Hi Adam, (Michael wrote this to me, but it is really for everyone here!)
I have been suffering with UC since the mid 90’s. I receive your e-mail updates and follow you on Facebook. Now I am looking for some help.
I have been on a lot of medication over the years that both helped with flare ups and keep my UC in remission.
In early December of 2016 I had a bad flare up and the current medications of Azathoprine, Balsalazide, Rowasa and the start of Prednisone was not doing the trick. It was in April of 2016 that I started Entyvio treatments {Health Insurance Approved} – I was on the Entyvio along with the Balsalazide and the lowering doses of Prednisone I started to have relief. I was also able to stop the Azathoprine and went into remission.
In May of 2018 I started to have a bad flare-up after dental surgery and passing of a kidney stone all in the same week. My doctors at that time did blood tests and showed that the Entyvio was not staying in my body and I had to start the Prednisone all over again. This flare-up and put me out of work and I am still out of work to date. In July 2018 I started Remicade at the doctors recommendations. I had three treatments of Remicade dose of 425 that was not helping – then I had four treatments of Remicade dose of 820. This was working but not at 100%, I still had multiple bowel movements in a day and blood and mucus. During this time I was on the steroids from June 2018 to September 2018 – this was a rough time and I had a reaction when I was off them
The doctors after two colonoscopies one in June 2018 and a second in October 2018 both showed a lot of inflammation. They were talking about surgery.
The doctor then said let’s try Xeljanz – I started the Xeljanz 10mg tablets {one tablet twice a day} in February 2019 – it took about a month on the Xeljanz and Balsalazide to kick in but I have had relief where the blood stopped right away and now the frequency to use the bathroom had calmed down.
Here is the problem my drug insurance company WILL NOT PAY for the Xeljanz – we have sent two appeal letters and both were denied – CVS/CARMARK states that I need to their first preferred product Humira and or their second preferred product Simponi. My doctor does not agree with this stating it will not help and I would have a flare up. (Xeljanz was approved in the USA for treating ulcerative colitis in various conditions back in May of 2018)
Note I was on two infusions which my health insurance approved with no questions asked – and now the Rx carrier will not approve. I have been using samples from the doctor’s office, but I do not know how long this will last.
Can you help – do you know of other patients with this issue. I have not reached out to the drug manufacture as of yet, I am seeing what else the doctor can do to help. Any help on your end would be greatly appreciated.
Thank you in advance, my contact information is noted below.
Michael B
I know it’s hard when you are feeling like, well we know what you’re feeling like, to see your way through this. There are many discount drug cards out there like GoodRx. Perhaps you could investigate a few and see if you can get the drug you want reduced enough to be affordable. Also, call around to different pharmacies, prices vary widely, or try on-line. Are you open to getting a second opinion, or trying a gastro doc with a different approach? Have you tried a naturapath or nutritionist that might be able to help your body heal itself through diet rather than drugs.
Just some thoughts. Everyone’s path is different but don’t give up! You never know what you might find that works.
Good luck to you!
My son was on Prednisone and had an infusion of Remicade but he developed anti-bodies in his blood to Remicade and it no longer worked. Prednisone has bad side-effects. He is now on a low dose of Azathioprine and Humira which is working well
Hey Michael,
I find that it takes three or four letters from your doctor till you get approval. I know it makes no sense but sometimes you have to send them. I think they are hoping you will give up. Have the doctor explain how infusions and shots don t work well for you and this is the first drug that seems to be helping right away and long term. Also talk about the convenience and how not having to take shots or go in for infusions has helped your stress level and you have less flairups, if any. When I had to get approved for a med my doctor did this. She also explained that this med is approved for this use and works well for other patients. Good luck. Hope it works out for you.
Contact the drug company!!! It usually works that way,,, at least for a period of time,,, sometimes a year at a time of free drug!!!!
Michael,
This process is so frustrating, I know. I’ve been through that before with getting Entyvio approved and on a more frequent dosing plan. I’m sure your doctor has already gotten on the phone with them but that really can push things along too (the reviewing doctor my insurance used to “review” my case was a pediatrician with no UC experience – it was ridiculous).
I’m based in California and the state has a separate complaint and appeal process than the appeals process that is internal to my insurance plan. I’m not sure 1) if, by appeal, you’ve used only the insurance’s process or something more and 2) if, where you are based, your state/country has its own appeals/complaint process.
If 1) and you’re in CA and haven’t tried the state’s process, definitely try them. They ruled for me and noted they would investigate my insurance for improper denial. https://www.dmhc.ca.gov/FileaComplaint.aspx
If 2) it would be good to look up if your state/country has an independent complaint mechanism. The state has an interest in protecting its constituents so maybe even checking out if your Attorney General or the like can be contacted.
Finally, good ole public shaming helps a lot in getting better responsiveness.
PS I’m also on Xeljanz concurrently with Entyvio ( in my first couple of months). So if you have questions about that, let me know and we can see if Adam can connect us separately for the exchange.
I’m also happy to share separately my outline for complaints to insurance/state agencies. I tend to just bother them until I get my way (which is exhausting, particularly when sick, but I see it that the job of the reps is to say no to the patient first).
Good luck with everything.
Hi Andrea,
Can you tell me more about being on xeljanz and Entyvio as a dual treatment? Why did your doctor choose this plan? I am interested in the same combination therapy. Have you seen increased results?
Thank you,
Jessica
Sure. I’ve been on Entyvio since May of 2016 (300mg every 4 weeks) and it got me a long way to being better, but I’ve always had residual/some active UC, including some urgency even though I don’t have to use the restroom often. I also have a related condition that is UC triggered called Uveitis (inflammation of the white of the eye). We are trying the combination of the two to see if 1) it gets me over the final hump of active UC and 2) it will serve the dual purpose of keeping the Uveitis under control (I was having to take Methotrexate for this and I hated it).
I haven’t been on Xeljanz long and it has an 8 week tail from when you first start for getting results. I think there has been some improvement so far, yes. You will have to get more labs for a while and you have to watch cholesterol levels.
Thank you for the info! My doctor told me today he is willing to try the Entyvio as well, but insurance might hold it up. Hoping the Xeljanz kicks in…just started it yesterday.
Best of luck to uou in your recovery! I hadn’t heard of the eyes being affected.
I have to agree with Paula. My husband saw five GI docs before he finally found one that focused on finding the cause of his UC (turns out he is gluten sensitive) rather than throwing drugs at it. We found her after 4 Remicade infusions knocked him for a loop (absolutely NO energy…slept almost all the time…constant joint and muscle pain (he was walking like a 90-year-old-man). After the Remicade did that to him his doc wanted to start him right away on Entyvio before he was over the side effects of the Remicade! That’s when we went looking for a new doc and found one four hours away in Houston who uses “integrative medicine”. She put him on some potent supplements and he’s been flare free for about a year now.
Anyway, back when he was put on Remicade, our insurance refused to pay and told him they would however pay for Humira. We were dead set against Humira because his sister was on it for rheumatoid arthritis and we are convinced it caused her leukemia which she died from. His doc at the time contacted the insurance company and they relented after the doc’s efforts and paid for the Remicade. So if you’re determined to go that route, and if you haven’t already, see if your doc with help you.
Also, Holly’s advice is good. Often the drug company will offer a “coupon” that will get you at least a year of the drug for free, so definitely contact them also.
Good luck and best wishes
This is Kathy I have had UC’ for 40 years off and on taking Sulfasalazine and some mesalamine enemas can’t seem to shake it this time bleeding a lot with mucus Regular poops but large taking stool softener. Drs say it’s not food Off of milk products. Does any one have an idea what to do. I take a good probiotic and good vitamins
Make sure your doctor is writing why this is preferred, what has been used and why using this is preferred. The GI MUST write this letter, not hand it off to the medical assistant or office manager. They must use the science behind it, that there were failed attempts at using the same class of meds. Just stating a change will cause a flare or not work isn’t reason enough. The science must be referenced.
Do not just appeal, file a grievance, (if possible) which places the insurer under a different timeframe for resolution. Ask to have a Medical Director review. File a complaint with your state insurance board. File a complaint with the state department of health for denial of care. Reach out to your medical insurer (CVS is only for medication coverage) to have a Case Manager intervene on your behalf. After all, the medical provider will need to pay if you wind up in the hospital in a flare.
If all else fails, reach out to one of the local news outlets. Insurance companies do not like bad optics, even major nationwide ones such as CVS. If your local congressperson or senator is vocal on the insurance coverage issues, this could be a great resource.
Most of all, don’t stop fighting.
Hi Michael, I have had a similar exprience over the last 2 years, stumbeling over lost of response for humira, entyvio, stelara. If the doctor is prescribing Xeljanz, it is because you are the same type of person as I am whom doesn’t respond well to biological meds like humira and on. I don’t know where you are from, but a letter from your doctor to your insurance company explaining that you are part of the one thitd of human beings who do not respond to those medication might do the trick, especially if you have developped antibodys. Another thing I have been told by my pharmacist is that insurances don’t cover the full bottle but will for the weekly tablets. If this is any help to you, glad I could cue you a little ;)
Good luck!
Hi Michael!
I am in this EXACT same situation. I’ve never been more frustrated with CVS Caremark. Also, I had never even heard of Simponi before I got the denial letter. I’ll be following this post and hopefully we can both figure something out….
Michael,
FYI, Go here to link below
https://search.aol.com/aol/search?s_it=webmail-searchbox&q=what%20to%20do%20when%20insurance%20denies%20medication&s_qt=ac
P.S.
After being diagnosed and hospitalized with Pan Colitis in Oct. 2015, and going through 4 severe flare ups, then a bloodborne infection from Prednisone, (weighing 109 pounds) I started making the SCD 24 hour home made Yogurt. I went into remission almost immediately, with perfect BM, no blood, no mucus, and that was 22 months ago! I’m 68 years old and back up to 150 pounds, and eating a regular healthy diet as well.
I hope this information will help. Michael, please give the yogurt a try, You have nothing to loose and all to gain.
Best Regards, and Many Blessings to You
Charlie
What is this yogurt??? I just found this site, as my UC is flaring again and I am afraid of biologics (the only thing left). I am 62 years old and was diagnosed less than 2 years ago with pan colitis (worst form of UC). I have been on steroids, rectal foams, and just developed acute pancreatitis from mesalamine, which was helping. Now I am in another bloody flare and disgusted! Other than the UC, I am in great health, never smoked, do not drink and walk 3-5 miles a day. This is a horrible condition and some of the drugs are worse than the disease…. Thanks for sharing!
Donna
Try this for a discount.
https://ra.xeljanz.com/rheumatoid-arthritis-support-resources/financial-help
When there is not generic, the company usually gives some kind of card to get a discount if insurance doesn’t cover it.
You should definitely contact the drug manufacturer. I was on Remicade for almost two years and the company took care of my co-pays through a debit card of sorts. Please see some information I found regarding your treatment which offers a similar savings card.
Good Luck to you!
Manufacturer Coupon
VISIT MANUFACTURER SITE
Many manufacturers offer programs that will reduce your out-of-pocket costs for this prescription. These programs are free but may have some rules or restrictions, so you’ll want to review carefully. When you’re ready to use this coupon, simply present the coupon to your pharmacist with a valid prescription for your medication.
Program Name: Xeljanz Co-Pay Savings Card
Provider: Pfizer
Phone Number: 1-844-935-5269
Website: https://www.psa.xeljanz.com/financial-support
How do I get the discount? Register online to download and print a card.
How much can I save? Your out-of-pocket cost can be reduced to as little as $0, with a maximum savings of $12,000 per year.
Do I need insurance? No. However, you will pay more without commercial insurance.
Number of uses: Limit one per month.
Expiration: 12/31/18
Other notes: N/A
I’m so sorry to hear that your insurance won’t cover your treatment. How about contacting the drug company? Clearly they are in the business to make profit but it’s in their interest to have you as a customer and find a way to buy their drugs!
The drug company should have already identified which insurance companies will cover their drugs. Perhaps you could switch insurance?
In parallel is there anything else you could change that would help? Personally I am still in denial about my own UC diagnosis from 10 years ago and believe that we should naturally heal if we remove the underlying cause. I don’t want to be a lifetime customer of this “sick-care” system! I eventually found that going gluten free enabled me to get off prednisone on the 3rd attempt without getting sick again. Keep a diary to enable you to look back and identify any patterns in symptoms and foods or other factors you suspect. Then test eliminating it 100% for a while. Good luck!
I’m so sorry to hear that your insurance won’t cover your treatment. How about contacting the drug company? Clearly they are in the business to make profit but it’s in their interest to have you as a customer and find a way to buy their drugs!
The drug company should have already identified which insurance companies will cover their drugs. Perhaps you could switch insurance?
In parallel is there anything else you could change that would help? Personally I am still in denial about my own UC diagnosis from 10 years ago and believe that we should naturally heal if we remove the underlying cause. I don’t want to be a lifetime customer of this “sick-care” system! I eventually found that going gluten free enabled me to get off prednisone on the 3rd attempt without getting sick again. Keep a diary to enable you to look back and identify any patterns in symptoms and foods or other factors you suspect. Then test eliminating it 100% for a while. Good luck!
Hi Mike. I agree with Ali about contacting the drug company. I went thru the same thing to get Lialda. It was a thousand dollars a month. My doctors nurses contacted the company { Shire } and got me the paperwork and submitted everything for me over the phone as well as faxing it to them and following up on it.God knows I owe them for all their help.Well I got the Lialda and have been getting for free since 11/17. It was like a switch had been turned off. I have been in remission since. I was going bathroom 20 times a day. I know I’m very lucky and I thank God all the time. So get some help from your doctors office and get it from the drug company, they can afford it. Keep believing you will get better and you will! I will put you in my prayers also.
You will get better!!
Michael ask your doctor for free samples, I had a similar situation and I called my doctor and told her I simply could not afford it and the insurance would not pay for it. She was able to pull out all her samples to give me. It was enough for the 24 day treatment. Also, insurance companies have a list of places he can call for assistance. Here are a few 1-800-769-3880 RX outreach program, 1-866-699-8739, 1-800-503-6897, 1-888-477-2669, 1-866-316-7263. Hopes this helps!
I was in the same situation when my doctor put me on Xeljanz a few months ago. I worked with Xeljanz Support and they have two different methods of helping you pay for the drug (either free or greatly reduced). Their contact support numbers are above from others who have posted. Their support group is super helpful, but because this is a new drug for UC it is causing all sorts of havoc for docs, patients and insurance companies. As of January this year, my insurance (UHC) actually started covering my Xeljanz and CVS Caremark is considering it a Tier 2 drug. This is unheard of and a good thing. All the rest of the UC meds are Tier 3 and will generally never get covered by insurance unless you and your doctor fight hard against denials. If UHC/CVS Caremark is beginning to cover it, you know the rest of the big companies aren’t far behind. So keep up the faith. But, when your insurance does start to cover it and you have been receiving the drug for free for months, it brings its own set of new $ issues. Make sure you have saved for your deductible and copays. As a side note, Xeljanz will give you a free 30 day supply initially while they work through your insurance issues when you first enroll. And, your GI doc should be filled to the brim with samples of Xeljanz since they are pushing the drug for UC people so hard right now. Best of luck to you!
What a drag. I would try talking to a human being at your insurance company. If that fails, I’d definitely talk to the manufacturer. I would also contact your local, state, and federal representatives and tell them your story.
I’ve had UC since 2006. I was on Asacol and Mercaptopurine (6MP) for years with varying degrees of success. I finally researched and then tried medical cannabis. Within a month I went into remission. A few months later I stopped taking the Asacol and the 6MP. Now I only take 2 pinheads a day of cannabis oil. It’s a miracle medicine. There is no psychoactive effect. I’ve been clear for more than four years. If your state doesn’t allow medical cannabis, I would seriously consider moving to a state that does. Drastic yes, but it works.
In addition, these things help me tremendously: Adequate sleep, diet, and exercise. I treat them all like they are my medicine.
Good luck with this current predicament. Wishing you well.
Hi John
I am interested in the medical cannabis oil. I am in Australia and it is hard to get approval for it here but I know people who find ways to obtain it here for a number of reasons but don’t know anyone who is using for UC … were the improvement for you immediate or over time?
I asked my GI yesterday about he said there was not enough evidence blah blah playing it safe.
…and I love your comment – ” Adequate sleep, diet, and exercise. I treat them all like they are my medicine.” treat them like medications! Sage advice.
Cheers Donna
Hi Donna- Within a month, I went into remission. Have been clear for more than 4 years. Without drugs! Tell your doctor that.
Perseverance is key. I was diagnosed with UC at age 13 in 1982. Things were fairly under control with meds over the years until 2012 when the sh@t really hit the fan. Hospitalized for three weeks. Went on Remicade which was useless. Did methotrexate injections which helped somewhat. My G.I. then put me on Xeljanz, off label. It was only approved for arthritis at the time. We got it approved after several letters from two different MDs. That med worked great until the next great thing came along which was Entyvio. Symptomatically, I was feeling pretty decent. Unfortunately, my insides told another story. Long story short, my 46-year-old large intestine and I parted ways Feb 2016. My indoor plumbing got reconnected May 2016. No more meds!
I
When I first got sick my short term disability only lasted 3 months. Once Medicare kicked in they would not pay for my meds. We appealed twice. Then I was told about the patient access network. Contact them and sign up for medication assistance.
https://panfoundation.org/index.php/en/
Michael, I am so sorry we all have to go through this. I too have struggled with medications; with either astronomical pricing or insurance not covering without trying another first. My case was I wanted to go on Entivio but the insurance wouldn’t let me unless I had a fail on Remicade. Now, my doctor won’t pull me off of Remicade as we would need to start all over with care. You do have a couple of options, which I wish more doctors pass along to their patients. 1. You can see if the doctor has samples 2) You can contact the Manufacture. They most likely have a plan that will pay up to $$ per year and you can have them work right with the doctor’s office. 3)rd option is- trying GoodRx.com. This option you do not go through your insurance but pay at a deep discount. Not sure how much but it is worth a look. Good luck!
Hi Michael and all
really useful responses here. I am in Australia and hopefully will be approved for Entyvio soon thankfully funded through our medicare system if I fit the criteria – which sounds like the same measure used by your insurance company. I don’t know anything about insurance where you are but a common theme with insurance companies, as has been pointed out above, is they will do whatever it takes to get you to go away.
I am wondering if you have had good read through your policy and or you or your Dr have asked them to point out the section of the policy that they are relying on to refuse your request. Is it actually set out in the policy or is it just standard practice to reduce their overall costs? There are so many people who do not have the strength or support to run the battle. As others have said BE THE SQUEAKY WHEEL Good luck! Cheers Donna
https://www.rxhope.com/PAP/pdf/xelpae1957.pdf
Financial help for xeljanz
https://uc.xeljanz.com/financial-support
Copay card
Hi Everyone,
My fiancé uses Zeljanz as his new medication and then had lost his insurance so I contact the Speciality Pharmacy for assistance, not sure where Michael lives but have him check with the Speciality Pharmacy at his hospital they may have a program to help him. We used one called hardship thru the pharmacy it’s a small application along with a w2 once approved by the Zeljanz distributor case manager person their pharmacy will contact you and mail them to your home. Here is the number to Zeljanz maybe Michael can call and see what assistance programs they have in his area +1 (844) 935-5269
Shirley
thx Shirley!!!:)))
Michael your story of jumping from biological to biological to tnf blockers and immunosuppressive drugs 6mp immurin azathioprine, not being able to get off prednisone. I have been on them all remicade Humira simponi and Entyvio. I relied on conventional medicine for 4 years now (diagnosed March 2015) and nothing has worked until I got off the medication and changed the way I eat and introduced fermented veggies and raw milk and yogurt. Another key component is to address the infection that is eating you from the inside, it is what causes the immune response of inflammation. I think this is the main reason everyone I know with UC has minor success with medication and then it eventually stops working. The meds will never heal you they are only used to manage symptoms
Hi fellow UC sufferers (and Adam, who must be my neighbor in Menlo Park)–
I have been following this site for a couple of years but this is the first time I have been moved to post.
I have had UC for more than 50 years (first diagnosed at age 16), but I have had several long remissions. Then my folks both started to decline in health and mental function and as their only living offspring, all those problems fell to me to deal with. I stressed out and for the last 6 years I have been in a flare-up that just wouldn’t quit. Nothing worked except high-dose prednisone, which I couldn’t keep taking long-term. Than Entyvio came along and worked pretty well if I got infusions at twice the usual frequency (every 4 weeks). When Xeljanz was approved as a treatment for UC, we added that to the Entyvio and that combo was working really well. Until I filed for divorce (adding another stressor) and lost my spouse’s excellent federal employee health benefits, which had provided me with Xeljanz at no cost to me. I am on Medicare, which pays for in-office treatments like Entyvio, but my Part D drug insurance would only pay a small fraction of the cost of Xeljanz, leaving me with a $1000 co-pay for a month’s supply. No way could I afford that. My UC healthcare provider (at UCSF) filled out the paperwork and I filled out a form about my financial situation and sent it to Xelsource. While we were awaiting their decision, my provider gave me 3-months’ worth of samples to tide me over. Long story short, Xelsource came through and their specialty pharmacy sent me the first month’s-worth of Xeljanz via FedEx 2 two days later! Without a co-pay!
The lesson is be persistent. I think at some point drug companies find it cheaper to just give you the meds (the actual cost to them in no way resembling the co-pay or cost to the patient) rather than fighting you.
Cheers,
Sherry