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need some treatment advice to get off the prednisone during a flare

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Ulcerative Colitis
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Posted 6/23/2014 10:27 PM (GMT 0)
I have an appointment tomorrow with a new GI. I have been on the same meds for so long that I am now prednisone dependent (in my opinion) as I have been on it waaay too long. I want to treat my left sided UC but don't know much about them, and I want to get off this pred but do not want to commit to the next level of "for life" medications or injections as I was diagnosed with mild all over UC in 2003. I currently have a hot spot on my left side and my mornings are pretty loose, with mild blood. After my 2 hour morning session of about 4-5 bms with 2 having actual substance, I go to work and pass some pink mucous a couple times because of gas and urgency. I am on 30mg's of pred now, 20 in the AM and 10 at night. I have tried mezalamine enemas but after 2 days in a row, multiple times, each time I felt worse or had more cramping. Also take 6 Asacol HD pills daily and on lomatil and bentyl for urgency/slow my system down. I take a multi vitamin and try to stick to an SCD diet, but really try to keep away from sugars and starches/carbs. I eat meats, fish and salads.

Like I said, I want a plan of action with my new GI, but I have been out of the prescription drug research for so long I am a bit out of touch. I don't even take probiotics or supplements. The last time I was in remission I was taking pred, 6mp and I think a colocourt enema got my lower half settled after a 2 week prescription. I think I want to use a colocourt enema again because I wake up at night and have a bm of mucous. I don't get much sleep so when I have to wake up, it ruins what sleep I do get and I feel like my rectum area is inflamed. I asked a GI for a prescription and he said they don't make colocourt enemas anymore. I said that to my new Primary and he had not heard it then referred me to my new GI that I see tomorrow

Any thoughts or suggestions on med plans or even natural plans as I am really open to trying natural remedies. I need to get rid of this mucous because I am tired of going to the bathroom every time I have gas not knowing what will happen. Plus I want to get rid of the urgency.
Posted 6/23/2014 11:46 PM (GMT 0)
30 mgs of pred is pretty high, but I didn't catch for how long you have been on it. Either way, you need to get off it, the sooner the better. The steroid enema is Cortifoam, and if that is what you had, they still make it. You might have some luck if it is primarily your rectum that is inflamed. You must get the inflammation down, or you will do further damage. You may be alergic to the sulfites(sulfa) in the Melsalamine enemas.
Most doc's work from the easy ones- like 5 ASA's to the immudulators(like 6mp/Imuran ) then to the biologics( Remicade, Humiria) If you are trying to get off the pred, they may start you on the 6mp soon, so that it has the 2-3- months it needs to get up to therapeutic levels in your system. I would jump to the biologics rather than continue to suffer-the safety profile is quite good for Remicade.
As far as natural and diet based support, many here have been helped by different approaches. It is mostly trial and error. You may keep reading and stumble upon a diet that works for you. We never hit the right notes there.
Posted 6/24/2014 12:09 AM (GMT 0)
I am not too sure who asked you to split Pred dose. I wonder if you really manage to sleep.

Second thing, are you refractory to Pred? Does 30mg work, doesn't look like it from the BM consistency you mention. You need to check that.

Plan of action, frankly, there is none. Every person here is different and different things work with different folks. When I was new here, I didn't post anything for 2 months. Only ran through the old threads and gathered so much info that I made my own action plan, discussed with GI and got onto it.

Meanwhile, if you just want a relief from oval office visits, look into Bentyl. It works like charm with me (not with everyone else).
Posted 6/24/2014 12:31 AM (GMT 0)
The best way to get off pred is probably just to continue tapering down at a slow rate. If you've been on it for a while and you're still experiencing symptoms, it's not doing what it's supposed to be doing. You don't sound like you want to continue steroids so I think you should continue the taper and get off pred and find another solution. Something you may want to try, is Uceris. Though it's technically a steroid, it is released specifically in the colon and has much less side effects. It may even help you more considering you have left sided UC. You may be able to combine it with pred to get off without going into a terrible flare up. As for moving forward, there are a lot of medical and alternative options. Just depends what you want to try. I haven't had much luck with diet, supplements or probiotics but other people do... If you were on pred last time you were in remission, I am not sure that's truly remission. I think remission is when you're off pred and maintaining with other medications :(
Posted 6/24/2014 1:25 AM (GMT 0)
You should have never been on prednisone for this long, however long it has been. You only become pred dependent if you allow yourself to. If pred doesn't bring you to a total and complete remission where you can allow other drugs to keep you in remission, then you need to get off it completely forever and do plan B. Staying on pred long term should never be an option.
Posted 6/24/2014 1:29 AM (GMT 0)
Thanks for the info, it's always good to hear from other uc'ers. I have been on pred straight for about 2 years so just tapering down is not, had not worked. I get down to 20mg and start to bleed and mucous then go back up to add high as 40 then it goes away and a star tapering again. When I was in remission, I was off all pills except for asacol. I'm wondering what the least invasive to most invasive ways to get of pred are. I have done some research and was almost in the uceris clinical trialyears ago but dont know if I start a specific pill, will I have to be on it forever etc.

Example pred and imuran, if I do great and get into remission, do I still have to stay on imuran?
Posted 6/24/2014 1:33 AM (GMT 0)
Yes. You have to take some treatment forever or you will flare even worse and what worked before often does not work again, or work as well. That's why you have to stay on some treatment plan forever so that does not happen. You can't take pred long term but you can almost everything else.
Posted 6/24/2014 4:32 AM (GMT 0)
isotired,
I'm in a very similar situation as you are. I'm on 30mg of pred and every time I try to taper I feel horrible. Since end of April, I'm also on Delzicol which is similar to Asacol. It's not helping IMO. I'm fat, swollen and in pain all the time.

I've noticed some things regarding my diet: cucumbers seem to help, steamed or sauted summer squashes seem to help. Today I started juicing fresh veggies and I seemed to tolerate that, unless I use carrots. Carrots make me sick, I've discovered.

I also seem to feel better in the morning BEFORE I take my prednisone. When I forget to take it, I seem to feel better for a longer part of the day. On the other hand, if I take lower dosages, I feel worse than not taking it at all. So today, I didn't take it at all. I've heard that quitting cold turkey can kill you, so I will probably take 30 or 25 mg tomorrow. There is a risk of our UC getting worse without Prednisone, since the other drugs aren't working and the diet isn't either.

I understand your hesitation about starting a drug that will keep you on it for life. That scares me too, so I'm working on getting the diet right. But the truth is, if diet is going to help, it's going to help very slowly. Natural remedies are that way. So it may take years of patience. I'm not sure I have that kind of patience any more. I've been on pred since last February and I'm really, really tired of the side effects.

Anyway, I'm not offering any advice because I'm still very sick and have no idea what to do. But just offering support and letting you know I can relate to your situation. Keep us up to date on what you decide.
Posted 6/24/2014 2:53 PM (GMT 0)
You need a plan to get off the pred, it is not a maintenance drug. You too seaskyline! And don't mess with your dosages like that- skipping a day or deciding some crazy taper schedule. If you are on it more than 2 weeks you need a taper schedule. Get from your doc or info on this site. And yes, UC is chronic and the meds are needed to keep you in remission once you get there. Neither of you is close, and you need a GI's plan ASAP.
Posted 6/25/2014 3:59 AM (GMT 0)
You get off pred when your out of the flare. Qing Dai helps, removes inflammation, requiring less from adrenals. Wheat grass powder helps..when bleeding. Get blood stopped. Reverse flare. Taper off. Stop Qing Dai after a couple more months.
Posted 6/25/2014 4:26 AM (GMT 0)
I just finished tapering and while I was tapering I did notice blood and mucous, but I just kept with my regimen. I have more bowel movements now that are very soft with a little mucous, but I feel better now that I am off of the predisone. Predisone gave me black tarry stool which made me uncomfortable now it's a normal color. I really do not like predisone I do not know how one could put up with such crazy symptoms for so long. I was only on predisone for roughly 3 weeks.
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