Prednisone - Is anything "normal"?

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UC Wife in MD
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Date Joined Aug 2007
Total Posts : 63
   Posted 8/24/2007 6:09 AM (GMT -7)   
I've read a bunch of lists of common side effects with Prednisone but it seems like anything that makes you feel bad could be Prednisone.  It's hard to tell if your fighting something or if it's just a side effect of Prednisone.
 
What is everyone else's experiences on that wonderful eyes drug?
 
My husband was at 30mg of Prednisone starting in February.  He tried tapering a few times but the blood and pain would come back.  He got bad acne, bad temper (roid rage) and his face would swell mostly in the morning.  He also had the huge appetite but couldn't gain any weight (he kept losing weight).
 
Now he's at 10mg and he threw up two days last week and then again this morning.  He's always exhausted and I came downstairs to see him sleeping on the sofa in a puddle of sweat (wrapped in my Redskin's blanket!).  His one foot is now swollen really bad.  He can't sleep through the night, has to pee every hour and was having irregular heartbeats last week.
 
This is so frustrating because last week he claimed he was just fighting a bug and that's why he was getting sick.  I know your immune system gets all messed up on Prednisone as well, but 3 weeks of being absolutely exhausted, depressed and disinterested in everything?
 
I managed to convince him to move his doctor's appointment up to next week instead of two weeks since he won't call the doctor to see if something is really wrong with him or if it's just side effects.
 
Sorry for venting but this is such a strange drug.

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 8/24/2007 6:20 AM (GMT -7)   
The vomiting, fatigue, and weight loss are symptoms of UC. The mood swings, irregular body temperatures, appetite, depression, and acne are the side effects of prednisone. I would get his foot looked at, that is not a symptom of either condition. I lived like your husband for over 2 years and I know how awful all those symptoms are.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


princesa
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Date Joined Aug 2007
Total Posts : 2198
   Posted 8/24/2007 11:30 AM (GMT -7)   
Is your husband on other meds, too? Have you talked to his doctor about alternatives to pred?
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/24/2007 12:57 PM (GMT -7)   
He's on Sulfasalizine, I don't know the dosage amount but the doctor recently upped it. 12 pills a day. He also is doing the Rowasa (I think, though it might be the other name that I can't think of off the top of my head) enemas.

I personally haven't been able to talk to his doctor, he goes during his work hours. I have asked him to ask his doctor about alternatives but he says he's tried other drugs.
 

Post Edited (UC Wife in MD) : 9/7/2007 10:07:55 AM (GMT-6)


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 8/24/2007 1:44 PM (GMT -7)   
When I was going from 30 to 20mg pred a few weeks ago I got 48 hours of flu-like symptoms and I sweat through all my sheets and blankets overnight and slept for like 16 hours straight. Then I just went back to normal sweating, mania, temper, rapid heartbeat etc etc... Then the UC came back, so I'm back on 30mg. SUCKS.
31 year old female
diagnosed 2007
currently on 40 mg Prednisone, 12 Asacol tabs for UC
also take Probiotics, Multivitamin, Effexor, Claritin, Albuterol, Advair. . . . . 


Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 8/24/2007 2:13 PM (GMT -7)   
Love the body acne and the mood swings.

LOOOOVVEEE ITTTT!
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 8/24/2007 2:28 PM (GMT -7)   
Is your husband flaring? I was on prednisone for 4 months last fall. Started at 60 mgs and got down to 15 mgs or so and started having similar symptoms your husband was having. I was determined to get off the prednisone and tapered too quickly, before my UC was really under control and stable. As a result, I too had a racing heart (caused by dehydration), rapid weight lost, horrible night sweats, etc....I let it continue for too long and ended up in the hospital for four days.

I've been there and haven't told my doctor everything for fear of the medicine they might put be on. I learned the hard way and had to go into the hospital. My advice is to try to convince your husband to see his doctor ASAP and tell the EVERYTHING that is going on. Try to go with him to the doctors too. He may not ask you to go, and may not act like he wants you there, but once my mom (yes, I'm 31, married and my mom started going with me last fall) started going with me to my doctor appointments, I felt like my family was really behind me and dealing with this as much as I was. It took me 14 years to really let my family and friends in on what I was going through.

My guess (and this is just a guess) is that your husband's UC is not under control at 10 mgs. I ultimately had to go back up to 60 mgs. I stayed there for a long time and then did a very slow taper from there, until I was able to get off the prednisone with no side effects.

Good luck, we've all been there and your husband will get through this.
Diagnosed UC - 1993
31 year old female

Current Meds:

Colazal (3 pills two to three times a day)
Flax oil and fish oil capsules occasionally

Post Edited (LWW1993) : 8/24/2007 4:02:55 PM (GMT-6)


princesa
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Date Joined Aug 2007
Total Posts : 2198
   Posted 8/24/2007 2:54 PM (GMT -7)   
UC Wife in MD said...
He's on Sulfasalizine, I don't know the doseage amount but the doctor recently upped it. 6 or 8 pills a day. He also is doing the Rowasa (I think, though it might be the other name that I can't think of off the top of my head) enemas.

I personally haven't been able to talk to his doctor, he goes during his work hours. I have asked him to ask his doctor about alternatives but he says he's tried other drugs like azal and Remicade (sorry if I'm butchering the names) and he just needs time to taper off the Prednisone.
The general concensus of the GI docs I've seen - and there have been several - is immunosuppresant drugs (Imuran, 6mp) are preferrable to prednisone because of pred's devastating side effects.
 
I agree with the other posts: he needs to be honest with the doctor and it would probably help if you went with him to make sure the whole story gets told. It might be worth getting a second opinion, too. Different docs have different ways of handling the drugs and it sounds like your hubby is really suffering.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/24/2007 10:08 PM (GMT -7)   
Yeah my husband is on the second doctor...the first one I think treated too wide of a range of digestive problems and wasn't specialized enough. I did go with him the first appointment after the Colonoscopy because the doctor mentioned after the Colonoscopy that maybe he wanted to think about surgery as an option. I thought we were going to discuss that during the next visit but it wasn't mentioned. I did move his appointment up. He's been having appointments every 3 weeks or so and his next one was Sept 5th but I had it moved up to earliest available which is the 31st.

He doesn't tell me much about how he's feeling because I "nag" him about calling his doctor. I think he's having blood again but he says it's because he ate some meatballs that must have had milk in them.

I keep telling him what great support I'm getting from this forum and if he would just read what some of you guys have said, that he's not alone and there's other people who have felt like this. He's just trying to muscle through the last 10 mg of Prednisone quickly. He thinks if he gets off it, everything will be ok.

I quoted one of the posts in this thread to him and he asked me "you told them everything?". He was referring to the frequent urination and depression. I said "of course, these people have felt just like you. This isn't a Car forum where you get flamed for that stuff. People list their medications and procedures like people on the car forums list car modifications." At least he smiled at that...

I told him he's probably vitamin deficient and I'm going to get him some Flintsone's chewables since he's having a hard time getting all his pills down. lol

Post Edited (UC Wife in MD) : 8/24/2007 11:08:08 PM (GMT-6)


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 8/24/2007 10:14 PM (GMT -7)   
I cant take predinsone, it makes my heart palpitate really bad.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/29/2007 8:47 AM (GMT -7)   
Doctor's visit is only 2 days away...YEY! I keep reminding him to make sure he tells the doctor EVERYTHING that has been happening.

So currently his one foot is really swollen, his mouth is really dry and chalky and his tongue is sore. He tried to go down to 7.5mg Prednisone but started having blood so he went back to 10mg. He said today that he's nauseous at work and that was a first.

I'm hoping his doctor can get him off the Prednisone and on something else. I read on here that Entocort is a steriod with less side effects for Crohns but people with UC have had success with it.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/29/2007 11:18 AM (GMT -7)   
The symptoms I have the most on prednisone were "moon face", mood swings, mild acne, insatiable appetite and cravings for anything salty and bad for me (especially chili cheese fries), rapid heart rate, weakness, fatigue, sweating... I'm sure I'm forgetting something. I also have osteopenia in my hip and lumbar region of my spine, I have to wear glasses all the time now, and I seem to have some sort of potassium deficiency now that happened after being on pred this last time and my potassium levels are at 1.5 where 3.something is normal, whatever that means, so I'm on potassium supplements *shrug*

It's an evil drug.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
10meq Potassium Cl
 


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/29/2007 12:24 PM (GMT -7)   
ediekristen how high was your Prednisone dose and how long were you on it?

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/29/2007 12:38 PM (GMT -7)   
I've been on and off it since I was diagnosed in 1999, never going over 50mg, the longest I was on it was 45mg consistently for 5 1/2 months and the doctor wouldn't let me taper, so I tapered myself over another two months and found a new doc.

This last time though I was on 40mg for three months and then tapered for one or two. I've read that high sodium can cause low potassium, and I had both, but now the potassium isn't really going back up. I've been reading that anything under 3 is considered hypokalemia... I'm not sure why my doctor didn't seem too concerned about such a low number :-/
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
10meq Potassium Cl
 


CityWoman
Regular Member


Date Joined Jun 2004
Total Posts : 123
   Posted 8/30/2007 4:03 AM (GMT -7)   
I had severe difficulty weaning off of Pred this last time.
 
For 5 months I was sick every 2 weeks (after tapering) for 1-3 days with headaches and vomiting.
 
I was on Pred for a year - didn't sleep for a year!, avoided the moon face; but gained weight; and my brain was foggy! Everything else was typical on Pred.
 
Told my doctor / GI that I cannot go through the sickness I did on Pred. I missed, probably, 20 days of work in 5 months. Thank God I have a great job with a greater boss.
 
It's tough for sure.
 
Judy

February 04: Rushed to hospital with severe blood haemorrhage. Diagnosed with indeterminate UC in 2/3 of my bowel. Treated with heavy doses of Pred; started Salofalk tabs and sups.

 

April 06: First major flare – more haemorrhaging. Colonoscopy once against confirmed indeterminate UC.

 

May 06: Started 40 mg Pred. Weaned down to 10mg by July 8, held at 10mg until December 20, tapering 1mg every 2 weeks, 5mg a day as of February 14. All this plus 10 Salofalk tabs daily.

 

Jan through May 2007: Suffering from severe headaches and vomiting likely caused by prednisone.

 

Feb 26 07: Started Imuran with continued success.

 

May 12 07: Final dose of prednisone after 50 weeks!


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/30/2007 6:22 AM (GMT -7)   
Yeah my husband is in the negative with days off at work. He got sick AGAIN this morning. Thank god the Dr. appointment is tomorrow. I think the Sulfasalazine is making him nauseous now because he's on a high dose to try to let him taper the pred.

Does anyone have any suggestion of drug combinations that worked for them? I've been trying to put together a list of things he should ask his doctor about and some alternate drugs to what he's on now that have worked for other UC people.

aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 8/30/2007 7:46 AM (GMT -7)   
I just started Imuran and am on prednisone, my doc recommended it as a way to get my flare under control for the short term(with the pred) and later to taper down the prednisone and increase the Imuran. He told me as well as another poster mentioned that Imuran is good for lessening the side effects of the prednisone when you are weaning off it. I will let you know how that works!!

As for getting enough vitamins, had your husband tried any of those drinks like ensure or boost? I took them during my pregnancy and had no reactions to them, and you can get them lactose free.

Good luck!
aquafly79
 
Diagnosed with UC in 2004
Had flares all through pregnancy last year, and current flare on and off for about 4 months...
Currently on 35mg prednisone, Lialda,
prenatal vitamin(almost done nursing, but will keep taking for folic acid and other nutrients), calcium/magnesium, and Bifidus Balance FOS probiotics
Will start Imuran as soon as I am done nursing...
Looking into nutrition, vitamins, anything to get me better and keep me off prednisone!!!


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/30/2007 8:26 PM (GMT -7)   
Hi UC wife....basically the same thing that Aquafly just posted is where we are at. Hubby was in the most extreme pain and discomfort for a month before I finally could not take it any longer and insisted he go to the hospital. That was mid may - started on the Imuran along with 40 mg of prednisone. 3 1/2 months later he is tapering and now on 20 mg of prednisone. We will taper now at 2 1/2 mg intervals every 10 days. Not sure what we will be doing at the 10mg dose - if it will still be 10 days reducing by 2 1/2 mgs or possibly one mg at a time as some have mentioned on the board here. So far so good - I think the Imuran is taking over however he is so so tired. He does still need the pain meds which concerns me but it is the only way he can be functional.

To our friends and family with his not so good days they think it is not good....however in comparison to where he was even on his current lousy days it is so much better than where he was at mid May.

Hopefully the tapering can continue and the Imuran will work more and more. The colocourt enemas also seemed to make a difference in his feeling better.

I know exactly what you mean. He does not go on the computer and I am the one like yourself who prints off stuff for him to read, I relate various things to him and I take notes like mad from all the great voices of experience here and sort through and make my notes to discuss with the doctor and him. He actually doesn't mind - he tells me to share info with others since everyone is so open and he knows how much this has helped me too.

I got the packet from Mayo Clinic and started filling out all the forms tonight...some of the questions I need to go in "the way back machine" to find the answers. Too tired and set it aside to finish tomorrow or the weekend - need to go through his medical records. I WILL make a copy and put it somewhere so I'll have all the info if and when needed again....and again....lol.

Sometimes I get a little aggravated as it is all left up to me - I'm the secretary. But it wouldn't get done properly if he had to do it himself and it's partly my fault - I've spoiled him for 39 years so I don't think I can teach that old dog new tricks right now....:-)

It's a good thing he's a good man and has been a good partner all these years or I would probably be very resentful. (I wouldn't be honest if I didn't admit I do get resentful at times at the disease and what it has done to him. We all have our moments - our "pity parties" as someone called it...human nature for sure.)

Honestly though his hands are too shaky, the fatigue and discomfort makes it such that he couldn't focus and concentrate even if he wanted to do it. I am amazed at all the people who have to "do it all" and dig down and find a way regardless and don't have someone to pick up the slack for them. That is without a doubt very difficult. My husband comments and is quite impressed at the stories I tell him and doesn't know how people do it and also be able to be at the computer helping others and looking for ways and info to maybe help themselves too. He just can't sit at the computer for any length of time - uncomfortable as well as the attention span part of it. So when he does get on the computer he has other things to tend to.

So UC wife just hang in there with the rest of us and hopefully there will be some info you will get from here to help hubby out.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 9/4/2007 8:58 AM (GMT -7)   
 
He did go to the Doctor's on Friday and the Dr. had no idea why his feet were swollen or why he was throwing up almost everyday.  The Dr. gave him paperwork on his current 3 options:
 
1. A test drug that starts with an "A", like abaldudi or something. 
2. A test drug that has never been tested on humans before, only monkey's called MDX 1100 or something.
3. Remicade.
 
I think we're choosing Remicade because the other two were just a little too adventurous for him right now.  I can't even imagine if he was placed in the Placebo group.... I've read alot of good things about Remicade.  Hopefully he can start it ASAP.  He goes back to the doctor tomorrow and will get a blood test because the Dr. was afraid he was developing Diabetes with his frequent urination. :(
 
 

Post Edited (UC Wife in MD) : 9/7/2007 10:14:26 AM (GMT-6)

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