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Questions for you guys re meds and my dr.

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Ulcerative Colitis
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Posted 9/7/2015 12:53 PM (GMT 0)
I once again seeking your collective wisdom.
I started a mild flare in late May and did a course of cortenemas (daily for 2 weeks and every other day for 2) which nipped my flare in the bud and I felt great until 10 days ago. I was supposed to switch to sfRowasa but BCBS is refusing to pay for it. Gotta love insurance companies. I also went up to 4 lialda for 6 weeks and then dropped back to 2 according to my dr's directions.
Long story short about 3 weeks ago a very good friend was killed in a car accident and this seems to have brought on another flare. I saw my dr on Thursday and he suggested I go back to cortenema every other day for 3 months this time but to keep my lialda at 2 instead of bumping up to 4. When I questioned him about this he said it was because the in office scope he did (he used the longest of his rectal scopes which was nearly a foot long!) he said everything looked improved from the one 3 months ago but from the sound of things, something isn't right. My symptoms are mild increase in frequency (from once to 2-3 times a day) mucus and occasional pink blood in tp but none visible in the stool.
I am all for recital meds, but the steroids terrify me. I have 5 and 8 year old boys and teach college freshman. My immune system is crap and I always get sick anyway. Is it time for a second opinion in your view or should I just take my dr's advice and use the steroids for 3 months? He is wonderful, caring and really listens to what I say and always explains treatment and what he sees (does a little scope at each visit) well, but somehow I thought upping lialda would be the first course of action. TIA
Posted 9/7/2015 1:24 PM (GMT 0)
Hi there - UC aside, I hope you're well.

Upping the Lialda to a maximum dose while flaring is fine and mesalamines are a good long-term anti-inflamattory and antioxidant. Obviously I'm not a doctor but a course of oral steroids once or twice in a life-time isn't so much of a big deal. I'd say take your doctor's advice and use it as an opportunity to take the strain off your body, which is clearly in some distress.

If you read my posts, you'll notice I'm generally a fan of herbal therapies so there's no bias towards drugs going on here at all.

Unless you're unlucky enough to be one of those people who get horrible side-effects, you might find what I found while being on them - a big increase in energy and appetite. Take them first thing in the morning to avoid sleep disruption and do whatever taper your Doctor recommends. Hopefully, you'll find it gives your body the opportunity to heal and you can get back to normal life again.

Sorry to hear about your loss, I know you wouldn't have written it into your post if you didn't think it was significant. Obviously, you'll greatly miss whoever the person was and I don't want to sound preachy at all. Now might be a good time to look at whether or not losing this person has affected you negatively (e.g. was this person one of the few people you could confide in or who accepted you for who you are 'warts and all'?) If losing them makes you feel like it's left a few gaps in your life, now's a good time to look at ways you can look to meet others that help enrich your life in a similar sort of way. Again, I don't mean to sound preachy but I'm very aware that a huge aspect in our healing process is good emotional well-being. Apart from anything else, if we feel good on the inside then any physical issues we experience are better tolerated.

Kev
Posted 9/7/2015 1:38 PM (GMT 0)
Steroid rectals are the least systemic of steroids. True you should not be using them long term or face possible tissue damage but your doctor sounds reasonable and suggesting the least RX change.

Perhaps you could use him to fight your insurer for the sf-Rowasa which would be a great RX to use when this happens again (likely). Worth a try not taking their 1st no for their final answer.
Posted 9/7/2015 2:39 PM (GMT 0)
Any signs of flaring, stress or just feeling off, I up my Lialda to 4. The rectal steriods are not good long term as stated above but every other day for 3 months may not be too bad.

I too think you should try to get the SF Rowasa approved.
Posted 9/7/2015 3:10 PM (GMT 0)
I think you should go with what your GI suggests, he's being pretty liberal with how he wants you to use steroid based rectal meds, you likely won't get side effects from it, I was on cortifoam for as long as year before tapering off of them, never had any side effects, Cortifoam is the only rectal med that ever helped my proctitis (from crohn's disease) and it may just be what you need to do the trick for you, so try to be positive (I get your apprehensive, that's natural under the circumstances) and hopefully the cortenema will work out well for you....so sorry about your tragic loss, be well.
Posted 9/7/2015 4:41 PM (GMT 0)
Thanks for all of your opinions and kind words. It was my doctor who suggested that the stress caused this flare up. He actually told me to wait a few days and see how I am doing and if I don't see any changes to use the cortenema for 3 months every other day.
I have used them in the past, for up to 5 months, and they work but I get lots of side effects from them. Hair loss, night sweats, mood swings, all the fun ones, but they work!
My GP is actually involved in the appeal for SF rowasa now, from r some reason they asked for her input, so I am holding out hope that it will get approved. It is brutally slow.
Posted 9/7/2015 4:44 PM (GMT 0)
Just so you aren't too scared, I have been on steroids at least 10 times
Posted 9/7/2015 4:54 PM (GMT 0)
Yeah, I could live with the rectal steriods. Just another thought...what about using cortifoam? As long as the inflammation isn't majorly high it could work. I say this because Cortifoam has less steriod in it. I get side effects from Cortenema but do fine with Cortifoam. Hope u feel better!
B
Posted 9/7/2015 7:52 PM (GMT 0)
I would do the cortenemas the same exact way you did them before while increasing the Lialda back up to four and leaving it a four forever. Anytime there is added stress in your life you should up treatment regimen proactively instead of waiting to flare first. On a side note, can you take regular Rowasa instead of the SF version? Maybe that's the problem with the insurance. But, if it was the cort that worked so well before I wouldn't gamble with something different.
Posted 9/7/2015 9:31 PM (GMT 0)
I agree with others in this thread. Your best bet long term is to give rowasa a fair shot. They do have a "generic" rowasa you know. It's produced by Perrigo. It's not a cheap generic, but it's cheaper than rowasa. Don't worry, my GI didn't mention a generic either!

For your battle with your insurance company, if rowasa is the only UC med they don't want to cover, it might be helpful to remind them how much remicade will cost them vs. rowasa :)
Posted 9/7/2015 10:44 PM (GMT 0)
I have an allergy to sulfites, (see my signature) so regular rowasa is a no go. It is an anaphylactic response, and all of my medical team is aware of it. I haven't had a terrible reaction in a long time, but I can't have anything with sulfites in it at all, including dried fruit and grape juice and balsamic vinegar and of course, wine.
I would rather use the non-steroid version, but my glorious insurance company will only pay up to $860 for a script of SF rowasa that costs $1600. No pharmacy is willing to shoulder the loss, even express scripts said they won't distribute it at that reimbursement rate. I have spent hours on the phone with my dr's and insurance trying to get them to change their payout rate. The irony of the whole situation is that I switched to this plan because they said they would cover it. I really wonder who it is who makes these decisions, I see now why my GP feels like insurance companies are dictating how she can care for her patients.
Posted 9/8/2015 12:15 AM (GMT 0)
Yep. I had a casual conversation one day with my GI about how he has to treat all of his patients differently based on which insurance they have. He may know that the best treatment for one patient is treatment X but he has to prescribe treatment Y instead because of their insurance. In many ways it is not him treating his patients but the insurance companies and he says it is very frustrating. Sometimes I wonder why we even have doctors at all. A lot of time and money could be saved if they just had a smaller number of doctors and you would go to the insurance companies for doctor visits and the insurance company would make the treatment decisions instead of the doctor because that's often the way it is anyway. Just cut out the middleman - the doctors, although that would really suck.
Posted 9/8/2015 3:55 AM (GMT 0)
Ah, sorry, I didn't see that allergy in the middle of your sig. Well, I think I'll refrain from commenting on your insurance situation since you seem to be on top of your situation as best as possible.

Generally speaking, I think you just need to find a way to get on rectal mesalamine. Steroids just aren't a good long term solution. I wouldn't yet blame your doctor and try to switch. His hands are just tied. If you're already on oral mesalamine, and can't afford rectal mesalamine, all that's really left before the harsher stuff is steroids. If Lialda works for you, then it shouldn't be a problem upping it to 4 especially if you're flaring.

Now, I always find it interesting when flare symptoms are showing even when tests show improvement. It's possible the stress is producing some non-IBD related IBS symptoms. It would definitely be beneficial to resolve the stress asap, but obviously that's easier said than done.

If all else fails, I have one other suggestion, but this is really coming from left field. I'm currently hooked on a particular UC theory called the Radical Induction Theory. If you search for it here you'll find two huge threads by Old Mike. Here is a link to the theory: http://www.google.com/patents/US8476233
I bring it up because the author suggestions possible alternatives to mesalamine. From the paper:

"In one embodiment, a therapeutic composition of the present invention comprises a reducing agent. The reducing agent can be an agent capable of functioning intracellularly or it can be an extracellularly active agent or both. In an exemplified embodiment, the reducing agent is 5-aminosalicylic acid (5-ASA) and/or sodium thiosulfate and/or dihydro lipoic acid and/or alpha lipoic acid (ALA) and/or pyruvate."

Lialda didn't do much for me, so if I were in the position where my options were expensive rowasa, long term steroids, or biologics/immunosuppressants, I would really look into these 5-asa alternatives. I would study them individually to understand their safety/risks, I would pressure my GI to help me study them, and I would email the patent author for his input. I only bring this up because these are the only possible mesalamine alternatives that I'm aware of, and I really don't think you want to be on long term steroids or biologics if you can avoid it.
Posted 9/16/2015 11:54 PM (GMT 0)
I read several references to problems with long term use of steroid enemas. Could someone provide details? I do not know what are the risks.

Thanks.
Posted 9/17/2015 12:17 AM (GMT 0)
Does insurance have a mail order pharmacy ? Than you would get the drug because they have to supply it?

Also many medications have assistance programs associated with it
Posted 9/17/2015 12:47 AM (GMT 0)

Casey_LB said...
I read several references to problems with long term use of steroid enemas. Could someone provide details? I do not know what are the risks.

Thanks.

How long have you been on them? Steroids are a good rescue medication to pull us out of terrible uc flares, while other medications have time to reach therapeutic levels in our bodies. Generally, topical steroids thin tissue over time (irreversible) for steroid foams that's the rectum, and enemas go further to the sigmoid colon. A small percentage of a rectal steroid is systematic (around 10 percent) and, as such, any dose steroid over the long-term can cause permanent damage elsewhere in the body (glaucoma, type ii diabetes, osteoporosis). What is long term? It's highly subjective. As a general rule, try to be on steroids for as short a term as is possible. Damage can happen after 6 months, a year, or more of continuous use (varies person-to-person). Lower doses of steroids are generally safer but not completely safe. If you're on steroids for long then your uc treatment clearly isn't working. Time to either try stronger uc medications or doses to get off of steroids.
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