Ulcerative colitis...completely overwhelmed...expensive meds

[Anonymous]

Anonymous wrote:OP here. After hours and hours on the phone, spontaneously crying to more customer service representatives than I'd like to admit and lots of TV for my two year old, I didn't make a whole lot of headway. I was finally able to get a manufacturers coupon for Canasa (this was the original medicine of choice from my GI). It turns out the "$60" enema would have actually cost me $370, so since it sounded horrible anyway and needed to be special ordered, I went with the Canasa suppositories for the bargain basement price of $450. Our insurance deductible is pretty high, but it looks like we may be on track to hit it

I've experienced a lot of emotions in the last couple of days and it was very comforting to read the encouraging words and the experiences of others on this thread, so, thank you very much for taking the time to respond. For now, I'll just take it one day at a time and try to focus on the things I'm grateful for. I already tucked my 2yr old into bed and now I'll kiss my precious baby, hand her off to my husband and go upstairs and figure out how the hell to put a suppository in my ass

PP here-Remember, too that life is hard with a new baby and a toddler and now the UC and all that comes with it on top of that means this is an unusually hard time. It won't be this way forever. Your babies will get a little older, everyone will sleep more, you'll feel better physically, and the management of your disease will become more second-nature. This, too shall pass.

Did you happen to find this Canasa patient support card? It looks like it might be a help. https://activatemysavings.com/canasa/

[Anonymous]

My mom has had UC for about 30 years. She kept a food diary soon after diagnosis and saw incredible improvement when she eliminated foods that caused flares. She was able to stop taking medications and keep it under control with her diet. I just wanted to share a success story. As you said one day at a time. Best wishes!

[Anonymous]

Anonymous wrote:Have you checked goodrx.com? Looks like a tiny bitter cheaper at Costco than $450 - I have found different pharmacies to have wildly different rates
I do think you need a prescription discount card - also when is annual enrollment for health insurance at your husbands company?? You need to review the plans and go to their websites and check drug prices
He he hugs - SO overwhelming

OP here, thank you for the tip. I'm lucky to have had good health up until this point and prescription discount cards are a new concept to me. Can you explain to me what I'm doing wrong though, when I go to the site, Costco doesn't come up as an option, Sams club does, but all of the prices are $900+...

[Anonymous]

PP here-Remember, too that life is hard with a new baby and a toddler and now the UC and all that comes with it on top of that means this is an unusually hard time. It won't be this way forever. Your babies will get a little older, everyone will sleep more, you'll feel better physically, and the management of your disease will become more second-nature. This, too shall pass.

Did you happen to find this Canasa patient support card? It looks like it might be a help. https://activatemysavings.com/canasa/

Thank you for the perspective, I appreciate hearing it and I know you're right. The Canasa patient support card is the one I used, apparently some people "pay as little as $35", but I wasn't one of them!

[Anonymous]

My mother developed UC as a young child. She lived with it many years before having surgery in her 40s. She's 70 now and now excellent health. Before sh had surgeries she had flare ups but basically led a normal life. She did eat s bland diet for a long time, no idea if that's still recommended. Best to you OP

[Anonymous]

OP, you said that you have a high deductible plan. We changed to a high deductible plan and the first round of drugs after the start of each year is very expensive. I paid nearly $900 for my crohn's medication. After we meet the deductible the price drops to almost nothing. It was a sticker shock the first year but now I expect it, and fill medications accordingly (so I fill as much as I can after I meet the deductible before the new year starts). I tried using coupons but that route also didn't work for me.

I was diagnosed after the birth of my third child. The first year following the diagnoses was the toughest. Once you figure out the management of the disease it does become easier. Also, I became easier on myself -- I rest when I can and don't feel guilty about it etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Have you checked goodrx.com? Looks like a tiny bitter cheaper at Costco than $450 - I have found different pharmacies to have wildly different rates
I do think you need a prescription discount card - also when is annual enrollment for health insurance at your husbands company?? You need to review the plans and go to their websites and check drug prices
He he hugs - SO overwhelming

OP here, thank you for the tip. I'm lucky to have had good health up until this point and prescription discount cards are a new concept to me. Can you explain to me what I'm doing wrong though, when I go to the site, Costco doesn't come up as an option, Sams club does, but all of the prices are $900+...

Sorry it is Sams club - it comes up as $855 for a 31 day supply and 890 for a 30 day supply (don't understand that distinction but worth asking them) - your $450 was for a two week supply you said right?

[Anonymous]

Hugs, OP. I was diagnosed with pancolitis in 2007 when I had a toddler. As it turns out, that was the only flare I've had since then. So this isn't necessarily a life sentence. Asacol was a lifesaver for me. I never did the suppositories or enemas because my ulcers were more widespread, but I have heard many who've had success with them.

You've got this. Hang in there.

[Anonymous]

Hang in there OP.

My copay is $10 for a 2 month supply of $1500+ mesalamine. I worry about what will happen when I stop work eventually.

[Anonymous]

So sorry you're going through this, OP. You may have luck contacting the drug company - most have patient support programs that can help financially, although there are usually financial criteria. In the meantime - if you can - suck it up and fill the Rx and see if it works. It sounds like a lot of PPs have had great success with similar treatment, hopefully you'll do the same and once you're under control maybe you can figure out diet/lifestyle changes that can reduce your need for medication. But get it under control!

This can be a manageable disease or it can be super difficult to treat. I know several people who can't even get it under control with the most aggressive treatment, my DH being one. I'm actually sitting with him in ICU after he had emergency surgery to have his colon removed over the weekend. He was diagnosed with an initial flare in August, obviously much more severe than yours.

Hugs to you and your family. This treatment might be expensive and literally a pain in the butt, but hopefully it wipes it out. Good luck.

[Anonymous]

Try canadian pharmacies. I only pay $250 for a 90 day supply

[Anonymous]

Anonymous wrote:Try canadian pharmacies. I only pay $250 for a 90 day supply

I was just going to say this! No experience with this particular drug, but I would absolutely look at Canadian pharmacies. Also, if you have friends who live overseas, I'd be making some phone calls to see if they can get the drug there and if so, at what price.

[Anonymous]

Have you tried getting back to basics with a really strict diet (no processed foods, no gluten, no dairy, etc) and high doses of something like Florastor? Those things help a lot of people and are recommended by many gastroenterologists.

[Anonymous]

Anonymous wrote:Try canadian pharmacies. I only pay $250 for a 90 day supply

OR Try Indian pharmacies. You will get generic meds made in India for a fraction of cost (a few dollars tops). Ask your DH to ask any Indian working in his office if they can know someone going to India who can pick up the meds for you, or even an Indian neighbor.

Also try other alternate remedies...http://www.planetayurveda.com/ayurvedic-medicines-ulcerative-colitis.htm

[Anonymous]

OP, when open season happens can your husband change insurance carrier? Or work somewhere with better insurance? I say this because while meds are expensive those prices are atrocious and I have never heard someone paying so much.