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Confused on what meds to use.

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Ulcerative Colitis
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Posted 4/2/2013 4:46 PM (GMT 0)
I have not posted in a few months and when I last did I was not in a very good place. I have had three hospital stays and four visits to the ER sense them. I am now dong so much better. I was put a low dose of Prednisone and that has really helped so much. I went in yesterday for a colonoscopy and my colon looks way better then it did when I was diagnosed in 2009. My GI Doctor said it looked better then he thought it would. The colitis is in my sigmoid and left sided colon. I am not very inflamed and there is little redness. The Prednisone has taking away my urgency, pain while going, nasuea, diarreah, bleeding, gas and cramps. I feel so much better. I feel like me again. I can play with my kids, I can run, jump etc... Before I couldn't. I am just so happy about this compared to where I was just a month ago.

My GI Doctor wanted to put me on Mesalamine enemas and when I went to pick up my prescriptoin they wanted 2100.00 dollars. LOL I was like um sorry but I can't pay that. So I called him and he is going to be finding something else for me to take. I am looking to get others experiences with different meds. I have eliminated things from my diet that I know flares my colitis. Gluten, dairy, wheat, rice, fried foods, and processed foods. Basically I am on a paleo diet but I will eat Organic gluten free items that are not processed or full of artificial stuff. I have also started exercising, yoga and meditation. I am on the mend. Has anyone else here had success with just changing their diet? Also I am looking into more information about supplements and what kind of supplements I would benefit from. I can't take iron it makes my flares ups worse. I have read about probiotics, fish oil and vitamin D being beneficial.

Any information that can keep on the road to good health is greatly appreciated. :)
Posted 4/2/2013 5:46 PM (GMT 0)
Unfortunately, ten different people will give you ten different answers. Everyone is so individual with this disease. Nothing comes with a guarantee.
Posted 4/2/2013 5:56 PM (GMT 0)
The generic mesalamine enemas work great for most people and shouldn't cost so much. Do you have some kind of high deductible policy? I would push back on that price with your insurer. The enemas are the best option to get you off pred. You should also take an oral mesalamine since your inflammation extends beyond the sigmoid colon into the descending colon.
Posted 4/2/2013 8:40 PM (GMT 0)
Yes Rowasa and sfRowasa can be expensive, but the generics have copays colser to $50/month (or less) - unless you have very odd insurance/formulary.

Your GI should be checking the GENERICS ALLOWED box, instead of looking around for something else.

Your pharmacist should have advised yo there was a generic, and offered to contact your GI to see if generic substitution was acceptable. Consider firing the pharmacist.
Posted 4/2/2013 8:54 PM (GMT 0)
I know you said you read about probiotics but I cannot say enough good things about VSL 3 DS. For me it worked miracles.
Posted 4/3/2013 6:55 AM (GMT 0)
That was the cost of the generic brand. He gave me a high dose and was wanting me to use it twice a day. Unfortunately I don't have insurance. I go in to see him tomorrow to discuss some other options as well.
Posted 4/3/2013 7:03 AM (GMT 0)
Hi...wow, how many did the pharmacy dispense for you?

I don't think you'd need more than one daily at a 4g dosage.

They are expensive, that's for sure.

What about steroid enemas?

q
Posted 4/3/2013 7:06 AM (GMT 0)
I will mention that to him tomorrow. He is such a wonder GI Doctor and he himself has UC. He is on Humira. I didn't want to go that extreme yet because I see that as a last option. This is my first time on any kind of meds for my UC. Before I just dealt with it. But I can't continue to do that so it is time to take care of myself so I can live a fulfilling life.
Posted 4/3/2013 2:36 PM (GMT 0)
I suggest Boswellia and Turmeric. Those are my "maintenance meds" since I can't take mesalamines.
Posted 4/3/2013 2:39 PM (GMT 0)
You should go on the resources thread and see if there is patient assistance for any of the enemas.
Posted 4/3/2013 2:45 PM (GMT 0)
If not mesalamine enemas, I also recc. maybe the steroid ones. I assume they would be cheaper although I don't know for sure. Glad to hear that you made so much improvement.
B
Posted 4/3/2013 3:17 PM (GMT 0)
yes, people here have improved by changing their diet - it just takes time to find out if it will work - try not to make too many changes at once -

gluten can take months to get completely out of your system and allow your body to heal - but you should see improvement in a few weeks if you have a problem with it -

i have eliminated ALL grains -

Posted 4/3/2013 3:42 PM (GMT 0)
My insurance stopped paying for prescriptions last summer, and so I had to pay for generic mesalamine enemas out of pocket. They cost $170 for a 4 week supply. You need to talk to your doctor and your pharmacy about this--they absolutely do NOT cost $2100. The only thing that might be happening is that the enemas sometimes come with kits, like ... with wipes. But I doubt those could even inflate the price over 10x.

Point is, I know exactly how much generic mesalamine enemas cost per month, and it's less than $200.
Posted 4/3/2013 4:32 PM (GMT 0)
Thank you for all your responses. I will talk with him more today. The cost did seem very extreme to me as well. He does have some free samples for me of a steroid sepository that he said he has seen success with. I am very grateful because he is not charging me anything he is seeing me for free. I will add some Turmeric and Boswella and I am adding fish oil too. I am taking the diet changes slow and really listening to my body and only eating things that feel right to me. It has taken a lot of work to be able to really listen to my body the last few weeks but I feel it is really important.
Posted 4/4/2013 1:19 PM (GMT 0)
He gave a months worth of free samples of Canasa suppository. Last night something I ate or drank flared me up instantly. I was Distended, bloated, and running to the bathroom passing blood and mucous. This hasn't happened for about two weeks now sense being on Prednisone. I was in so much pain so I took a Percocet then went to the bathroom and inserted the suppository and within two hours I was able to go to sleep and woke up and feel so much better. Has anyone else ever experienced instant relief from these before?
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