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a long whine

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Ulcerative Colitis
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/4/2022 5:29 AM (GMT -8)
Good morning all. Well, my gastro doc prescribed Rinvoq after Entyvio failed. It was working super great! Insurance denied it. Doc prescribed Zeposia. My heart doc advised him to not put me on it. Doc appealed request for Rinvoq and still waiting after two weeks. So now...I'm beginning to get symptoms of a flare. Began Mesalamine and am just pretty much tired of messing with this 'crap' after all these years. I've read a lot about the various surgeries but it seems that even after removal of most of the colon, you can still have problems with urgency etc. Just getting to my 'wits end' and really don't know where to turn. The drug companies all say they have patient assistant programs, but when I apply, I'm turned down because I have Medicare, Blue Cross and Tricare. Seems that if my primary denies it, they all do. I'm about to give up, stay home, and live on the almighty thunder mug forever more! Thank you guys for your patience. Just had to vent a bit. Be safe all and stay well. God bless you all
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5854
Posted 12/4/2022 8:31 AM (GMT -8)
Sorry to read that you're experiencing all these hassles over med, Geezer. Hopefully your doc's appeal for Rinvoq will get approval ASAP, but with holiday season now upon us speed-in-processing likely will be dicey. In the meantime try to stay calm and avoid known irritants to diet, rest as much as possible-- you know those familiar ropes to fight off flares. *** The whole Rx situation in U.S. seems to be problematic; I even have a 60-ish neighbor with PH.D. in psychology who has a very demanding workload treating acutely-ill kids, who lately is having trouble getting a personal longterm Rx refilled by Walgreen's! (The local pharmacy keeps reporting that warehouses are either at low supply or running out of the med entirely.) *** Wishing you good luck with the Rinvoq issue!!!!! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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quincy
Elite Member
Joined : May 2003
Posts : 33538
Posted 12/4/2022 1:20 PM (GMT -8)
How pathetic it is when companies put their noses into poo-pooing the appropriate meds a specialist requests for a patient 😠 I hope it does a turnaround for you.

What do you mean by most of the colon removed? I've heard of patients having issues with urgency and inflammation when the rectum is spared. However, I don't know the specifics about those surgeries.

Whine and rant away...let us know the outcome.
q
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2530
Posted 12/4/2022 1:26 PM (GMT -8)
I hate being at the mercy of insurance. I am still on employer insurance. For the past 6 years we always had Blue Cross Blue Shield, but they are switching to United Healthcare Jan 1. Not looking forward to having to get preauthorization for remicade with a new company. I have my fingers crossed that they won't change anything.

Hopefully, they will approve Rinvoq soon. This disease is hard enough to deal with without the insurance BS. It's enough to stress anyone to the max. Hang in there.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1789
Posted 12/4/2022 1:28 PM (GMT -8)
Surgery saved me from the constant anxiety,doom that comes with UC
I was tired of being sick and tired
Have had no side effects from the 3 surgeries
Have about 2-4 bms day. Very simple and easy
Like Keith says even with his surgeries/complications his life is better now then when he had UC
God bless and be well
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/4/2022 1:55 PM (GMT -8)
Champ and everyone....Thank you. I understand that insurance companies don't want to pay out for old people; especially when the drug companies charge so much for their magic drugs. I just wish our doctors who prescribe drugs for us wouldn't have to jump through so many hoops to get their prescriptions approved by some group of insurance groupies. I'm fortunate enough that my gastro doctor is a super great doctor and good human being. I dread the day that he retires! Anyway....the doctor's staff are trying to deal with the insurance and I'm trying to deal with the drug company. Time shall tell. I really hate it for ALL of us, that there ARE drugs that can help us, but we have to beg everyone, to have them paid for. Taxpayers pay trillions of dollars to send bombs to kill humans in foreign lands. Wouldn't you think our tax dollars would pay for everyone to have health we could live with? Sorry...just feeling a bit bitter and down at the moment. sheesh One would think I'd be used to this by now. I'm and OLD guy now...74 in a few days; so for me it's just the 'norm' of being sick. I do hate it for the younger folks who have to deal with this horrible illness now and in the future. The people in this forum have been so kind and helpful over the years; just THANK you ALL and keep up the fight.
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GrittyHope
Regular Member
Joined : Mar 2022
Posts : 91
Posted 12/4/2022 2:13 PM (GMT -8)
Geezer, I'm just chiming in to say how ANGRY it makes me to see people need access to medication, knowing it can help, and facing all these bureaucratic roadblocks from companies trying to make as much profit as possible. Insurance is so necessary and so backwards in whose wellbeing it prioritizes (stockholders).

Rooting for you to get approval and get the care you need (and deserve).
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Lka58
Regular Member
Joined : Nov 2018
Posts : 60
Posted 12/4/2022 4:40 PM (GMT -8)
Geezer and everyone I have a question. Maybe a dumb question.
From reading other posts I got under impression that Medicare plus supplemental would pay for meds your doc prescribed without requiring try other meds first.
I am not on biological and will be eligible for Medicare in 2023. So… I am trying to learn.
Don’t want to hijack this thread but I am struggling and getting mentally ready for higher meds, although it’s very scary.
Isn’t it Medicare plus supplemental is the best choice to get the meds you need?
Reading your story makes me think I am missing something.
Could someone explain how it works…
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Lka58
Regular Member
Joined : Nov 2018
Posts : 60
Posted 12/4/2022 4:47 PM (GMT -8)
And congratulations for your coming birthday, Geezer! Wishing you the best!!!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19351
Posted 12/4/2022 5:17 PM (GMT -8)
Geezernow, I do hope your dr's office get the approval on the appeal. How long ago was the appeal done, do you know by chance? Keep us posted, totally understand where you are coming from.

Happy Birthday early.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/4/2022 7:58 PM (GMT -8)
Lka...thank you. LOL As for insurance...I'm totally dumb! Because I have BlueCross as my primary, the others seem to go by their decision. Normally, I have very small, if any, co-pays. I do not have the part c or d. All I can say is, when you choose your insurance ask your doctors and hospital which they deal with. Stray, it's been about two weeks now. Holiday season and such. You guys stay safe and enjoy the holidays!!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1640
Posted 12/4/2022 8:14 PM (GMT -8)
Geezer … did you try calling rinvoq and see if they have a patient assistance program for people who do not qualify for copay programs? It’s well worth the time and effort. I ask because I am on Medicare too but I get my Aimovig (migraine med) injections from the Amgen patient assistance program (different from the copay program which Medicare patients are not eligible for).

Geezer I just looked it up. Abbvie does have a program for those who cannot afford the medication — call them to see how to qualify and if you would. https://www.abbvie.com/patients/patient-assistance.html?utm_source=myAbbVie-Assist-URL

I’ve also used Apriso’s assistance program and uceris. I’ve found on the whole the representatives are very nice and helpful to deal with. It takes a while to fill out the applications and get qualified but so worth it in the end.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/5/2022 8:53 AM (GMT -8)
Flowers, thank you for your time. I did contact abvie this weekend. I am waiting to hear back. Thank you again. Enjoy the upcoming holidays and stay well.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2530
Posted 12/5/2022 11:40 AM (GMT -8)
Geezer -- I am confused about your insurance coverage. If you are on Medicare isn't that your Primary insurance and Blue Cross would be your supplemental and covers what Medicare doesn't? Or are you using a Blue Cross Medicare Advantage policy?

We are still in open enrollment right now so I think you can switch plans for 2023. Something you might want to look into.
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Lka58
Regular Member
Joined : Nov 2018
Posts : 60
Posted 12/5/2022 11:55 AM (GMT -8)
CCinPa - I was thinking the same.
If Medicare was primary the med prescribed would be approved. Or am I wrong?
This concerns me the most.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/5/2022 7:19 PM (GMT -8)
I'm sorry for the insurance confusion. LOL I tend to confuse myself. LOL I have Medicare parts A&B but not the prescripton coverage. I have Bluecross/blueshield as my primary which covers my drugs. Also have Tricare which picks up a good part of my co-pay after BC/BS. I've TRIED to get my pharmacy through Tricare but was told that since I have my other insurances, it won't pay the bulk amount. As I've said many times before, I'm not the brightest bulb in the hallway. I shall call my gastro doctor in the morning for an appointment to see if I can make heads or tails of it all. As it stands right now, I'm beginning to flare, am taking Mesalamine, and am just plain worried
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1640
Posted 12/6/2022 4:31 PM (GMT -8)
Re: Medicare and prescriptions, it’s important to remember that regular Medicare does NOT cover prescription medications (unless you’re in the hospital or dr. administered—which is why infusion medications are covered. I know it’s very confusing at first!).

For prescription medications you need a Part D plan and not all medications are covered or if they are, the costs can be exorbitant.

Geezer, so you have Medicare as your secondary with your primary through workplace? Or do you have an Advantage plan?
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/7/2022 3:48 PM (GMT -8)
Flowers...yup, retired but have bluecross from work. Also have Tricare from military retirement. HOPEFULLY...my doctors staff and my insurance MAY get it straight TODAY. Time shall tell. Insurance is so confusing to me. Medicare is my primary, Bluecross is secondary, and Tricare is third but I don't have part D of Medicare. Anyway....after yesterday and all of the back and forth doctor and insurance calls, I can only HOPE it's all straight now. We'll see. LOL I'm only me, but can only imagine the turmoil so many folks find themselves in, in dealing with pharmacies and insurance. Having an ongoing illness is bad enough, but dealing with all the bureaucracy can be overwhelming. I do thank all of this forum for any help. Sometimes, just the one kind word helps more than any drug we can fight to get. Stay well, be safe, and enjoy some of every day.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1640
Posted 12/7/2022 4:39 PM (GMT -8)
Hope it all works out, geezer! Let us know! (curious minds are curious! :-D )
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/10/2022 3:14 AM (GMT -8)
LOL I'm still riding my dead horse. LOL Finally, my insurance gave it's approval for Rinvoq for one year. I suppose they hope I'll be dead by then. LOL Now I'm again in the 'waiting room', awaiting CVS Specialty pharmacy to fill the prescription. It's been several days now; so hopefully, it will be done soon. sheesh After being jerked around for over a month with this medication ordeal, I'm now in a flare. I'm sure I helped myself by being stressed a bit by the unknowing if I could even get the new drugs. So, as of today, I'm still in limbo, but getting closer....I HOPE! I did apply for all of the patient assistance, co-pay assistance, and the other programs Rinvoq and Abbvie say they provide. As always, I was told, oh yes, by all means we can help you. Then, once I tell them I have Tricare along with my BlueCross, it's always the same answer...sorry, you don't qualify due to your having Tricare. sheesh Maybe I'd be better off if I just canceled all of my insurance!!! LOL Anyway, sorry for all the whining; as you all know, pain, discomfort and worry do funny things to our thought process. Just wanted everyone to be aware of what they may have to endure with insurance and meds. Every enjoy the upcoming holidays and stay well!!!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1640
Posted 12/10/2022 4:00 PM (GMT -8)
I wish to heck insurance wouldn’t drag their feet so long that we end up even sicker than we were when we started. It’s so frustrating!

I hope you get your med soon and you get out of that flare too! Nothing worse than being miserable with this dratted disease! (Or any other for that matter).
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geezernow
Regular Member
Joined : Nov 2017
Posts : 313
Posted 12/10/2022 4:09 PM (GMT -8)
Flower...Thank you and I totally agree about insurance dragging their feet. But, it isn't them who are sick. LOL I'll be quiet now and no more whining from me.....for a while I hope. You feel well and happy holidays to you and all.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1640
Posted 12/11/2022 10:21 AM (GMT -8)
Whine away! We’ve all been there and understand. And that’s what this place is for anyway! 😀

Please let us know when you get your med and your progress. We’re always interested to hear progress reports — and especially so when it’s a new med.

Happy Holidays to you all too
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2530
Posted 12/12/2022 5:05 PM (GMT -8)
Ditto what Flowers said smile
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7655
Posted 12/13/2022 11:03 AM (GMT -8)
First, your doctor should've appealed when they first denied it a month (or more?) ago. Second, why can't you try Xeljanz? Please remind me. It's basically the same drug and it's been around longer so I bet insurance might approve that over Rinvoq.
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