Can't get my Rebif!! - Warning this is a rant!!

[bubbles_04]

Hi All,

It's me again with a rant. I'm just feeling a little powerless right now and I want to rant it out. Also see if I'm the only one whos ever had this issue. I ran out of my rebif last week. I have been trying to get it delivered for the past two weeks. They (accredo) say whenever it goes to get paid from my insurance (healthnet) it gets rejected. Needed a new PA! However my current PA didn't run out till oct 2013. My Dr got involved and got a new PA and called it in. They did that two weeks ago. Both my doctor and I and now mslifelines have been calling accredo to figure it out. I have wasted so many hours now dealing with this!!! Last I heard from mslifelines that everything is sorted and accredo will call this week to arrange delivery. They need a day or two to process it. By the time I get it I would of missed two weeks of shots I'm sure. Mslifelines slogan is stay on meds. I'm really trying to stay on it!

Oh well I have had two attacks since being on rebif so maybe its not working for me anyway. I'm going to have an MRI done soon and if its not looking good I'll need to change meds again anyway. Maybe I'll just quit rebif now and have a baby, I hear being pregnant helps MS :)

Sorry to be a downer, its been a really long painful two weeks of hours of wasted time...... :(

[Corriel]

Good grief! What a hassle and apparently for no good reason. I don't blame you for being frustrated.

I take Rebif too and fingers crossed have had no issues with getting it.

I hope it arrives soon.

You are not being a downer at all, this is a major deal.

Take care,
Corrie

[cubbiesfan918]

Oh Bubbles. Bless your heart. I'm not going thru drama but I am switching from Copaxone to Tecfidera. I hope that if you are considering a change you are able to find something that creates less drama for you........

As for the baby comment - I had my worst flare 10 weeks pregnant with ON and vertigo.  On top of already having morning sickness, being blind and unbalanced was for the birds :) But the payoff has been a beautiful, healthy little girl!

Either way, I wish you the best of luck and a prompt resolve to your problems. I won't be on a DMD for about a month and one of my sweet posters said that being without therapy a short time shouldn't be harmful, I'm crossing my fingers this applies to you as well.

Best Wishes!
Lizzie

[TLC_31]

Between ourselves (especially us often-forgetful MS patients), our doctors, our insurance companies, and our pharmacies, there’s a lot of room for human error. On two occasions (in 9.5 years of treatment) I haven’t had any medicine to use on injection day, and of course it doesn’t ship on weekends (even though this is the 21st Century) so I ended up taking it four or five days late each time. I staggered my following injections to get back on schedule.

No, that’s not the same as two or three weeks. But like one of Lizzie’s “sweet posters” once said, being without your shots for a short time like that shouldn’t be harmful. You don’t want to get in a habit of skipping, but if there’s nothing you can do about it, please try not to stress. And once you do get your Rebif, stay on it until you get your MRI and consult with your doctor.

Aside from my late shipments, I once stopped Gilenya after a 19-day trial and waited four or five more weeks to restart Avonex. I had intense side effects for a week or two, much like when I first started Avonex long ago, but otherwise there was no problem.

[cubbiesfan918]

I do believe it was you that told me it wouldn't be harmful, you have a lot of great info!

[bubbles_04]

Thanks guys, you made me feel better!

I'm worried that my MRI will show activity due to the break but I asked my doctor and ill see what he says. I scheduled it for next Tuesday. I really hope the MRI is good news......

[Lulu54]

All of these drugs give our body protection that lasts after we have discontinued the drug - so in a case such as yours, I would not be at all concerned about the ill effect for your MS.  If it goes too long, you might find your reaction with the flu like symptoms is worse for a while again.

Any changes in your MRI most probably won't be from being off the Rebif for the short bit.  I had to smile at your pregnancy comment - how many babies are you willing to have to keep feeling ok? LOL

good luck with getting this insurance mess resolved.
Laura

[Cann1980]

Oh this *****! As if we don't deal with enough now all this for u? Hope everything smooths out!

As for the baby part... My pregnancies were not ms less ... They were horrible! If they come up with a drug to mimic the pregnancy theory no way would I take it!!  Lol

[Sailorsong]

I had to chuckle when I read your comment about pregnancy drug for MS.

Just yesterday I was reading on another forum that there is a trail going on to study a pregnancy hormone type of therapy for MS.

Dennis

[byyygrace]

Oh no! You too! Before I read this I posted about Express scripts. I had the same nightmare with Accredo(Express Scripts specialty pharmacy). It took me 7 1/2 weeks to get my Aubagio.

I too spent hours and hours on the phone, on hold, passed from one incompetent person to another, with supervisors who assured me my medicine would be express shipped(4 to 5 days) and then on day 4 I would get an email or a message with a recording saying they needed more info to ship my order. I lost count of how many times I verified my shipping address!

I was so frustrated that I could not deal with it. I called my company's benefits coordinator and after about a week she called me back and told me that she had talked to several people and it was all taken care of. It wasn't. I didn't have the time, patience, or energy to call them again without losing my salvation....I did not return any more calls. I couldn't. The drug arrived-finally. They've been calling and leaving messages about my refill for a week(they would only give me a 28 day supply) and I haven't returned their call. Makes me wonder if any drug is worth that much hassle.

it absolutely makes you feel powerless and defeated. I'm so sorry for what you're going through.

Colin

[bubbles_04]

Laura - in answer to your question, As many as it takes ;P

cubbiesfan and cann1980 - you are bumming me out about the pregnancy thing... there I was thinking I was going to get a 9 month MS break! Haha

byyygrace - :(:(:( So sorry to hear you suffered with this as well. The latest I have heard it is all resolved and accredo will be calling in the next few days to arrange delivery. I feel like if I call them one more time I may just reach down the phone and smack em!!

I hate that recording!! I just HATE it!. you get told your drug will be delivered and them the DAY before you get that recording. Then you call them and nothing can be fixed. You will not be getting your drug the next day. It's BS.

I think I've wasted upwards of 10 hours on this and my Dr also. At this point, both the Dr and I have given up on calling them. It makes no difference, I'll let Mslifelines deal with this. I'll call them again on friday, if nothing from accredo.

My MRI is now booked for Tuesday. I know if its looking bad my Dr will call me in early and thats when I'll work on the baby plan. HAHAHA.... Maybe I just want a baby :)

Whats funny after a week off the drug I'm having a few headaches.... maybe unrelated to the drug and more to the "getting the drug" stress.

[cubbiesfan918]

You definitely have baby fever! I will say that all of the cliches are true! Good luck with whichever route you decide and keep me posted on baby status :)

Lizzie!

[beema36]

I just went through the same thing with the accredo and rebif. Went over 2 weeks without it. Nobody cared. MSLifelines got involved but they also messed up which slowed it down too. I am wondering if its worth it. Never had this problem when I was allowed to use pharmacy here to get it. Hating the mail order med thing! Hope you get it soon!!

[bubbles_04]

Cubbiesfan, I will do :)

Beama, that really ***** and makes me hate accredo more!! I'm not really sure what the issue is with these big pharma companies.

It would seem they are billing the wrong insurance, I told them that, my Dr told them that and now MSlifelines are telling them that.

MSlifelines called me today to say that accredo should call me.... They didn't....

[beema36]

Bubbles that's exactly what I went through! I am still so disgusted with them. From what I can tell I didn't have any lasting effects from the lapse in treatment so try not to worry too much about that.

[bubbles_04]

They say saturday it will be delivered. I'll let you know if it comes :)

[Corriel]

Fingers crossed!

[Lulu54]

Saturday's delivery should be exciting - I hope you re not disappointed.

[bubbles_04]

Hi All,

It did not come, said it didn't make the shipping cut off.... So they say tomorrow now.....

We will see

[PastorDan]

Zheesh!

[Corriel]

Sigh, this is becoming more drama than my fave soap opera!

I sincerely hope that it will arrive tomorow.

[bubbles_04]

Just called and they said its not coming today.... Need prior Auth... They have had it for 3 weeks....

I'm about to throw the toys out the pram over this!!!

What the H*** are they doing over there???

[Corriel]

Seriously? This is beyond absurd at this point. Do they need signatures in blood or what? I would be more than ready to pitch a fit on your behalf. Grrrrr. :-)

[cubbiesfan918]

Poor Bubbles :(

When I was Dx'd my Neuro's office contacted my healthcare provider to get emergency authorizations for my IVSM and DMD. Perhaps you could utilize this route?

I am really sorry you are experiencing this.

XO
Lizzie

[bubbles_04]

Thanks Lizzie, they did, made no difference.

My Hubby is now getting annoyed and told me to start getting supervisors to talk to me and getting numbers/names etc.... I have but maybe im not pushing enough... its really silly!!

:(:(:(