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Employer trying to stop Colazal coverage - Old Hat where are you?

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Ulcerative Colitis
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Posted 10/4/2016 9:11 PM (GMT -5)
Hello,

I haven't posted in a while since I discovered that my UC and horrible neck pain (and other issues) were due to lyme and coinfections, including brucella, bartonella, ehrlichia, babesia, mycoplasma, and a positive stool test for proteus mirabilis. None of my MD doctors care or admit any of the above info, but I have started treatment with a lyme literate doctor and have already had significant improvement on several symptoms. Since starting the treatment, which includes a quality strep-free probiotic, my bowels have been really good.

Sometimes I wonder if I will even be able to stop treating my UC, but with antibiotic treatment for lyme and coinfections looming, I do feel I will need the anti-inflammatory UC medication eventually.

I work for one of the largest cities in the US and they have been cutting my benefits for a few years now. Today I received a letter from the healthcare management company that informs me that they will stop covering my brand name Colazal. Is anyone here still on brand name Colazal? I know since Valeant took over Salix there had been some supply issues.

The letter informs me that my doctor may ask the company to "consider approving coverage."

The list of alternatives includes:

Apriso
Lialda (tried it and had some weird side effects - foot pain and massive Gas problems)
Pentasa
Balsalazide (tried it for 2 years, HORRIBLE IBS symptoms which I suspect due to cheap chinese pharma fillers, gluten, shellac, who knows what else)
Sulfasalazine, Sulfazine/Sulfazine EC

If you read this far, thank you. I was wondering if this is a new nationwide trend, and if brand name Colazal is going the way of the do-do bird. Is anyone still on it? Have you had to fight to have it covered or locate supplies? Also wondering if anyone has any feedback on whether any of the above alternative meds are safe or similar to Colazal?

Thank you guys, and I obviously recommend testing for lyme and coinfections with a lyme literate doctor if you have UC based on my current experience.

doors12
Posted 10/6/2016 6:17 PM (GMT -5)
Hi, Doors! We heard from MNBeachgal a while back that her insurer was dropping coverage of brandname Colazal; you might want to read her archived posts. She is changing meds now because of that. The major issue seems to be that Valeant Pharma has tripled (or more) the cost of brandname since it acquired Salix in 2014. I'm waiting to hear what's in store for me in 2017 ... (fingers crossed)! A couple months back I asked my gastro's social worker whether she had heard anything about coverage denials & she replied that she had. In 2012 we got major support from Jennifer Jaff at Advocacy for Patients with Chronic Illness to get brandname restored to production; she later died untimely & her organization folded last yr. For now probably the best you can do is ask your doctor to challenge the denial on grounds that the other 5-ASAs don't work for you. / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/29/2016 11:32 PM (GMT -5)
Thanks Oldhat! Sorry for the delay in getting back to the thread, I have been so busy.

I asked my GI to fight the denail. Meanwhile I go forward with the lyme and coinfection treatment, started an antibiotic treatment of Alinia today and feeling really good so far with everything...

I think they should make a sticky on the UC board with info on lyme and coinfections because it is starting to seem that my former case of UC was really a symptom of lyme and coinfections.

Oldhat - I hope that you don't encounter any disruptions since I know that Colazal has worked well for both of us...brandname that is! Good to hear from you!


-Doors12
Posted 10/31/2016 1:37 PM (GMT -5)
Hi Doors, Old Hat is correct - I've now had to stop brandname Colazal after 10 years of using it and am now on Lialda as of a few weeks ago. It's a little hard to tell if it's working the same as I've recently had a great deal of stress due to my mom having cancer and not much time for her left. But I've been able to reduce my stress a bit and I think I'm doing ok on the Lialda. I'm going to keep on it for awhile and change to generic Colazal if I get any worse.

The price of brandname Colazal did drastically increase. But even before that, I had some issues even getting it from the manufacturer as they would randomly just stop producing it. Once they started again the price seemed to skyrocket. Seems to me as though they don't really want to keep making it, and are hoping people will just stop using it.
Posted 10/31/2016 4:14 PM (GMT -5)
Doors12 & MNBeachgal, thanks for your updates and please continue to keep us posted. FYI, I recently got a shipment of brandname Colazal thru Expressscripts; the bottles have 12/2020 expiration date. That's good news considering that I received a lot of 2017-expiring caps in recent years! Best wishes for you both to feel /function well. / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)
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