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Posted 4/14/2009 5:14 PM (GMT 0)
Dear fellow crohnies,

I am a long-time member, but I periodically disappear because it makes me feel that I am normal (when I am really not). But, I have a question for all of you. I am 15 mg pred every day besides Pentasa. I have been on and off Pred for three years now. Now, my GI thinks that the only drug that is working for me is the Pred. I am effectively pred dependent. Every time I drop the dosage to 5mg and below I have a relapse (major), which requires hospitalization. I have had several hospitalizations the last 4 years (at least twice a year).

Anyway, my question to those of you on Pred, how long have been on it and what is the lowest maintenance dosage that works for you. I am deciding whether to stay on Pred (low maintenance dosage and go to the hospital if there is significant worsening) or shift to Humira or even go the route of elective surgery (which my GI is strongly against).

If you could share your experiences regarding Pred or anything else, it would be great. Thanks.
Posted 4/14/2009 5:48 PM (GMT 0)
Hi Iram Was wandering why your Dr. id against surgery? I found 5mg's helped when I was on it. I couldn't go the sideeffects and ended with blockage and resection. How are your sideefeects on the pred.? I know it can be a big decision to make about meds.. I will say I was glad to have the esection. lol gail
Posted 4/14/2009 6:12 PM (GMT 0)
My GI says that Chrons will come back in few years. He is argument is that we can't keep cutting the bowels out, besides surgery could produce other complications and once they start on the path of resection, eventually I will run out of guts to absorb nutrition.
Posted 4/14/2009 6:40 PM (GMT 0)
I think many folks have had success getting off Pred by using meds such as Humira. I think I would give the Humira a try and see if you can get off the Pred with it. If not, you might be better off having the bad part removed. I know there is a longtime Crohnie who rarely posts but is maintained with 5 mg of Pred a day. Have you had any other resections before? Good luck!
Posted 4/14/2009 6:48 PM (GMT 0)
Hi Iram, I took prednisone for 18 months, when my doc tried to wean me, illness came back when I was between 7 and 5mg a day. Am corticoid dependent...Doc switched me to Entocort that has less side effects and works only in the gut. Really helped, took it for 2yrs, now stopped to breastfeed, but D is back, can sense I will have to go on it again and use formula cry
Posted 4/14/2009 7:18 PM (GMT 0)
Thanks joohana, I was also on Entocort (adjusting dosage between 6 and 9 mg). I might go back to that and do 6 mg of Entocort and maybe 7.5 mg of pred. Sometime in the near future I am going to have check with an endocrinologist to check on the side-effects of Pred. The good news is Pred works for me, the bad news is that it is Pred. I am severely allergic to Immuram (pancreatitis). Eventually I might have to go on biologics (no choice there, but it seems even that it is a short term solution).

God help us all!!
Posted 4/15/2009 12:12 AM (GMT 0)
Hi. I'm currently on 12.5mg of Pred, and supposed to try tapering down to 10 this week. I flared pretty bad last time I tried to go down to 10 (about a month ago). I've been on Pred since December, and my doc says I can't stay on it much longer, even at a low dose. She said I could try tapering one more time, but otherwise I would have to add a new drug to get off the Pred. The 3 options she gave me were: 1) Imuran/6MP, 2) Remicaide/Humira, and 3) Methotrexate. I'm going to be starting Imuran soon (which I'm not thrilled about, but am coming to terms with), which I see you can't tolerate, but have you considered Methotrexate?
If your GI is anything like mine, they won't let you stay on pred or have surgery unless you've exhausted all of the other options. I think the problem with the surgery is that if your Crohn's isn't really under control, it's only a temporary fix, and the inflammation will just start coming back again afterwards.
Posted 4/15/2009 2:45 AM (GMT 0)
Thanks lenagirl for your feedback, I am increasingly leaning towards Humira/Remicaide. Methotrexate has not been offered as a treatment choice so far. I am trying to arrange for some 2nd opinion next month depending on what I hear I might go the route of biologics and wean away from predinisone. I have been scouring this forum for info on humira.
Posted 4/15/2009 5:12 AM (GMT 0)
Ugh I just started prednisone 10 mg a couple weeks ago in the hospital and I haven't been able to start tapering yet. Reading this worries me, I don't want to flare again and have to go back to the hospital.. I'm also on weekly humira and entocort 9 mg. I was doing tons better until yesterday when I took a laxative that totally messed me up and gave me severe pain and diarrhea, almost had to go to the ER. Things are better but I'm still in pain and my RLQ pain came back which also worries me. I'm afraid that when I take the pillcam test that the pillcam might hurt so bad going through that part that hurts, the terminal ileum which has some narrowing as shown on a small bowel x-ray. I talked to the Dr. but he said I should be fine... that's what he said when he took me off of the imuran and I was in the hospital all last month for a horrible flare!!! Sorry to ramble on.
Posted 4/15/2009 7:47 AM (GMT 0)

I feel your pain. I have been on prednisone continously since August. I felt frustrated and flared when I tapered down 20mg, so I took evasive action. I got started on cimzia, finished up my 3rd loading phase, and feel it is starting to work. I will give it one week to fully take effect. Also I asked my Dr to prescribe some flagyl to help heal the fistulas...good luck. Ben

Posted 4/15/2009 12:43 PM (GMT 0)
My docs biggest concern with prednisone is that it will lead to bone loss in the long-run, but overall the drug keeps me very normal for the most part. Toxicology reports suggest that the side effects of pred are far less worse compared to some of the effects that these biologics can have (cancer, lupus, etc), which is the reason I am hesitating on biologics.
Posted 4/15/2009 2:29 PM (GMT 0)
I am currently using a maintence dose of 2.5mg. But I have been feeling mostly good the last couple of weeks...Avoid surgery as long as possible..Humeria may work for you. Humeria turned my skin to tissue paper and I was constantly bruising and developed liver spots, I could not take it any more so I stopped the humeria becuase the side effects were worse than the cure. Pred has cost me my teeth but not my bones. My teeth crack and break so I am constantly at the dentist. These drugs effect different people in different ways you have to find what works for you. I don't always do what the doctor says because over the years I have detremined what works for me. What works for me may not work for you. Oh about the surgery. Ask your doc if you have surgery once does it mean another sugery in seven years (that is the pattern for me).
Posted 4/15/2009 4:18 PM (GMT 0)
I've been on prednisone since January but for arthritis, not any gut issues.  We started with a 5 day taper, but seems like everytime we got down below 10 mg or so, it got worse and we had to try a longer taper.  I'm also on Humira and sulfasalazine (since January also, should be time for it to kick in) but it seems that nothing else is keeping the arthritis under control.  I see the rheumy next month and will tell her that I'm ready to give up on sulfasalazine if it isn't helping by then and try methotrexate with the Humira.   

Posted 4/15/2009 4:47 PM (GMT 0)
Been on Pred since my early 20's steadily.(35 now) There were times I was able to go off of it for a while, up until about age 25, then I just could not get off it, without having crohn's symptoms which would destroy any quality of life I had.

The lowest dose that works for me is 15mg every other day. That dose includes taking 100mg of Imuran a day to maintain.

Without Imuran it takes 20mg every other day for me to have some quality of life which is not full of Crohn's symptoms.

To give you a better idea of just how well I respond to Prednisone. In the past, when I have worked, I have upped my dose of pred to 20mg EVERY day, maxing out at 30mg every day, after about one month of work. After 2-3 months of this dose I would either have to quit my job, or I would have to take a leave of absence so I could get my prednisone dose back down.

I can't do those high doses anymore though. It messes with my sanity WAY TOO much in the form of panic attacks, waves of depression, suicidal thoughts, in short it's not worth it to me, I am able to make it on disability income.

I do ok at 15mg every other day these days, and will proably be going back on Imuran soon. I stopped it due to gallbladder stones, and gallbladder surgery.

The every other day doseage really gives me one day free from taking prednisone, and it is supposed to keep my adrenal glands from burning out, incase one day I am able to get off prednisone completely.(one can still hope)

P.S. I am quite glad that SSRI meds came out, I really benefit from taking celexa, it helps to keep alot of the depression, and other nasty mental issues from prednisone at bay.

smilewinkgrin
Posted 4/15/2009 9:21 PM (GMT 0)
Thank you fimk, ZenaWP, Homeboy, melissam24, and BENISONE. As I mentioned earlier nothing works (that is in oral medicine), I take Pentasa 500 mg tabs (2) thrice a day (not sure if this works). Prilosec as needed, probiotics, vitamin D, and calcium. In my case I can be without symptoms for several months and then it will hit me and hit very very hard, when it hits me there is no question that I have to be hospitalized for several days (severe pain 10 on the scale, violent vomiting, and feeling like a truck hit me). So low dosage pred works great, but the only problem is that the docs are not happy I am on it. They prescribe it reluctantly and I have started to stash pred around the house. Maybe will try Pred every other day, see if I can give the glands a break.

I am not sure if I have mental issues, I have sleep issues on high doses, it increases my appetite, gives puffy face (I don't care about it at all). Otherwise, I am not sure if there are other things that I have to watch out for. Maybe like Homeboy I am doomed to be on it for ever. I have severe anxiety issues, but that is related to crohns (hospitalization, doctors, long-term care, and taking care of my family, jobs, etc).

I have asked for a surgery consult, I recently completed a CT enterography which apparently showed thickening of bowel loops and more extensive involvement of the small bowel (in around the ileum). GI tells me it is about two feet. I am not sure if he said he saw strictures or blockages.


fimk: My GI is confident that statistically there is more enough evidence to suggest that Crohns comes back to the same location and 5-7 years is about the average length of the time. He says if you get anything longer than that then it is a miracle. His point is as same as you, put of surgery as much as possible and use it only when it becomes absolutely necessary.
Posted 4/16/2009 4:06 AM (GMT 0)
Hi Iram,
I have been stuck on pred for 6 years straight now. My lowest maintence dose was 5mg for the first 3 years then when I flared I upped it to 10mg and now cannot get below that. Im currently on 20mg awaiting Gastro to put me on Humira. I also had a resection Sept. 07 in the hopes that, that would help with getting off pred (had stricturing close to obstructing) the Crohn's has now grown back next to resection site so am back to square one and trying to find something that gets me through till Prochymal is approved.
Jo
Posted 4/16/2009 4:24 AM (GMT 0)
Iram,

I was prednisone dependent for roughly 2.5 years. I would always relapse about 3-6 weeks after tapering. Once relapsed, I would get put back on prednisone (btwn 40-60mg), and then taper 5mg every 1-2 weeks. After tapering, I'd relapse, and the vicious cycle continued.

I NEVER thought I would live life without prednisone. It was the ONLY thing that kept my body in remission. My doc then put me on Remicade and it didn't work right away. But, once he bumped up my remicade dosage I went into remission and have now almost been in remission for 7 months.

Like I said, I never thought I would have been in remission without the use of prednisone. I would DEFINITELY try humira or remicade. Remicade has worked for me, and hopefully you'll find what works for you soon! GOOD LUCK and please don't give up! You will eventually live a life without prednisone!!! =)
Posted 4/16/2009 1:00 PM (GMT 0)
SydneyJo and ilturbo I am pretty much in your situation, I can go for a period of time without pred, but once I taper the crohns rears ugly. Surgery is not a solution, immuran I am allergic to, so basically I just have biologics for now (that is only available for now), besides the pred. I was really hoping that the stem cell thing could open new solutions. But that seems very long way off. The biologics are not necessarily safe because of all the potential side effects it could generate (my GI is concerned about it).
Posted 4/16/2009 8:48 PM (GMT 0)
IRAM -

I've had severre Crohn's going on 55 years now, nine surgeries including 6 resections. In 1991, through my research, I decided to make pred. my maintenance drug. I take 5mgs of pred. per day. To keep my adrenal glands confused, I some times take 10mgs one day and skip the next day and sometimes I take 15mgs and skip the next two days. It worked, I haven't had what you would call major trouble with Crohn's since. Oh, sometimes I might feel something coming on, and I'll take an extra 20 mgs for a couple of days and that takes care of it then I go back to my regular schedule.

Why did I decided to do this. After the last resection, I had lost a total of 40 percent of my intestines. I knew from research that if I lost any more intestines, I would not be able to absorb properly anymore and that would cause a lot of trouble for me so I decided to take matters into my own hands,doctors had been trying to keep me healthy for 36 years with no success, I have done quite a bit of research on Crohn's in all of those years, so I decided I was going to depend on my judgement from then on.

I knew that probably the most important part of my body to combat Crohn's with was my Adrenal Glands. If they were working properly, they should be producing approx. 8.5 to 9.0 mgs a day of "cortisol". One of the most important functions of "cortisol" is to keep inflammation down in our bodies. Through research I discovered that sometimes Adrenal Glands get "fatigued" tired out so to speak and don't do the job they are supposes to do so I had mine checked and tested. It is a test (blood) that has to be done as early in the morning as possible, say somewhere between 8:00 am and 9:00 am in the morning because the early hours of the day is when your Adrenal glands do their producing. Mine checked out normal, so I knew they were producing the normal amount of "cortisol."

I then decided that the 8.5 to 9.0 mgs of "cortisol" was just not doing the job for a person with severe Crohn's so I told my doctors what I was going to do to experiment on saving the rest of my intestines and they agreed to my plan of 5mgs. a day of pred. as a maintenance drug along with the drug Azulfidine (500mgs a day). I stopped the Azulfidine about two or three years ago to see if it was still important to my maintenance and I've done quite well without it.
Posted 4/16/2009 9:39 PM (GMT 0)

IRAM - PART 2

     I accideltly cut myself off, so I'll  continue.

     The doctors and every one involved in my experiment were surprised but all were of the opionion that the pred. was sooner or later going to cause trouble in bone loss etc., but I again decided to stay with my research on that which was.  1. Crohn's feeds off of Calcium. and 2. Pred. also feeds off of Calcium so when I started on my maintenance I also kept up with my 1000 mgs or Calcium and Vit. D. so I've had no trouble there.

     So, my question to doctors now is this.  If pred. is really going to cause me a lot of trouble in my old age with bone loss and all the other things they worried about,  I wonder what they consider "old age"  My next birthday I'll be 82 years old, I lost my best friend and wife of 55 years about 4 years ago, and now, I feel so good I'm thinking about getting married again.

     So, my advice to you is get your Adrenal glands checked, make sure they are working properly, stay on good terms with your doctor so he will listen to what you have to say, and work together to fight your Crohn's.  What I did might not work for you like it did for me, remember most of us are different in how we react to Crohns, drugs, and just about everything else.  I've never really had any problems with pred. no side effects at all, but some people can't even take aspirin without major problems.

     Since I rarely post, got too many things going, let me tell you another thing or two.  Keep a positive attitude, don't let Crohn's or anything else defeat you.  I even turned down from my Priest "last rites" twice because I knew with my positive mind that nothing but death was going to stop me from the plans I had for my life, my wife and three children and now seven grandchildren and two great grand children.

     I retired at 61 after a very successful carreer, never having missed more than 10 days including surgery from work and was the top man in my  occupation for the last 25 years befor my retirement.  I owe it all to positive attitude, and a whole lot of research on Crohn's.

     Respectfully

    

    

Posted 4/16/2009 9:52 PM (GMT 0)
Iram,

Just wanted to give you one other option if you would like to hold off on the biologics. You could try enteral nutrition (special liquid diet used instead of regular food and beverages to induce remission in people with Crohn's; it's an old treatment). It can be useful in getting patients who are steroid-dependent off steroids (there are cases when it's worked in people who have been on steroids for years). What you'd probably need to do is stick with it for a month, or possibly six weeks, slowly lowering the steroids until you could discontinue them, while the enteral nutrition does its work. You then have the option of continuing to use the formula as a dietary supplement afterwards, alongside your regular diet, in order to help you stay in remission without resuming steroids. No guarantee that it will work, but it's pretty effective for people with ileal disease. Just a thought. Good luck.

Posted 4/16/2009 10:19 PM (GMT 0)
Writer, what formula do you use?
Posted 4/17/2009 2:24 AM (GMT 0)
I have used at various times Vivonex, Ensure, Boost, and Nutren. Looking at your signature, I'm thinking you might be in Canada, and I believe all of those options are available there. Some other good possibilities are Peptamen, Optimental, E028, Modulen (but not in Canada at the moment for this one), and probably a couple of others I'm not remembering at the moment. Basically, all the formulas seem to work, although some people will respond to one and not another. Unfortunately, I don't go into remission on any of them, but I am a very bad example because I have a chronic inflammatory disease with some Crohn's-like elements rather than a clear case of Crohn's. I got interested in the subject originally because I was looking for something that might help me. Even after it didn't, I remained enthusiastic because it seemed like this was such a useful treatment for Crohn's disease and (in the US at least) GIs so rarely mentioned it to patients. I ended up writing a book on the subject (not available yet), which is why I ended up knowing so many odds and ends about it.
Posted 4/17/2009 3:00 AM (GMT 0)
Yes, I'm in Canada. Thanks!
Posted 4/17/2009 3:28 AM (GMT 0)
Thanks again, Panayo, Writer, Rider Fan.... I have good news and bad news...The official diagnosis for me is fibrostenotic crohn's, I also have fistulaizing chrons (but currently under remission after seton surgery about 6 years back). Got the word today, I am actively doing research and I will open another thread on this. So, basically biologics is out for me because biologics only work for inflammatory crohn's. In fact there is no medical remedy (I can be off all drugs, including pred) that is what one of my doctors are saying. The nature of fibrostenotic crohn's is such that it could attack me any time, any day without absolutely any warning. No wonder I am having the sort of symptoms that I had described in the previous post. I am at a loss as what to do? Scrarring and stricturing in several locations more than three feet of the small bowels, hence surgery is not an option (at least elective surgery), surgery is a possibility only if stricturing leads to blockage (that is emergency surgery).

Just wanted to share with everyone...I am trying to get my mind wrapped around the problem and trying to figure a solution.
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