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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone and me, a personal diary


 
06-13-2007, 03:59 AM   #151
vikkytoria
 
i was on predisone 30 mg for 18 days and has no real side effects apart from hot flushes and sweating more than usual, not good but bearable, then reduced to 25mg and oh my god! pain, cramps, excessive bm's, was terrible, went to the doctors as i cant just make an appointment with my gi i have to wait til bleeding july ( was may at this time) and the doc was pants! he turned around and said im sorry i cant give you any medication for you pain or bm you have to get this off your gi, i was like errr, then went down again ignoring pain (well trying) to 20mg and my face bloated right out! like a balloon! and only then noticed that i was putting on 3 pounds in weight everyweek (id lost a stone so i didnt really notice til then). also hot flushes and sweating and increased appatite and headaches and usual CD pains still there! you see before i was diagnosed my doc put me on codeine phsophate but made me sick so stopped, well i so in pain i took it again and 12 days passed, no nausea so was good for 12 days (ish) , now im on 15mg and stopped taking codiene as nausea is very bad even without taking the codiene and pain is seriously bad etc... but im determined to be off the predisone as the side effects arent good. though i have had no nose bleeds or dry skin - touch wood- but i have expierienced a very dry mouth. but my sleeping i find is ok, i wont feel tired but as soon as i put my head to the pillow after tossing and turning for about 5 mins im asleep. and i expierienced my first "accident" yesterday and too say the least it has put my confidence of staying my boyfriends house down the drain completely! ive just realised im ranting and im sorry! but thats my expierience so far, hopfully ile be weened off predisone in 3 weeks, just before my appointment with my consultant and well we will just have to see what happens!
06-13-2007, 07:07 AM   #152
Kev
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Prednisone and me, a personal diary.. Let me respond in turn. D, I went to the charity program where you get your drugs at cost in our area to get my imuran.
I'd heard rumours that the cost of immuno suppressant therapy was really high.
The local program, called the Metro Dispensary, allows politicians an 'out' for the cases where people literally can't afford life saving drugs as our medical program doesn't cover it, and private programs have the whole 'pre-existing condition' card to pull out of their sleeves. Anyway, I was really fearful of how much this prescription was going to cost.. and the M.D. (funy initials) has a 'cash only' basis for paying.. no debit/credit or cheques allowed, thanx!
Anyway, when the nice pharmacist said "That will be Twelve forty seven", I must have literally blanched.. I thought she meant 12 hundred & 47 dollars!!
I asked her to repeat it.. and she said 12 dollars and 47 cents. What did you think I said? Wellll, w/o going into that, I paid for my new meds thankfully. I don't know what I would have done if it had been the other. Talk about relief

Vicky.. WOW. I never had that much trouble with the pred.. Lost some sleep and suffered occasional moodiness.. To me it was a god send (1st time on it)
Some of the symptoms you describe.. dry mouth for one, I experienced long before pred... As for pain, I get pain every day, but not from the pred either.

In order to take my meds, I ave to eat first.. Eating triggers pain for me, then after taking my meds (5-ASA) I get another round of cramps, and need to lie down.. The more my condition flares, the worse the pain & cramps get.

Anyway, thanx to all who piped in.. Think I will end this diary (since I start to taper tomorrow) and start another... Imuran and me, the next adventure...
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-03-2007, 09:11 AM   #153
Heathcroft
 
Hi Kev- been following your progress with interest. Don't know of this helps but I'm about your age with a similar history and only recently been weaned off the prednisilone. Stated it last August during a stay in hospital on 40mg and came down to 10mg by Christmas. Thats been swapped now for azathioprine on the grounds thats its 'safer' but I have my doubts as my white blood count is way down already.

Actually I miss the prednisone in a way. It kept me up all night peeing but I felt good otherwise and was mainly symptom free. Gave me a good appetite too. I hope its just an adjustment of dose that'll sort it out for you.

One question for you if you wouldn't mind? Do you get a sore backside with all those visits? If so how do you cope?
Good luck!
A question heree if you dont mind?
07-03-2007, 11:11 AM   #154
Kev
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Hey Heathcroft.. Well, the similarities don't end there. I'm on imuran now also. I even started yet another diary.. Imuran and me (imaginitive title, isn't it?).. It's where I post most often... since I'm in the midst of tapering off pred for the last time at the mo.. I don't know why, but on my last trip to the hospital just yesterday, when I listed my drugs for them, they were most concerned w pred, not the imuran. For me, the pred was a wonder and wonderful drug. It helped with most/all of my symptoms, and it made me feel wonderful overall.. Side effects were minimal. As for visits making me sore, I am not sure I understand completely? Are u referring to the procedures that are involved? I always had what I considered a high threshold for pain, that is one of the things that a shady boxing promoter had figured out when I was approached to turn pro... despite the fact that my coach knew I wasn't the boxer I needed to be to turn pro.. Anyway, I digress. Thing of it is that I've grown accustomed to the pain of this illness, and the procedures it involves.
07-03-2007, 12:37 PM   #155
Heathcroft
 
Hi Kev- I'll follow your new 'diary' as well!

What I meant is that I have numerous small painful cracks in the skin just inside the anal margin and its purgatory. It's not your usual single anal fissure right at the back- the cracks are either side.

Ive tried warm baths, steroid and zinc oxide based creams etc etc and also just doing nothing at all. I have removed alcohol, caffeine and suspect foods from my diet as suggested by my doctor. But no joy.

So I feel like I'm walking with an ass full of powdered glass. It's not the frequency of BMs thats the cause, as most days I only go once with the new drugs.

I heard that 1/3 of Crohn's patients have this but I don't read much about it in this forum. It's the one thing I can't tolerate (I can tolerate the attacks and all the pain & stuff that goes with them but this messes me up big time as its constant and assiduous!)

Anyone else reading this thread who can help I'd appreciate it!
07-03-2007, 05:05 PM   #156
Kev
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Hey, Heathcroft.. Haven't experienced your pain, but I do commisserate. Here's a longshot.. I've heard of a home remedy for cracked and splitting skin, just not ever used in that particular location before that I'm aware of. Ear wax. And, no
I not pulling your leg. I have no idea if it would work, and of course, there is a risk of infection... but you sounded really desparate, and it certainly falls into that category... "it's sounds soooo crazy, it just might work!" You never know.
08-12-2007, 03:26 PM   #157
Kev
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OK. wasn't expecting to be back to this diary.. Thought I'd be off pred and on imuran (aka azathioprine).. Well, that didn't work. Long story short, to bring up to speed anyone dropping into this post for the 1st time, i'm allergic to imuran. now, I've been on a steady dose of pred (25 mg) for the past 7 - 8 weeks. This week past I started yet another taper... dropped a mere 2.5 mg.. so now I've been on 22.5 mg for the last 6 days... with a solid problem free history BEFORE the extremely mild dosage reduction. 6 days into taper, and I'm experiencing more and more problems.. skin rashes, dandruff, pains in the back, side and lower right quadrant... more gas, much looser BM's, etc...
I can't believe (if I wasn't experiencing it first hand) that such a 'modest' drop in my daily dose of pred could have these effects. If they had started during my 1st day of taper, then I'd see it as a flare.. but they didn't. It gradually started..., each day a little worse, a little more, than the previous day. So, it seems there is a 'distinct' minimum dosage, or threshold dosage, for my IBD. I was on pred the 1st time at 20 mg a day, and tho it helped, the 'flare up' the docs put me on pred for didn't stop until they upped my dose to 40mg a day.

so, now what am I going to do? Good question.. My next GI visit is almost 4 weeks away.. i could pop back up to 25, and discuss it with her. Or I could continue the taper process.. and see how bad and how fast I deteriorate.. I think at this stage I'll continue the taper... and keep my fingers crossed..

question to all pred users... anyone else ever seem to notice a 'threshold' dosage? yuo know, where you go above/below a certain amount and the 'shit' literally hits the fan? Be interested to hear if anyone ever experienced it
08-12-2007, 03:35 PM   #158
soupdragon69
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Hi Kev,

Really feel for you at the minute...

Having had pred alot for my asthma over the years I have found if on it a longer period of time and needing to taper I tend to get almost flu like symptoms and feel really rough for a few days with muscle and joint pain and exhaustion, then tend to come right again just before I am due to drop the dose again. I can understand the gradual onset too as it can take your body a while to register the drop and figure out it needs to start compensating by the adrenal glands working more to produce natural cortisol.

I can't comment on the IBD front though as only had it with this recent admission recently. Am down to 20mg now (due to drop to 10mg this wed).

As for the skin rashes I know my skin WILL flare really badly when reducing so yes I agree it can be linked. The only thing that has helped me this time on the skin front and reducing has been the infliximab as it seems to have dampened down everything right across the board.

Hope you get some relief soon, it can be hard to figure out the best move. Is there any way you could phone your GI or do they have a support nurse you could kick things round with?

Thinking of you.
__________________
Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
08-12-2007, 05:01 PM   #159
Darkeffx
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I had a similar thing happen the first time I went from 15mg to 10mg. I got gradually worse for the next few days after the reduction, culminating in a trip to the ER on day 5.
08-12-2007, 07:22 PM   #160
Kev
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Thanx to Darkeffx & Soup... Well, since I'm past Day 5 of the tapering process, I hope I don't end up in the ER.. And, Soup, I wasnt' aware they prescribed pred for asthma... I do recall, many many years ago, a g/f who had asthma. She took/used an inhalor.. but it didn't have corticosteroids in it. Instead, it had a form of psuedo (sp?) adrenalin... I believe it was called adrenalazine (sp?). now, like I said, it was years ago.. back in the 70s.. and things have a way of changing over time.. the inhalor did have side effects that I won't go into here.. considering the pros and mostly cons of pred, its surprising that its used.. or that they stopped using adrenalize (or whatever)

Anyway, as for me... the changes I'm feeling are pretty dis-heartening. Goal was to taper off, w/o incident/flares, to avoid having to go on methotrexate.
But, considering the looser stools, the increase in frequency of BM's, and gas
PLUS that nagging back pain that is oooo so reminiscent of my pancreatitis, I get the feeling that things are going downhill inside of me relatively fast. Shit!
08-13-2007, 01:03 AM   #161
soupdragon69
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Yeah Kev they use steroids now in inhaler form (which I have been on the max dose for a couple of years now) and also in tablets when flaring asthma wise. Normally have 40mg but have been as high as 60mg a day. They use adrenaline in life threatening allergic reactions or severe acute attacks in known "brittle" asthmatics. I know what you mean about the side effects of it too!! ;-)

Sounds like you are going to need positive input on the meds front Kev, sorry. You know your body and are listening to it. Nail it sooner rather than later eh?

Keep in touch.
08-13-2007, 07:53 AM   #162
Kev
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Yeah, there are side effects, and then there are side effects. I occasionally got to wondering whether all of her attacks were real, or just possibly an excuse for her to reap the benefits of those side effects... given the proper circumstances.

now, why couldn't the meds I'm on have side effects like that? Life isn't fair...
10-23-2007, 06:01 PM   #163
Kev
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Prednisone and me... OK, took my last 2.5 mg of pred last Friday. I started to show dramatic downturn effects the day before (Thursday). Now its Tuesday, and I've really slipped quite a bit. Saturday, my first pred free day, was just the worst. Nearly 10 trips to the bathroom, whereas on pred my normal was 1 - 2

My 1st experience with pred was extremely positive, but I've noticed this last is a different story. The pred took longer to take effect, the dosage seemed to be less effective, and I showed serious signs of a downturn much sooner. In my 1st go round, I was off nearly a month before I suffered deterioration to the extent I've seen in the last 4 - 5 days. Definitely think our bodies have a tolerance or resistance effect develop with this drug. Just my take on it..
10-24-2007, 09:46 PM   #164
snazzy
 
Hi all,

Thankyou so much for this thread Kev and everyone else, has been very helpful for me

Its my 2nd day on Prednisone @ 40mg per day. Saw my GI doctor yesterday coz I have been in extreme pain (lower back pain) found out I have 15 cms diseased small intestine and due to the medication im on it has caused scar tissue and made my intestine very narrow - so the food has a hell of a time trying to pass though. Now I know what was causing the pain. Will be on prednisone for bout 3 months, not looking forward to the side affects - but just so glad to be feeling normal again! Also on Sulfasalazine, Imuran, antibiotics - nice drug cocktail in the morning LOL Seeing a specialist at the hospital soon to see if I have to have a operation to cut the diseased part out, soooooo dont want to SCARY STUFF ! This disease sucks, and I feel for everyone that has to go thru this. But we are very lucky to have such a great site like this. So thank u to everyone

Sarah xoxo
08-16-2010, 05:38 AM   #165
need2heal
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Hi,
I to am on prednisone.. it is so nice to see someone share their day to day experiences. I am on day 3 of 30mg and I too am having trouble sleeping. Other than that my tummy feels great!
03-07-2012, 11:21 AM   #166
SnowDay
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Just reading this now. I love how you write, Kev.
__________________
Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
03-07-2012, 03:28 PM   #167
Kev
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Well, thanks. I usually use a pen, but getting the ink of the computer screen was a real headache. Anyway, 4 years & 4 months (+/-) after writing this, pred didn't do it for me.

LDN did...

But that's another story.... eeer, diary.

Basic problem with pred is that it is a 'stop-gap' treatment. Great in emergencies, but of no use for the long run.
08-22-2012, 02:06 AM   #168
rearden metal
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Thank you for these updates
03-14-2014, 12:40 PM   #169
autoimmune queen
 
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I am new to the site but i think it's awesome you are doing this. I started my own 7 days ago because I needed to know for myself if the benefits outweighed the side effects. I have never been on a forum before, I think it is really brave of everyone.
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