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Prednisone Treatment ?'s

Hello, Some of you may know I was recently diagnosed with Crohns Colitis. I have a stricture in my transverse colon that was blocking the scope from going any further. I was referred for CT scan and to see a surgeon as I was told this was scar tissue and that it can only be removed. I had the Ct scan and it showed another spot with some inflammation right in the beggining of the colon where the ileum dumps in. Not super concerning to the suregon although he did want to see there with a scope. He didn't want to remove my strictured area without trying meds or stronger meds first since I was just diagnosed 3 weeks ago.

My GI Dr is the one who said I would need surgery, so after my Surgeon sent me on my way he said he would write my GI Dr. My GI Dr, said he would consult with my insurance (Kaiser Permanente) IBD specialist. (I kind of thought my GI should be an IBD specialist, but I guess I am glad that they have somebody dedicated to IBD.) Anyway now they want to put me on prednisone which I was not against really. Although now I have some reservations because I have these anxiety attacks and times where my heart races and I get really freaked out about it. My blood pressure is always good at the Dr so thats good.

I am just wondering what being put on 40mg of prednisone is like, some people say it makes them feel real jittery like they've had a lot of coffee. I am just wanting to hear from people's experience. I am a 29 year old male for reference. I have been on a strong opiod medication for 6 years. But i still get anxiety at times and worry about racing heart. I have low iron too and I think that doesn't help when I get worked up and my heart races.

I think I owe it to myself to see If I can get this stricture to not be as bad without getting cut open first. My Surgeon said basically we don't know how deep the scar tissue is, so that if we get it reduced 75% or something I may not be in pain anymore. Anyway, how has everyones experience with Prednisone been? And if anyone has anxiety and sometimes get racing heart I would love to hear their thoughts. Thank you so much
 

scottsma

Well-known member
Location
Tynemouth,
I was on pred for a month,tapering weekly from 40 to 5 .I found it best to take it really early in the morning,even if it means putting the alarm on then going back to bed.This was because I was scared of having problems sleeping,and it worked.I didn't gain weight,but I would suggest you have plenty healthy snacks in the cupboard just in case.Some people get a "moon" face,and feel jittery,but everything goes back to normal once you stop taking the meds.There are sure to be others posting with their own side effect stories and advice,but we're all different so best to see how it goes .Keep us posted as every ones experiences are interesting and helpful.Good luck.
 
It's a good idea to speak with the doctor who prescribed the opiods to let them know about that you're considering or willing be going on the prednisone so they are aware and you can have a conversation about what to expect, side effects to look for, when to call them, etc.

This may also come in handy. It's a list of questions to ask your doctor when starting a new medication. May help guide the conversation: http://psychcentral.com/lib/questions-for-your-doctor-about-medications/
 

Cat-a-Tonic

Super Moderator
Yes, you should taper if you're on prednisone for anything longer than a week. I'm actually on prednisone myself and am doing a 20 day taper. I started at 40 mg for 5 days, I just tapered to 30 mg which will also be for 5 days, then I'll do 20 mg for 5 days and 10 mg for 5 days and then stop. Hopefully that goes okay and gets me out of this flare. It did make me jittery at first, but that wore off after like the first day. Do take it first thing in the morning, and it helps to take it with food (I'm doing EEN right now so I take my pred with my first elemental drink of the morning). If you're looking at doing a 3 week taper, that shouldn't cause too many side effects.

They could also give you something for the anxiety. In the hospital, they gave me 0.5 mg lorazepam and that seemed to help quite a bit. Definitely worth asking your doctor about. Good luck!
 
watch out for any depression/mood changes, especially on the taper down. it's not you, it's the drug!! I'm on 40mgs now and doing ok...not nearly as crazy as when I took it when I was 19 (i'm 38 now). Sleep can be difficult, so I take a little melatonin 300mcg and a couple of tylenol to relax - i'm weird, regular tylenol does that to me, not the PM formula. I have to wake up at least 3 times in the middle of the night to pee too.
 
I started my first. Two days on 20 mg even though I was prescribed 40. I'm just weird sometimes and want to ease into it. I felt good those days had energy, my gut still hurt where my stricture is and it hurt a lot but I had energy etc. the last two days I've taken my prescribed 40mg and it hurts when I eat more than usual and I'm having heartburn type pain in my chest that tums helps a bit. I usually only experience pain and deep rumbles below my stomach. The last couple days I've had all my normal pains and more. Also I would think my asthma would be great on the prednisone like when I was a kid. The two days so far on 40 mg my asthma is not any better and honestly it's slightly worse. I'm having to use my inhaler. It feels worse when I have that heartburn type chest pain. My heart rate is good but I'm wondering if this could be from th prednisone. I've had IV steroids when I was 3 for acute asthma and prednisone after leaving hospital back then. But never prescrib d since childhood.
 

Cat-a-Tonic

Super Moderator
The heartburn is likely from the pred, I've had an increase in reflux symptoms since being on it myself. The increased appetite is likely due to the pred as well, it can make you really hungry. I don't have asthma so I don't know about that in regards to pred. Something to keep an eye on and maybe call your doctor about.
 
I have GERD as well or at least diagnosed at 9 with it by a ped GI. Asthma sometimes gets bugged when I used to get heartburn. Hoping it's all it is cause my gut pains aren't any better. Lower dose of it had me feeling good I'm calling my Dr tomorrow morning. Thank you guys
 
I'm on pred. Started on 40mg in february and have been trying to taper for ages but every time I get down my symptoms come back and I have to go back up. I haven't really had any terrible side effects from them but I have gained weight and got moon face. Also It affected my mood alot but I am also getting annoyed with the medication not working so it might not all be the pred. I do get fatigue but i have been told that is just the crohns. They should have prescribed you omeprazole alongside it to help with the heartburn and also calcium for the risk of osteoporosis?
 
I'm on pred. Started on 40mg in february and have been trying to taper for ages but every time I get down my symptoms come back and I have to go back up. I haven't really had any terrible side effects from them but I have gained weight and got moon face. Also It affected my mood alot but I am also getting annoyed with the medication not working so it might not all be the pred. I do get fatigue but i have been told that is just the crohns. They should have prescribed you omeprazole alongside it to help with the heartburn and also calcium for the risk of osteoporosis?[/

Are you on any biologic?
 
I'm on pred. Started on 40mg in february and have been trying to taper for ages but every time I get down my symptoms come back and I have to go back up. I haven't really had any terrible side effects from them but I have gained weight and got moon face. Also It affected my mood alot but I am also getting annoyed with the medication not working so it might not all be the pred. I do get fatigue but i have been told that is just the crohns. They should have prescribed you omeprazole alongside it to help with the heartburn and also calcium for the risk of osteoporosis?[/

Are you on any biologic?
Not yet. I am on azathioprine and pentasa too. They wanted to start humira but they did a flexible sigmoidiscopy and the inflammation had improved in the first part of my colon. Now I have to wait for a full colonoscopy to check the rest before they decide if I need it or not.
 
So far my joints are not painful anymore like they usually are. When I sit or sleep for a long time my knees will be real stuff and sore. That is gone but gut pains persist. Heartburn today and I have been on omeprazole since I was 9, I just take a tums here and there and it does the trick for this brand of heartburn so far.
 
I am not digging prednisone so far. I have had mucus in my stool the other day and have pain in my back and chest. Before starting it I wasn't having this much pain. I don't know if i was headed into a flare or something right before starting it but my overall physical well-being has not improved. It is weird because the first couple days on the lower dose I had more energy than normal. I still had gut pains pretty good but I felt overall energetic and cheerful.

I am waiting on my GI nurse to call me back, its not like I feel the symptoms all day of the heartburn and chest and back pain but its often enough that im concerned.
 
I am not digging prednisone so far. I have had mucus in my stool the other day and have pain in my back and chest. Before starting it I wasn't having this much pain. I don't know if i was headed into a flare or something right before starting it but my overall physical well-being has not improved. It is weird because the first couple days on the lower dose I had more energy than normal. I still had gut pains pretty good but I felt overall energetic and cheerful.

I am waiting on my GI nurse to call me back, its not like I feel the symptoms all day of the heartburn and chest and back pain but its often enough that im concerned.
Hope you feel better soon.
 
Ive been having heartburn from it too. Doc said fine to take daily omeprazole 20mgs until I get weaned off. Had a few days of weird feet and ankle swelling but its better today. The insomnia is crazy tho...i lay down at 11:30 or so and not even tired, then wide awake by 2:30-4am. What do you guys use for insomnia on Pred?
 

scottsma

Well-known member
Location
Tynemouth,
I made sure to take pred.VERY early in the morning,with a yoghurt drink.I put the alarm on then went back to bed if I felt like it.I have suffered from restless nights for years and was afraid the pred.would make it worse.I also used an O.T.C sleeping aid and had no problems.I am now on prescribed Amitriptilyne and sleep v. well.Your doc. should be able to help but it will depend on what other meds you're on.I found my arthritis much improved while on pred.but I did go through a bleeding / mucus phase toward the end of the course.But we're all different so I expect we'll have different side effects.
 
Prednisone after almost 2 weeks doesn't seem to be helping my symptoms. I think this damn Stricture is just too much scar tissue. It is weird but my pain has gotten worse on prednisone. I am waking up every 1-2 hours through the night because of the pain in my gut. My stools have become a lot harder on the prednisone. Maybe the rest of my bowels are doing what they normally do which is produce harder stools because of the medication I take that constipates most. And because of that when it has to go through my strictured area it hurts like hell. Where as when I was producing a lot more soft stools it still hurt like hell but wasn't waking me up all night long.

My joints are definitely not as sore in the morning and with inactivity on the prednisone though. Hopefully I don't have RA and maybe just Crohn's related arthritis. My body just feels like it is failing me and it is hard to have hope. My GI is thinking Surgery to remove the stricture will most probably happen now. At this point I feel like it is cancer that needs to be removed it causes me so much agony. So I am resigned to just let them take that part of my colon.

Really odd that I have felt worse pain on the prednisone. My bowels aren't as active with all the gurgling and harsh noises, I think its just that steroids wont help the scar tissued stricture.
 
Really odd that I have felt worse pain on the prednisone. My bowels aren't as active with all the gurgling and harsh noises, I think its just that steroids wont help the scar tissued stricture.
Are you on a biologic too? I was in the same situation with the ongoing pain and multiple strictures in my small intestine. I started 40mg Prednisone and it didn't cut the pain a whole lot. Then they switched me from Humira to Remicade and Cellcept and the pain totally stopped. I'm tapering off the Prednisone, now on 25mgs.
 
Are you on a biologic too? I was in the same situation with the ongoing pain and multiple strictures in my small intestine. I started 40mg Prednisone and it didn't cut the pain a whole lot. Then they switched me from Humira to Remicade and Cellcept and the pain totally stopped. I'm tapering off the Prednisone, now on 25mgs.
No I am newly diagnosed and they wanted to see if the prednisone would knock out the stricture even though upon scoping my GI said it was scar tissue and would have to come out. The surgeon said since I was just diagnosed maybe we should try some medications before surgery. I go in for blood draws and had my TB test which i was told to test my candidacy for other meds, I assume would be a biologic. Remicade is used pretty heavily with my provider Kaiser Permanente here in California.
 
No I am newly diagnosed and they wanted to see if the prednisone would knock out the stricture even though upon scoping my GI said it was scar tissue and would have to come out. The surgeon said since I was just diagnosed maybe we should try some medications before surgery. I go in for blood draws and had my TB test which i was told to test my candidacy for other meds, I assume would be a biologic. Remicade is used pretty heavily with my provider Kaiser Permanente here in California.
Remicade is the most effective of the 3 main anti-TNF agents. It's the gold standard. http://www.ncbi.nlm.nih.gov/m/pubmed/27058635/
My friend is a GI doctor at Kaiser - he can get anything he wants. they give him a lot of leeway on the formulary.
 
So 2 1/2 weeks on prednisone and my gut pain is still really bad. Especially at night it wakes me up throughout the night. My GI basically thought i should have surgery right after my first colonoscopy and if prednisone doesn't work for the stricture in my colon then he thinks it should be removed. He said it is made up of too much scar tissue to do anything with. Another member who has had scar tissued strictures removed said it is the only way for scar tissue. Anyone else have thoughts on strictures made up of scar tissue?

My other symptoms after starting the prednisone have got better, i don't have as much heartburn chest pain type stuff and my asthma isnt acting up as a result of when my chest would feel tight and painful. I have mor energy and feel better in many ways other than the pain that comes whenever stool is passing through my colon.

The part they want to remove is in my transverse colon right before it bends to the descending colon. they could not ge tthe scope past it to look at the rest but on my CT scan I showed some possible thickening or inflammation right where my colon begins where the ileum dumps out. I wonder if they go ahead with the surgery on the spot that is really bad in my transverse if they would then look at the other location right away or how they would attack that??

Any thoughts from you wise people I really appreciate, thank you so much.
 

Cat-a-Tonic

Super Moderator
That's correct, unfortunately scar tissue can't be healed with any medication. They might be able to stretch the strictured area so that it's less narrow, but really the only option to get rid of scar tissue is to surgically remove it. So it does sound like surgery might be your best option since the stricture is still causing you so much pain. I haven't had a resection myself so I can't specifically speak to any personal experience, but I know that a lot of forum members have had resections. You might want to start a new thread in the Surgery section of the forum to ask about that.
 
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