Aubagio

[Neworleanslady]

I wrote a while back that my dr. switched my prescription to aubagio and you all wrote back with some great information. Just reporting-i just took my 1st aubagio pill about an hour ago! I don’t feel any different. Yet. It took what i calculated as a total of 9 HOURS on the phone holding on with insurance, co pay assistance plan, specialty pharmacy, all 3 together, and being switched among three different pharmacies before i could finally get the med. Good thing I’m aware enough to be my own advocate! (Right now at least)

I did survive a mardi gras parade yesterday without falling!

[Doubled51]

Congratulations on surviving Marci grad parade without falling. I fell coming out of my Ortho drs office a couple of weeks ago. They have strict orders now that they wheel chair me out now.😜😜.

Donnie

[Neworleanslady in reply to Doubled51]

Never did i think staying on my feet during Mardi Gras would be something for me to be excited about! My husband mentioned how many more throws we’d have gotten if id been in a wheelchair. Wheres the challenge there?! Haha

[Doubled51 in reply to Neworleanslady]

We have to use anything we can from this crazy disease.😇😇.

Donnie

[TexasLawman]

Woo hoo!!

[TexasLawman]

I couldn’t do that pre-MS!! Must have been the booze!!

[Neworleanslady in reply to TexasLawman]

Ah the good ole days

[greaterexp]

Congratulations on getting through all the nonsense to get you med!

[Violonchelo]

So you are taking now Aubagio and it works well?

Do you feel diferent?

Maybe the Resonance Magnrtic will be better?

Have you second effects?

I have Rebif 44

[Neworleanslady in reply to Violonchelo]

I took my first dose of aubagio yesterday. I feel different in that i have a little more confidence, although idk why. Still not walking great but I’m giving it some time

[Violonchelo in reply to Neworleanslady]

So Maybe all the persons have a solution with Aubagio for our MS?

Maybe MS has solution totally with Aubagio?

Maybe all the people can use Aubagio?

[Neworleanslady in reply to Violonchelo]

Everyone responds to each medication in their own way but I’m sure hoping this will work great for me! I’m sure it’s worth a try if whatever is being used isnt working, but of course that is up to a doctor.

[Neworleanslady in reply to Violonchelo]

I don’t believe there’s a “solution” for MS only meds that decrease symptoms and which works best for each person

[pamgarner]

I think the pain insurance companies make us go through,is their plot to get rid of us one way or another,we will show them ,we are not going anywhere!

[Neworleanslady in reply to pamgarner]

I actually would like to write a complaint letter but im not sure who to send it to! Yes it took awhile for insurance approval, but then even after insurance approval the pharmacies kept switching me and asking for the same info over and over and my dr had to keep writing prescriptions!

[bxrmom in reply to Neworleanslady]

Maybe write a letter to everyone you dealt with? It could have pretty much the same info, just addressed to someone different.

[Neworleanslady in reply to bxrmom]

Good thought

[pamgarner in reply to Neworleanslady]

my sister works in a cancer center and she told me the gals that get insurance approval get so angry,they said the dr will prescribe a medicine because the patient needs it and insurance says no,sounds alot like ms.patients.urgghh!

[Neworleanslady in reply to pamgarner]

Gals that get insurance approval?

[pamgarner in reply to Neworleanslady]

yes,they say it aggravates them that the dr prescribes the meds. and insurance turns them down alot for patients

[Neworleanslady in reply to pamgarner]

Like we don’t pay enough for insurance!!

[Fancy1959]

Great post. You just proved that tenacity and willpower can pay off when you don't give up on something that you know is in your best interest! Always remember that the squeaky wheel gets greased! So here's to all of us in this chat room who aren't afraid to squeak occasionally to get what they need! Squeak loud and squeak long when it's needed. That's the call of a true warrior! Fancy.

[Neworleanslady in reply to Fancy1959]

Thanks. Yesterday I got a letter from Sanofi that has a large survey in it about my feelings and symptoms. I called them to see who they were with and they said they are the manufacturer of aubagio. Maybe I should complain to them about the poor service their vendors are giving the customer (The companies that they use to do the customer sales at least)

[mrsmike9]

Be prepared for Januarys. Every January you have to jump through the hoops again. What I did last year really served me well this year. Every time I was called to be told it was time to refill, I always told them when they asked that I wasn't sure how many I had left. The beginning of this year when I was trying to get the specialty pharmacy and and the folks who help pay all set (this year it took me into the 3rd week of February!) I had enough sent to me from last year to tide me over. An FYI, your neuro has samples if you get really stuck. I wish I'd known that every January it starts again...

[Neworleanslady in reply to mrsmike9]

Thank you for that i was wondering. They did say repeatedly that it was the beginning of the year and everyone was trying to get set up with new deductibles and all and that’s why things were so lengthy and disorganized (didn’t use those exact terms)

[mrsmike9 in reply to Neworleanslady]

This year for me was particularly bad. What happened is last year the pharmacy changed the packaging of the pills. They used to be flat packed with 28 pills. Nearing the end of the year they changed to bottles with 30 pills. The stupid pharmacy gave the old price (28 pills) to the agency that helps. Anything that costs over $5000 has to go through an approval process. When it was approved the pharmacy realized someone screwed up and gave the wrong amount. So it had to go through the approval process again! In the past I normally have my meds by about the 3rd week in January. This year it was a full month later! Frustrating but I was prepared for the worst (which happened).

[Neworleanslady in reply to mrsmike9]

Omg whatta royal pain

[mrsmike9 in reply to Neworleanslady]

It should be back to the "normal" pain next year. I don't think they plan to switch the sizes of their containers again!

[cookie12669]

Are you loosing your hair? Any unset stomachs? Don't get me wrong, I take aubagio. I recently had back surgery and have had some issues from that or the MS/aubagio. Amm struggling now.

[Neworleanslady in reply to cookie12669]

Are you taking any additional meds from the surgery? How long have you taken aubagio? How is it working for you? Sid you have any side effects before your surgery?

[Neworleanslady]

I just started the aubagio. I sure hope there are no side effects. Nothing yet. Only have taken for 3 days.

[LeannEHl]

Aubagio was a NIGHTMARE for me!!! It caused endless spurting diarrhea, so I stopped taking it after I called my neuro's nurse practitioner. I stated that I WOULD NOT continue to take a DMD if this was their current drug of choice.

Not surprisingly, I got a phone call within the hour. There was a new med available, called Mayzent. Research told me that this one was a SUBSET of the one I had recently been taken off of due to having been on it since it was first intoduced (Gilenya). Mayzent only goes after 2 of the 'bugs', whereas Gilenya went after 4.

Okay, lets give that one a go. I've been on Mayzent now for 6 weeks, and all is well, except I'm no longer considered to be R&R, I am now Secondary Progressive.

I saw my eye doctor yesterday, and he informed me that the New England Journal of Medicine has just come out AGAINST my long standing blood pressure med, LISINOPRIL. Instead, the old favorite, HYDROCHLORITHIAZIDE, is much less of a risk, when faced with COVID19's risk.

Now, why am I hearing this from my eye doctor, and none of my other wardrobe of doctors?