your frustration.

I think each situation is different depending on the insurance carrier and the patient. My insurance turned me down the first time. I've had the same insurance for many years and was diagnosed in 1999. The reasons they turned me down were false and seemed as if they never even bothered to look at my records. So I had to get my neuro to appeal. Once he appealed, they approved.

Has your son been treated for his symptoms while waiting for the approval? The DMT's, like Ocrevus, function to prevent progression when they work. They don't repair previous damage. I hope your son is being treated by a neurologist that specializes in M.S. Other doctors don't keep up with the latest in M.S. treatment nor do they seem to have a solid understanding of M.S. (My opinion is based on my own experiences and those of others on this board.)

[Hidden in reply to Raingrrl]

@raingrrl, thanks for your direct and clear words about DMT's...and Neuro's. I've a neurologist who is highly respected by his patients and peers, yet, we are continents apart when attempting to decide what are my specific difficulties...and the subsequent action(s) to take. Physical Therapists also have confusion about assisting / teaching MS patients. Yes, their courses of study touch on the "special" requirements of MS patients. However, I've not been able to find an MS-trained Physical Therapist. So, I continue to exercise my way. Last thing - you really made a point by noting "Other doctors...don't keep up with...solid understanding of MS". It appears that many, on this site, have much more knowledge and insight about the disease / disorder by which we are affected. A peaceful day to all.

[Raingrrl in reply to Hidden]

Hi Hidden ... I have been to a couple of different PT’s. None had significant knowledge of M.S. or specialized training. I have only gone for knee related issues and balance. It’s helped sort of. The knee issues are because I’ve had several bad falls all landing on my right knee. The balance issues are from M.S. and the P.T. didn’t really help. I’ve done just as well if not better on my own.

[JennS77 in reply to Raingrrl]

His Neuro does specialize in MS and gave him a three day steroid while he was in the hospital in December, but no other medicines since then. He has him going to physical therapy specializing in MS patients, but it doesn't seem to help him at all.

[Raingrrl in reply to JennS77]

Seems that your son’s neuro isn’t doing everything he can to help so that’s why I asked if he specialized in M.S.

There are a few different medications that can help with M.S. fatigue. It’s trial and error though because there doesn’t seem to be one that works for everyone. Makes sense when you consider that everyone’s experience of M.S. is different. There are multiple discussions in this forum on the topic of fatigue. You can find them via the search function.

P.T. is not a remedy for either the fatigue or vision problems. Maybe it was prescribed for other symptoms.

[Gma06]

I have been waiting for 2 months with no word.

[Juleigh21]

I’m so sorry that you’re all going through this nightmare with the insurance company! I think if it were me, I’d be calling the doc office and the insurance company every day inquiring on the status of approval. Your son needs a DMT pronto.

[JennS77 in reply to Juleigh21]

We have been calling, emailing, going to office. Its been a chore.

[greaterexp]

I agree with those who suggest calling insurance companies directly to ask what the hold up it all about. We do have to be our own advocates as patients and caregivers, unfortunately. I played the waiting game for awhile, but had to make phone calls myself before I could get started on a DMT (Copaxone).

I'll be praying for a quick resolution. Keep us posted.

[Fancy1959]

JennS77, it's Fancy1959. I too am on Ocrevus. It was approved by the government for use in I believe April of 2016 and it took me until mid September to get my first half dose. The way my doctor explained it is that each large neurologist office gets only so many spots to fill when a new drug becomes available so that the infusion centers aren't over run. I agree with you that waiting is the worst. Stay strong for your son and understand that we are here if you need to talk to anyone. We are simply a post away.