HealingWell
Search Close Search
☰

Prednisone taper not working, no med insurance, up the dose?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/6/2013 9:53 PM (GMT 0)
To make a VERY long story short, im glad to be a part of this forum, I have been suffering with UC since 2001 and have typically followed a pattern after initially getting my first severe bout under control, of about 3 months out of the year in pain then remission for 9 months then flare etc. I am in the middle of another flare, it is so weird that I have dealt with this many many times, but every time it happens its like the first time, I don't remember exactly what dose of prednisone (which I hate taking) and asacol (which I swear does nothing) works. To be honest, most of the time when I go into remission i stop taking everything and I am usually fine.

This time around I was trying to make my body more alkaline with a friend who is fighting cancer by drinking a baking soda and molasses cocktail. The very next day I saw those o-so-crappy signs that my UC was on its way back. I have no health insurance and have spent a fortune just get seen and prescribed 2 weeks worth of asacol ($230!!!!) and a diagnosis from a non specialist doctor to do 60mg for 3 days 50 for 3 days 40 for 3 days and so on. I was scared of such a high dose tho I may have been on 60 in the past. My question is, I chose to do 40mg for a week and down to my current level of 35mg for a week and so on. I am still bleeding, should I up the dose? Also taking two asacol three times a day. Thanks in advance to all who have suggestions.

THL
Posted 1/6/2013 10:09 PM (GMT 0)
Hello and welcome! I am so sorry you're dealing with the dreaded UC. You've come to the right place on the positive side. It sounds like you're dealing with a pretty rough flare up. Do you have a regular GI that you've seen in the past who may take it easy on your as far as price goes? My GI always takes care of me if I am between insurance because I've been seeing her for many years... You may have luck finding some sort of GI clinic if you're in a major city? As far as medication goes, there are patient assistance plans. Asacol used to have a plan through p&G but I believe it ended. You may have better luck taking a different mesalamine like Apriso or Lialda and getting into their programs, often uninsured people can get the medication for free. The first and most important thing is that you can get seen by a GI who will give you samples and work with you to find the right medications. This illness takes a lot of trial and error and in the beginning, i think we all dealt with a ton of ups and downs, it can take a long time to find what works for you. Some are luckier than others too, some respond to Asacol and see quick improvement and have no need to move on to other meds.

I hate to say you need to take drugs but maybe if you had stayed on your meds for maintenance, you wouldn't be flaring up again? It's great to be medication free, believe me, I get that but it's believed by many specialists that staying on the medication can give you longer periods of remission. To be honest, I doubt the crazy baking soda cocktail gave you the flare up. It's easy to get into the thought pattern that "something" caused you to flare up but what I've come to notice is that UC flares regardless of what I ingest. It's an immune response and I am not sure a whacky baking soda drink would cause that to happen. It sounds to me like you've been up and down and it hasn't been 100% under control if you're flaring 3 months out of each year... I think it's time for you to team up with a good GI and figure out your options.

As for right now, the options are tough without insurance. 60mg is sometimes required to get people into remission. Sometimes a longer period on 40mg will help things to resolve. I don't think 3 day taper is enough if your colon is in moderate to severe shape. You really need to speak with a professional but without insurance, i realize that is tough. You could try alternatives, diet, LDN is inexpensive, fecal transplant... Not sure what you've tried in the past or what you're open to.
Posted 1/6/2013 10:23 PM (GMT 0)
Thank you for the quick response. You are right, I should have been in the habit of staying on my meds, I would just feel so great that I didnt feel I needed the crutch anymore. I am about to run out of this short supply of asacol I was prescribed and am trying to get another refill from the urgent care place I went to. I sent in the low income form for Lialda on friday. Any Idea how long it takes to actually get meds? I am guessing a few weeks? I will have to just find a way to come up with the $$ to see a GI, maybe I will try to contact my old one, that may be more beneficial that the route I am taking now. I am worried I am about to run out of meds already right in the thick of a pred taper. Should I try 50mg for a few days if its been two weeks and there is still alot of blood? Thankfully the cramps are gone and I go alot less but I still have bloody stool.
Posted 1/7/2013 12:09 AM (GMT 0)
The first time I applied for free Lialda, there were some issues which delayed the whole process to longer than a month before I received the pills. When I had to renew the next year for free Lialda, it took about 3 weeks from the day of faxing the info to ShireCares and me receiving the pills.

Best of luck. UC is a crappy disease!
Posted 1/7/2013 12:21 AM (GMT 0)
 

THL -

free to good home - asacol hd - e-mail me if ya want it -

Post Edited (soystud) : 1/6/2013 7:23:23 PM (GMT-7)

Posted 1/7/2013 6:37 AM (GMT 0)
OMG if you still have it yes please! I am in quite a pickle with coverage and finances and need all the help I can get, I shot you an email. This would be a godsend!
Posted 1/7/2013 10:32 AM (GMT 0)
You should be seeing a GI. As for the pred, if a dose doesnt work after a few days it prob wont work at alk and the dose should be upped. No more than 60 though.
Posted 1/7/2013 11:45 AM (GMT 0)
Hey there ive been on prednisilone for over a year as they cant get me off them its got to the point now that they arnt working so i may now have to havensurgery and im only 20 years of age! I hope you find something that works x
Posted 1/8/2013 10:34 AM (GMT 0)
Jasmine, I am really sorry to hear that and I am over here wishing you the best. Make a decision soon that will allow you to get off of that prednisone fast please if you can! I was the same age when I was diagnosed and I was lucky that It eventually put me into my first remission though I was on it for a good amount of time as well. I always said I would rather die than lose my colon and have to use the assistance of the pouch, but now that I am older and have seen how my stable life can quickly turn to chaos when I come out of remission, researching the j pouch has become an actual thought for me. Still not sure If I could do it but time will tell. I pray I can go into remission soon and I hope that you can find relief soon too Jasmine-x-x.

Marinebanjo, thanks for the info about the shire cares turnaround time! Thats exactly what I was looking for. Helps me plan out some alternatives for the meantime.
Posted 1/8/2013 1:11 PM (GMT 0)
take a look at goodrx.com You will save good amount. My insurance is such a load of crap that I pay more than goodrx.com prices.
Posted 1/8/2013 4:18 PM (GMT 0)
Aww thanknyou well i saw my doctor yesterday and thry refering me to a surgeon as tablets aint working for me and i always said i wouldnt have surgery but when ive put 3 stone on just coz of steriods i feel pants about how i look but i kno it will all go once im off them but the onky way off them is to have a bag and when i have a 2 yr old i need to be fit and healthy for her and wantin kids in future.... i just want my life bak and fed up of bein tired and grumpy all the time so colon away it is :-( hope you eork somehing out asni wouldnt wish it on anyone x
Posted 1/9/2013 7:00 AM (GMT 0)
I completely understand what you mean about wanting your life back!!! This disease cripples you socially. One good thing is that you know who your real friends are (if any are left) thats for sure.
Posted 1/9/2013 10:57 AM (GMT 0)
Im assuming with no insurance Remicade and Humira are not options. What else have you guys tried? Diet changes? Enemas? I know what youre going through a few months back I was being pushed toward surgery too which is a NO-NO for me at only 22. Hope you guys get better quick!
Posted 1/22/2013 6:05 AM (GMT 0)
Madcat, I was able to get an appt with a gastro in the next few weeks and hopefully my first colonoscopy in the last 5 years after that (very scared!). The pred and asacol isn't working for me like it has in the past, its kinda just halfway working. I have adjusted my diet alot but I still sway now and again and cant seem to find a pattern between what I eat and the pain I go through at night. I did just start VSL probiotic though, hopefully something miraculous happens. I think the enemas might serve me well, just have to work through this bad government funded health care while im out of a job to get things done and paid for. I tried to call my old specialist and I couldn't even afford one visit with him! :(
Posted 1/22/2013 11:44 AM (GMT 0)
"I have no health insurance and have spent a fortune just get seen and prescribed 2 weeks worth of asacol ($230!!!!)"

Thoughts

1) I have been getting a generic Asacol/mesalamine (Novopharm's Novo-5-ASA) from various Canadian online pharmacies for about ten years. Typically $50 or $60 per 100 pills (400mg each).

Prices have spiked up a bit ($70 - $80) as we get closer to Asacol's patent expiration in the US - in July 2013.

That patent expiration doesn't help now, but hopefully a low cost generic Asacol/mesalamine will become available in the US around July 2013.

2) You could try psyllium (basically the active ingredient in Metamucil and similar products - check labels). The psyllium powder is mixed with water for drinking and then forms a slurry/gel in the body that seems to help some UC sufferers with their symptoms.

Why exactly is unclear (some theories are that dysfunctional digestive chemicals get captured/normalized by the gel, other theories are that the gel helps nourish cells lining the digestive pathway).

The psyllium gel is completely excreted so side effects are pretty rare.

My personal experience is that the psyllium reduces my pain as much as mesalamine does.

3) Although research evidence is scarce, I personally have had surprisingly good results with melatonin (lucked into results purely by chance). I take 3 1mg pills of the Walmart/Spring Valley brand (which includes B6).

Research papers on Pubmed indicate that melatonin increases bicarbonate excretion in colon - perhaps neutralizing dysfunctional digestive chemicals.

As both psyllium and melatonin are very inexpensive OTC products, they may be worth trying if you lack other options.

Good luck.
✚ New Topic ✚ Reply