Can't get off of the pred :-/

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MelissaM24

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Sep 14, 2011
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After 1 1/2 years I am finally down to 2.5 mg of Pred, and I also take weekly Humira shots (yep, weekly!), 9 mg entocort, 50 mg Imuran and 100 mg Allopurinol to help the Imuran. I still can't eat any raw veggies, nuts, beans, broccoli, skins, seeds, whole grains, you know... all that healthy stuff I just can't tolerate! So here I am 60 pounds heavier, too tired to exercise and can't eat the healthy things I want to eat!

I also am still having symptoms, I have never been in remission since I've been diagnosed. Is this true for anyone else? Does anyone else have problems with getting off of the last bit of steroids? I want to be completely off of the pred. because I'm still on entocort, and I also have to get steroid injections in my spine for a bulging disc/arthritis. I have so many side effects STILL from the steroids (weight won't come down, high blood pressure, hungry, insomnia issues which are getting a little better, stretch marks almost EVERYWHERE, easy bruising, higher blood sugar, and some I'm forgetting).

Just wondering if I'm the only one who hasn't been in remission, who can't get off the steroids, and who can't lose the darn weight! Any replies would be helpful. Oh I am also having surgery tomorrow to blast some kidney stones into dust. I get chronic kidney stones from the Crohn's too, I guess because of the malabsorption of nutrients and all of that stuff. That's a whole other topic so I'll stay with the previous one!
 
Are you using 5mg tabs? Are you going to go for the 1mg tabs next (assuming you're breaking the 5mg in half). You're almost off of it. I was on it for over a year before too before my resection. Once you're off of it a lot of that weight should come off pretty quickly since its mostly water weight. I also unfortunately got a lot of stretchmarks from it as well. Took a long time to get used to them but honestly I still haven't fully accepted them and its been over 10 years.

Everyone starts having issues the second they try to go less than 10mg because our bodies get so used to it. You're almost off of it though! Luckily you wont have to worry about a taper like that with the Entocort.

Also, I'm in remission and all the "healthy" foods you listed up there, I've never been able to tolerate remission or flare. Another game plan would be smaller meals more frequently. Steamed veggies without the skins are still healthy. Seeds in general are just plain irritating and hard to digest. Also the more protein you eat the less hungry you'll feel.
 
If I eat anything that doesn't agree with me that day, which sometimes is even food that I think is "safe", I immediately start cramping all over my abdomen and have to go to the bathroom with the big "D". It hurts so bad and feels like my gut is literally on fire. Luckily the meds have kept me from having the bleeding so that is good, but man it is painful. And then my stomach is so sensitive for at least a week after I have one of those episodes. I think I would probably not have many symptoms if I never ate anything at all, but that's obviously not possible! Oh, I have IBS too so I wonder if that has to do with me never having a time where I've had almost no symptoms... So I think that's all for the symptoms that I have for the crohn's, not including the kidney stones and back problems and side effects from all the meds.
 
Crabby, thanks for answering! The reply above was for David as I hadn't scrolled up and seen yours yet. Right now I am breaking the 5's in half, and I guess I would need to see my Dr. again to get the 1mg's prescribed. I'm so nervous though because of what I wrote to David above. I feel like my body's not ready! I'm sorry that you can't eat those things either, but it gives me comfort that I'm not the only one! Oh, and I'm also on Klonopin and Ambien to help me sleep from the insomnia/anxiety of bad hospital experiences. I also take weekly B12 shots and have anemia, but iron bothers my stomach. I have a gentler form of iron I can try to take but I'm so nervous that I'll have a reaction to it and have to go to the ER! They tried an IV iron infusion once and I had the craziest allergic reaction.... my whole face & tongue swelled and I started throwing up everywhere, rash all over my arms, etc. it was very interesting... so I'm basically just always anemic. I can't eat the main foods with iron like spinach, because it has oxalates that form kidney stones, which my body creates tons of! I'm hoping to one day take this "chelated" iron pill and see if I can tolerate it.

Another crazy similarity, I have tachycardia. I've had all the EKG's, stress tests, echocardiograms, etc. and luckily there's no cause for it, but they said they could do that ablation procedure if I wanted to treat it. I said no thanks! But now that I also have high blood pressure from the prednisone, my primary care Dr. is sending me to the cardiologist again. Seems like we have a lot in common!
 
When was the last time you had tests that evaluated your stomach and small intestine? Endoscopy, capsule endoscopy, small bowel series, MRE -- something like that?
 
I had some small bowel x-rays a few years ago that were pretty normal... can't have the capsule endoscopy because I have narrowing in my terminal ileum and it would probably get stuck. I'm supposed to have another small bowel series, but it wouldn't change the meds I'm on so I feel like there's not really a point to it at this time. It wouldn't change my treatment; i'm already on everything!
 
I asked because pain so soon after eating points to stomach/duodenum and maybe issues in the jejunum and sometimes people haven't had those areas evaluated.

If you're in southern California and would be interested in a world class IBD group giving you another opinion to see if there's other possible ways to fight this, I might be able to get you in.

I just hate seeing you having so much trouble and worry about you being on prednisone long term :(
 
MelissaM24 said:
Seems like we have a lot in common!
Click to expand...

Indeed it seems we do! :D Although hopefully not too much as you said the medications don't seem to be working for you and that you have a narrowing. Same thing happened to me which is why I had to have a resection. At least it gave me a fresh start to control the disease and it induced a very long and still ongoing remission.

Best to have the upper tests (endoscopy and small bowel series) done anyway just to be sure that you're only dealing with that one area. I had to get them done before my surgery.

Do the slow release iron tablets do anything for you?
 
David, my grandparents live in the San Bernadino area of Southern California and I have checked out some drug trials that they're doing down there. I'm just not ready to commit to that sort of traveling unless I was doing a lot worse. I see two different GI's up here in NorCal and unfortunately neither of them have been that much help. One of them says "just stop taking the pred. now that you're down to 2.5 mg" and the other one totally understands that if I just stopped taking it, I would end up back in the hospital on the higher dose which would be the worst choice possible! I don't know why the other GI doesn't understand that... he's the one from UC Davis Hospital that's supposed to be the "expert". My case just seems so resistant to medicine, but luckily I haven't had surgery. I'm not even sure surgery would help my case, because I really do think I have serious Irritable Bowel Syndrome going on too. My mom has it really bad, but she doesn't have crohn's and she can eat certain things that I can't. I haven't had a small bowel series done for awhile, do you really think it would be of benefit? I guess I should... I forgot to mention I also started getting gallbladder issues (lots of pain) and had a test where they shoot the dye into the gallbladder... well, the dye wouldn't even go through. So they said I either needed to get it taken out or try taking a med. called Actigal which is basically bile from a bear. Yep, bear bile of all things! And it has actually seemed to help.

Who would've known that Crohn's can have so many other issues associated with it? Not me!

Crabby, I'm glad your surgery put you into a long remission. My narrowing hasn't seemed to bother me lately, mostly just all of the other symptoms that I explained above. There was a time where I had severe pain at the narrowing spot but it somehow got better.

I hope to get more involved in this board, getting advice, relating to other "crohnies", and answering newer people's questions as well about drugs that I've most likely had experience with! Every case is so different but most people in the world don't seem to understand that. Not that it's their fault, it's just hard to try to explain things over and over again and then they usually answer "that's weird, the person I know doesn't have that or that" or "do this diet, it will cure you!" you know, all that kind of stuff gets old sometimes. Alrighty, sorry for such a long reply to you both, but thanks for talking! I'm gunna get back to resting from my kidney stone surgery. I'm a lot more sore than I was last time, as they had to do both sides and I thought since I had already passed two stones in the last 3 weeks that they would only need to do one side. :-/
 
Oh and I haven't tried slow release iron yet, I think I will try this special "chelated" iron first, I researched it and it's supposed to be a lot gentler on the tummy than the usual kind (ferrous sulfate) that they put in regular multivitamins. At this time though... I feel like it's more important to try to get off of the pred. than try to add on another thing that could potentially hurt me more.
 
I started predn last aug 2011 and finally just got off it may 1, 2012. i couldnt taper lower than 10mgs. Finally i was given 1 mgs pills and went down 1 mgs at a time every few weeks. Took forever but i got off it. Lasted only 8 days without pred. Now am on entocort and started aza. Starting my taper of entocort very soon and hoping its easier than the pred. Good luck
 
Good luck on your entocort taper, blessedwithfour! I definitely want to ask for the 1mg's now to at least go down .5 mg's every other day at first. And guess what? I found out that the gentle iron pills don't hurt me! :dance: So I'm able to take a whole pill a day now and I'm really hope it'll help me with my energy since I've been anemic for so long. I need to remember to try to take vitamin C with it, but in food/drink form as I can't handle adding another pill to my day.
 
MelissaM24 said:
Oh I am also having surgery tomorrow to blast some kidney stones into dust. I get chronic kidney stones from the Crohn's too,
Click to expand...

Blast the kidney stones to dust? Is that with ultrasound? I read about that years ago. I have had some problems with kidney stones too, my GI justs want to take the gallbladder out, but I know that this further complicates things. I know I've got kidney stones but it's years since they played up. This sounds like a much better idea.
 
Hi, i think most of us on pred took some time to get off, alot of people bodies depend on it now.. it took me 9 months to get off and that was the help of humira..i seriously think you should as your doc for some kind of colonoscopy or something to see whats going on, thats alot of medication to be on.. something in your body might be off why the humira didnt get you off the pred... I thought i was in a bad way, kept being in pain out of no where, was constipted every 2 weeks. It took me coming to colorado with a better doctor to find out my crohns was in remission but because it took my last doctor to figure out i had crohns i have 10 cm of intestines was closed from the inflammation.. in my case i learnt sometimes its not the crohns thats active but when it was it did some damage and i decided to have surgery to take it out and since then im sooo happy
 
I was on prednisone for 11 years :( No medication worked for me but Humira once for about a year and a half. I could never get below 5 mg of pred. Had multiple surgeries even and Ostomy and those didnt help.

What helped me is diet. I never ever thought I would be able to eat fruit or veggies or beans or nuts until I found the SCD diet. Gluten grains sugar and dairy and known to breed bacteria in our guts and cause lots of people inflammation. I follow the SCD diet now and I can even eat a salad :) (only while symptom free). I ate a piece of chocolate cake and flared like crazy. Diet really does work for many. I hope you try it and it works for you too :)
 
hi melissa i was on and off them for about 3years and always had problems when i got to about 4-5mg but eventually i got off them eventually but had a bit of a time of it with withdrawl so be carefull when you do get off them.the very beginning when i got off them i was put on quetran i think just to help keep the D at bay and got a good run of it but ive hit a rough patch and might be back on them short term before i go in for my op.
 
Hainman, what is your procedure? I will pray that it goes well and helps take away your symptoms.
I wanted to ask everyone here for their prayers for my brother's friend Nathan who is fighting for his life right now in a hospital in Florida due to Crohn's complications. He flew there to try to get help from a wholistic center and I guess went septic from an abscess and fistulas... he is currently on dialysis and also surgery for the abscess, and that's all I know right now.

Snoflayk505, I'm glad that diet works for you. Unfortunately I really don't eat meat except chicken and would be so limited with that diet that I would have like 2 things to choose from, chicken and cooked veggies... plus I have no energy to make my own yogurt, chicken stock, etc... I wish I could hire a chef! I will be seeing a nutritionist to make sure I'm eating healthy and losing this weight.

spcwife, unfortunately Remicade never worked except for the first month and then they put me on Humira and it just doesn't fully help me so that's why I'm still on all the other stuff... prednisone is the only thing that helped stop my bleeding and got me out of the hospital. It sucks cuz it seems like none of the meds help to get me into full remission, but I am glad that I haven't had to have surgery or had any abscesses or fistulas like my brother's friend. I have 2 GI's and one has said I should get another colonoscopy, and the other one said I don't need one for a couple more years. I have a problem where I can't be sedated so I'd have to go under general anesthesia and the whole prep & everything I just don't want to do right now, especially because there's nothing they could really change in my treatment since i'm already on everything! :-/
 
Gra, do you have kidney stones and gallstones? To blast my kidney stones they do a procedure called Extracorporeal Shockwave Lithotripsy (ESWL), where they use a big machine that uses sound waves to break the stones up in your kidneys. Crazy, huh?
 
im in the middle of trying to find out whether im in a flare,infection or something worse ie new complications.ive had poo samples checked and its came back clean so they are a bit stumped as to why im doing so many scooby doo's......one minute they want to operate now he doesnt,
hope your bro's mate pulls through...sending positive thoughts from a hardy scotsman....
 
I found that ferrous fumarate was a much more tolerable type of iron supplement, I too was scared of taking it after the disaster with ferrous sulphate - it felt life it was shredding my insides! But the fumarate was fine, I've never had any pain or problems with it.

I've been on the pred for 9 months and I'm finally down to 5mg, just one week left on it (fingers crossed).
 
My brother's friend ended up passing away the night after I wrote that. So terribly sad; he was only 21. The saddest part is that he saw a surgeon before keeping on the wholistic diet/juice fast and no medicine regimen, and the surgeon said "you WILL DIE if you don't have surgery on this abscess" and he did not want the surgery. Well, the abscess turned into a full-blown infection that spread throughout his body and he died from it. Just a sad, sad story.

I am now in a bad crohn's flare and for the first week I could barely eat anything except chicken soup and a little bit of white toast. I'm doing a little better but have lost 10 pounds (which is good because I gained so much weight from the prednisone). I have almost no energy and man it's so painful. I know I should get some studies done but I can't decide if I should have them done with my local doctor or the "specialist" who is 1 1/2 hours away from me (and the specialist isn't any smarter than my local Dr., it's just that my local Dr. is wayyyyyy overbooked and too busy to ever really look at my case... it gets so confusing).... The thing is, if I get tests done locally, the specialist out of town never gets the results because he's older and only knows how to use his hospital's computer system, doesn't check his mailbox, etc. so if I ever wanted his opinion I would HAVE to get the tests done there. So maybe I should just get them done there but have them sent to my local Doctor. I don't know... because my local Dr. totally understood why I couldn't just "stop" the prednisone even though I was down to 2.5 mg and the out-of-town doc was just like "you just have to taper for a week and then stop completely" and I was like HELLO then I'll most likely flare up and have to be hospitalized and go all the way back up on the prednisone! Well, this flare up happened when I was still on 2 mg! But my local Doc doesn't want me going up on the pred. because of the high blood pressure, weight gain, insomnia, etc. that it gave me.

So confusing. Sorry for the randomness of this post but it's late and I need to go to bed!
 
David said:
When was the last time you had tests that evaluated your stomach and small intestine? Endoscopy, capsule endoscopy, small bowel series, MRE -- something like that?
Click to expand...
David is right.

Also it took me 6 months to get off the prednisone. Now even though I am in a flare and have been for two months. Although I am in a flare they are doing absolutely everything they can to avoid it. They are going to try surgery most likely.

Best of luck to you!
 

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