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Husband just diagnosed with ulcerative colitis.

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Ulcerative Colitis
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Sand&Sparrow
New Member
Joined : Jan 2021
Posts : 7
Posted 1/28/2021 7:58 PM (GMT -6)
My husband was just diagnosed with ulcerative colitis. He has been sick for several months before we found out through a colonscopy what was wrong. Now we are finding out that we can't afford the preferred medication. We are so discouraged. We were hoping to get him started immediately on a medication to reduce the inflammation and get him feeling better quickly. He is sooooo tired and not himself. How long in general does it take to find the right med and get things under control when newly diagnosed? I'm already second guessing the doctor as we are getting more info from the pharmacist than the doctor.
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seattleibdho
Regular Member
Joined : Feb 2014
Posts : 21
Posted 1/28/2021 8:29 PM (GMT -6)
Hi Sand&Sparrow,

What medication can't you afford? All of the companies that provide medicine for Ulcerative Colitis / Crohns, have financial assistance departments. They should be able to help you for sure. The quickest way to kill inflammation and get back to semi-normal is the horrible steroid drug known as "Prednisone." Unfortunately, there is no timeline on finding the right med to get things under control, everyone is different. What medications is your husband on at the moment? Anyway welcome to the forum! Hope he gets relief soon.
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Sand&Sparrow
New Member
Joined : Jan 2021
Posts : 7
Posted 1/29/2021 7:54 AM (GMT -6)
My husband hasn't started a medicine yet because we found out the mesalamine was going to be $500+ a month. I've been trying to find coupons but it will still be about $180 a month. Still too much. Tried calling assistance programs and manufacture only to be put on hold for several minutes and have never been able to talk to a live person. It looks like it will take time to sort that end out and my husband just wants some relief and to get started on something. He got covid at the end of September and it must have triggered this flare. He lost over 26 pounds in 2 weeks and is still losing though more slowly. It's hard to see him this way.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1361
Posted 1/29/2021 9:00 AM (GMT -6)
I understand your frustration! I was in the same boat to an extent thanks to insurance.

Most pharmaceutical manufacturers have two programs. One is a copay coupon program where you pay a portion of the cost. Then there’s another for those who aren’t covered by the coupon program or can’t afford their copays. I used to get my Apriso (mesalamine) for free, shipped directly to my house by the manufacturer through a specialty pharmacy. It does take awhile because there is an application process so it takes about a month to get approved and set up. I’m no longer on Apriso so I don’t know if this is still their number but the last one I had was 833-862-8727. You want to call the manufacturer (look them up online for whatever drug you decide to go with) and ask if they have a Patient Assistance Program for those who can’t afford their copays. I’ve also been hearing ads that mention COVID relief so if your husband had COVID that might also be applicable.

Be proactive! Uceris foam (a rectal med which is very calming and helps with symptoms) also has the “free” option. I think they used to be manufactured by the same company as Apriso.

In the meantime if he’s not already on prednisone it does provide great symptom relief in the short time. It’s not a cure tho or to be used long term.

Keep us posted on your progress!
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momto2boys
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Joined : Jun 2013
Posts : 2519
Posted 1/29/2021 11:20 AM (GMT -6)
These medications are very expensive. We have a high deductible plan and have to pay out of pocket for e wry thing until we hit our deductible. That being said, my doctor’s office always gives me samples of medications if I ask. In fact, they ask me at every visit if I am able to afford my medications because they have samples. If you could get some meds from your husband’s doctor it would be a huge help. That said, the fasted way to get better is prednisone, which is very inexpensive but not a long term option.
Do you know how much of his colon is involved? Balasalazide is a less expensive option but won’t be effective if he has inflammation beyond the sigmoid.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1499
Posted 1/29/2021 3:32 PM (GMT -6)
I would really avoid prednisone if you can. Yes it's cheap and it works quickly but 1. There is a risk of being stuck on it long term which is associated with irreversible side effects and 2. It will mask whether any other medication you try is effective. Prednisone should not be a first line therapy for new patients with (relatively) mild disease.
I feel more strongly about this than most because I was taking low doses of prednisone for 2 years and ended up with severe osteoporosis.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16368
Posted 1/29/2021 6:16 PM (GMT -6)
There's affordable options, see the following

https://m.goodrx.com/aminosalicylates
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Sand&Sparrow
New Member
Joined : Jan 2021
Posts : 7
Posted 1/30/2021 8:21 AM (GMT -6)
My husband gotted started on sulfasalizine yesterday. 2 pills 4 times a day. Hopefully it will help him get started on calming the inflammation and other symptoms soon. I don't know how feasible it will be in the long run as he will have a hard time sticking to taking them 4 times a day and that with food.
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/30/2021 11:58 AM (GMT -6)

Sand&Sparrow said...
My husband gotted started on sulfasalizine yesterday. 2 pills 4 times a day. Hopefully it will help him get started on calming the inflammation and other symptoms soon. I don't know how feasible it will be in the long run as he will have a hard time sticking to taking them 4 times a day and that with food.

Sulfasalazine and mesalamine formulations are the safest drugs we have for UC. They are generally safe for LT maintenance so it's important to stay on them. He can try 2-3 times a day when he is in remission. Way better than eliminating the medication and being debilitated by flare ups. Balsalazide is another cheap UC drug that is a mesalamine. I took it once or twice per day in the past even though the instructions said 3 times.
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Sand&Sparrow
New Member
Joined : Jan 2021
Posts : 7
Posted 1/31/2021 5:58 PM (GMT -6)
Thanks all, for your replies and encouragement. We are so happy to have found such an informative, supportive group. Both my husband and I are feeling a little more confident that he will be feeling better soon and that with time, he will be able to manage the flares. It's apparent that unless you have UC, or are close to someone who has it, you don't know how much it can affect quality of living. My utter respect for all those who have UC.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 3/7/2021 5:43 PM (GMT -6)
sorry you both are having to go through this - i can't imagine dealing with med problems on top of a new diagnosis -

you might look into the AIP diet while you are working on things - if you don't know already, UC is an auto-immune affliction - many folks, including me, have benefitted greatly by changes in diet and lifestyle -

good luck to you -

TT
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