• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Prednisone and me, a personal diary

K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, seeing my GI this afternoon, so the official verdict is still out.. However, I feel pretty good going into it, and I did receive some good news this AM. My hard work this past month has paid off.. I've requalified for my licence, and the gov't has issued it.. just waiting for it to arrive in the mail.

Now, how much work I'll be able to handle is still a matter for my health, and my doc's, but at least I've passed a major hurdle. I haven't done this work in over 30 years (yes, kiddies, I am THAT old).. I plan on starting slow, just a little part time work to start, and see how it goes. But at least I've acomplished something positive in my battle with this ailment. And if this old fart can do it, so can you younger folks.
 
Nancy Lee

Nancy Lee

OH KEV!!!!

That's fantastic news! I'm so happy for you! :)
Now discuss the work and amount of hours etc with your doctor today,
and see what input she has to offer.

Please come back after your appointment and give us another update!

Hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, so by now some of you may have noticed a change in my appearance. Relax, it isn't a side effect of my illness. I've had to change my avatar now that I'm working. As some of you knew, I've been trying to get re-licensed as a private investigator.. but my age and health made that a real challenge. Ok, mission accomplished.. but it's hard to work in this field if you go posting a picture of yourself.. hence the photo change. Now, to describe my work to my doctors is the next big challenge. It isn't at all like what most expect from reading detective novels or watching the tube.
It involves mostly discrete (or is that discreet??) tailing and surveilance, a lot of leg work (but these days a lot of that can be accomplished via computer),
and hour after hour of boredom, followed by the occasional adrenaline rush. I didn't get back into this line of work because I love it, else I wouldn't have left it 30 odd years ago. It's more a case of I felt I could do it while coping with my illness. Let's hope I haven't over-reached here..
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. Post doctor visit update. OK, the plan is to continue the taper, BUT, if I experience problems, to ramp up again to a comfortable dose, then to start to taper in 1/2 pill decrements.. luckily, I have a pill splitter. At this stage, so far so good. Here's hoping I can wean off with no side effects.
If I come off the pred, then flare up again, the next step is Imuran. Sheesh!!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, rough nite.. Been up since 6 AM. And this time its not the IBD... Now that I'm down to 10 mg of pred a day, all of my other old age complaints are flaring,, just like they used to before the pred made them take a vacation.. My dandruff came back.. annoying, but I can cope with it.
However, my arthritis (or arthritic like pain) came back with a vengence, so much so that it kept me awake off & on most of the nite, before it finally convinced me to toss in the towel on trying to get a decent nites sleep. And to think that, prior to pred, I was so accustomed to it I hardly noticed it. It's stuff like this that makes leaving prednisone a really hard pill to swallow (sort of).. Like, if it makes IBD and all of my other little issues go away, then its a really nice little pharmaceutical 'buddy'. Shame about those nasty side effects....
 
Nancy Lee

Nancy Lee

Ah Kev, sorry you had a bad night.
I get the arthritis pain in my wrists at times but the doctor
gave me something to take for that and it really helps.
Perhaps you could talk to your doctor about that?
And the dandruff? Smile....it means you have hair. :) Right?

I hope you have a good day today and a good sleep tonight.

Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, one more day at 10 mg to go.. So far, no typical signs of past bad times... those sudden onset BM's that were finger sized yet had cramps like I was passing a rhino... In fact, these past two days, my system has slowed down.. Not sure if that's good news, bad news, or an unrelated factor.. Just going to add a bit more fibre to my low fibre diet, and a lot more liquid... like I ain't already practically drowning in liquids. ah sheesh!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me. OK, into the home stretch now On my second day @ 5mg
my system is still sluggish, but other than that, so far so good. Maybe I have made it over the hump..
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, maybe I spoke too soon. Without any warning, I got another episode of spontaneous diarhea, again with those finger sized stool. I called my GI, and got a refill on my pred (just in case). My plan is to continue with the tapering process UNLESS I get more episodes. If I do, then I'll ramp up (again) until it stops, then start tapering off in 2.5 mg doses.
Seems that there is a REAL issue with tapering off of prednisone, and it's not just an 'urban' legend. I wonder if anyone has analyzed the pros and cons of staying with prednisone Vs changing to Imuran (that's my GI's next option).
 
Nancy Lee

Nancy Lee

Hi Kev..

I know for me getting off the prednisone was equal to quitting smoking! :ymad:
I think I was on, and tapering, or off, and back on, for about a year before everything quieted down.
I'd like to know more about Imuran as my doctor wants me to start on it as well.
So we can throw your question out there and maybe both get some answers. :confused2:

Be well!
Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, now down to 2.5 mg a day (thanks to pill splitters).
So close to the end, and nothing to report. Keeping my fingers crossed. Two days left...
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. First off, thanks Nancy Lee. Very informative article. Hope anyone tapering takes the time to read it. as for me, this is Day 1 totally off of prednisone.. and, like the guy who jumped off the Empire State Building was heard to say as he passed each floor.. "so far, so good". I worked a case today and suffered no ill effects. Hope the next weeks, months, etc go likewise. I also hope that anyone contemplating taking prednisone, or starting to taper off, finds these posts of mine helpful in some way. I'll post again periodically just to keep it up to date with the withdrawal effects (if any)..
 
Nancy Lee

Nancy Lee

YAY! Nancy does Happy Dance!!! :)
This is great news Kev!
I hope the job goes well for you
and PLEASE stop back in and keep us posted...
or just visit....anytime!!!

Hugs~Nancy
 
K

katiesue1506

Hey Kev! Congratulations... I get off of mine this Saturday... first time since October! I can't wait and hope to be well. But congratulations again, and I hope everything is well for you as well.
 
R

ruthymg

Guest
Its good that we all have access to this site with so many people sharing their experiences. I just tapered my prednisolone down and suffered the side effects, didn't think I had much choice, didn't realise I could have tapered slower or increased my dosage until things quietened down. I haven't taken prednisolone now for over 12 months but I wouldn't have known about the tapering if I hadn't read it here. As far as the Imuran goes, it sucks, or at least I think it does. I am sure you have read some of my moans about it lol
I feel really tired and crappy all the time on it. I seriously could sleep for England and I ache all the time and the sore throats, well, lets just say, I am sick of feeling as though my throat has been sliced and then filled with phlegm, its disgusting. I hear some people feel fine on it though. Its great news that you have started working again Kev and that you have successfully managed to come off the pred (touch wood), glad things are working out for you.


Ruth
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. Welll, thanks for all the kind words and well wishes. If my little diary of starting and then tapering off prednisone helps somebody else, it helps me too. You can't control the negative things in life, but you can try to see or turn it positive. I couldn't avoid going thru the starting side effects, nor the withdrawal issues.. but this way, I've shared it with others, and somebody out there starting to take it, or starting to taper off it, might get some idea of what might lay ahead of them.. or at least know they are NOT alone. sometimes see this illness as one of the 'loneliest' diseases I've ever heard of. It's just soooo unpopular, soooo totally lacking in chic, right?

As for me, I've just wrapped up another case.. And my boss is impressed.. So Monday I'm sitting down to discuss the possibility of my working fulltime. I'm sort of torn... I could certainly use the extra cash going full time would mean
Just not sure I'm physically up to it. Or that it won't put me into a downward spiral.. Or that IF I say no to the fulltime offer, my part-time work will vanish.. But, que sera, sera.. What will be, will be.. The future's not ours to
see.. (OK, for tonites top prize, who can name that singer?)
 
KCMike

KCMike

Is it Doris Day? This is a guess. I think this song was from a TV show. Kev, I didn't look it up on the net either. When I was a kid, I can sort of remember my mom watching this show.
 
Nancy Lee

Nancy Lee

Yup..Doris Day! :)

I agree Kev..someone just starting prednisone, or tapering, can read your diary and see just what might be in store.
And it helps to know someone else has been there and done that and come through it okay.

As far as the full time...I say give it a shot!
Otherwise you may be asking yourself for a long time....'what if?'
Could you give it a go and if it doesn't work out go back to part time?

Keep up the great progress!!
Hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Well, two people who knew the answer.. They'll have to split tonites prize, courtesy of Cheryl Crow. It's a lifetime supply of toilet paper...One roll???

Ok, bad puns aside.. I have been offered the full time position.. However, (and this may be just a coincidence) Today I had to leave a case and go home.. you all probably can guess why.. It might be just an isolated incident (like, healthy people get diarhea too, don't they?). Anyways, Thurs is my follow up meeting with my GI, so I'll run it by her.. and we'll discuss the incident that caused me to leave work early.. And, I need to ask her (and all of you out there) Is it normal to just feel 'blah' after coming off of pred, or is it more likely the preliminaries of a resurgance of my disease? Anyone been there/done that? I don't feel like it's a relapse, more like a repeat of 'normal' me pre prednisone (if that makes any sense).. Anyone care to share a view?
 
Nancy Lee

Nancy Lee

Hey Kev...I'll take a free half roll of toilet paper anytime!! :ylol2:

Congrats on being offered the full time position.
Yup..'regular' people have off days as well...complete with the 'runs'.
Of course talk it over with your doc and get her take on it.
I remember feeling kinda blah when I first went off of the prednisone....
and telling my doctor, and he explained that was normal
because prednisone makes you feel so good...even better than the 'normal' guy.

Keep us posted!!
Hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. Had the follow up with my GI. She's glad I'm off the pred., and considers my personal blah feelings and the isolated Big D as just a normal situation, nothing to lose sleep over. however, she strongly cautioned against my tackling full time employment at the moment, and also has strongly advised against quitting my smoking habit. she's ordered more blood work (another trip to outpatients) and said we'll adopt a wait and see approach for the present. After that little confab, I spoke to my boss, and very reluctantly declined the full time offer. The upshot, boss will hire a full time person, I will continue to work part time, and hopefully there'll be enuff work for everyone. I'll tell you, I really wanted that full time position, but if I have learned anything these past few horrific years, health has to come 1st.
In any event, I feel more than a little down at the moment. Part due to my having to give in to my illness on yet another occasion, and a great deal due to the issues I have that aren't directly related to Crohns or whatever since my coming off of prednisone. I'd forgotten how nasty day to day living with the aches and pains of my age was while on my wonderfull pred holidays. The arthritic pains, the dry skin, the dandruff.. all those were on hiatus on pred..
I guess I'm a bit depressed, even moody (there's a novelty, a middle aged man who is moody).. I even got into a silly agrument with my better half that lasted the better part of the afternoon, then the rest of the nite till morning.
Over nothing.. Which is completely atypical for me on any given day. Figures
 
D Bergy

D Bergy

Wow, I never had a doctor do anything but scold me for smoking. I did notice that quitting caused me more pain when I was having Crohn's related pain.

I m sure that altering your chemistry with the prednisone and then going off is going to mess with your head to some degree. I would think it would go away when your chemistry readjusts.

I can relate to the middle age syndrome.

D Bergy
 
K

katiesue1506

Hey Kev, yeah coming of the pred I felt blah all week (last week) I had one full prednisone free week and then I had a blood test and it turns out my hemoglobin is back down to 9. I was worried about being put back on steroids, but turns out I'll be heading down the Remicade route. I go for a TB test and chest x-rays in about an hour to see if I can start the remicade and hopefully everything after that is all up hill.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me... The saga continues.. OK, folks, think things are slowly taking a turn for the worse.. My pain levels are inching up, my gas levels too.. I noticed a decrease in the size of my stool the past 2 days, but not (yet) have they turned into those nasty finger sized thingys which were very dark colored (possibly indicating blood from gastro or iluem (sp?) levels, or hi in the colon. I don't advocate smoking.. but I do smoke. IF one has UC, then nicotine lowers the risk of bleeding... however, if one has CD, then nicotine interferes with the absorption/potency of your meds.. tails you lose, heads you lose sort of proposition. As for what comes next, IF things continue to slide, then I'm between a rock and a hard place. My recently found job may go away... and I'm told that my next course of treatment is on Imuran, off of salofalk. Also, I've heard that Imuran can be pretty expensive. If any of my fellow canucks who aren't covered by private insurance can offer ballpark numbers on the cost of their imuran, then I'm all ears. hey, sounds like a great idea for another thread.. like, who pays how much for what, & where.. Or is that too depressing a topic to go into in great detail? Like, I've heard the cost of remicade is really a nasty surprise? Anyone any info of these?
 
Nancy Lee

Nancy Lee

Hi Kev,
Sorry to hear about this backslide with your disease...
One thing for sure..there is never a dull moment when we are diagnosed with it eh?

Okay..my doctor wants to put me on Imuran in September..if I make it that long on Asacol alone.

Being in show biz and self employed we have no coverage and I am in Canada as well.

Soooooo, when I was diagnosed we had to do something fast!!
Asked the doc and he recommended Trillium, the government run prescription plan, and they accept everyone!!

Yippee!! It's based on your income and you pay a deductible I think it's 3 or 4 times a year....and it's not bad at all.

Might be worth your while to look into it Kev.
It's a heck of a lot better than paying the full shot.
I have already checked with the pharmacy and Trillium covers Imuran.

Hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Thanks Nancy Lee.. However, I've already looked into it here on the East Coast, and the closest equivalent falls far short.. My option here (sole option) is something known as the Metro Dispensary.. Here's the deal.. you transfer existing prescriptions, and any new ones, and they absorb the handling fees or dispensing fees that pharmacy's charge.. In short, approx $10 - $20 off the price you'd pay at local pharmacy.. not much of a benefit if you're paying $400 a month for Salofalk.. and I've heard that Remicade costs are approx $3000 per treatment... or $20,000 - $30,000 annually. I don't know what the costs of Imuran run, just heard that its more than Salofalk, but less than Remicade... But that's just a malicious rumor, not hard data. Anyone care to toss in their 2 cents worth.. or should that be thousands???
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, I continue to decline. At the rate I'm going downhill, my continuing to work is pretty much a pipedream. If I resumed taking pred, it could buy me some time.. perhaps allow me to bankroll some money. But I'd need to start now, without waiting to consult with my GI. I don't like the idea, but I don't see any other viable alternatives at the moment. Decisions,decisions

Feeling a little sorry for myself.. and trying to look on the positive. Not easy. I even feel guilty about feeling sorry for myself. Things could be much worse. A friend of the family went to the ER recently complaining of bad leg cramps. The diagnosis? Liver failure, less than 3 months to live. Passed away in less than 3 DAYS!! Funeral is next Thursday. He was literally my age (more/less)
And it was yours truly that persuaded folks not to rush to the hospital ASAP as my sage advice was that someone presented with such a diagnosis needed time to adjust, collect themselves, BEFORE meeting & dealing with friends, etc
BOY OH BOY.. Did I ever call that one wrong. So who am I to complain, right
 
D Bergy

D Bergy

Sounds like a rough time. I don't have any solutions, but I always feel better after I have made my decisions. At least then I feel like I have made some progress.

Three days and gone, that is a shocker. It is a little unnerving when people your own age start dropping. One of my classmates died of cancer a few weeks ago. I still have a hard time believing it.

You are right, lots of people got it worse. Sometimes it does not seem to help the way you feel though. After all, some have it much better also. We are all dealt our cards. All we can do is play them best we can. I always manage to find something to complain about, no matter how good or bad I feel. Sometimes it just feels good to whine a little.

The guilt, however, is unacceptable. Guilt should not be squandered in this manner.

If you take a couple of fish over your limit and get away with it that may warrant some guilt. But if you eat the fish you will feel better.
Guilt should only be use when you get away with something. It is a more positive use of the guilty conscience. Far more rewarding also.
The worse that can happen is you get caught. Then you have something you can complain about. See how well it all works out?:)

D Bergy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me, a personal diary.. OK, the saga continues. Here's my update. Back on prednisone, did a week @ 40 mg, then another week @ 37.5 mg.. Problem is, my flair (or whatever) isn't responding.. at least not so far. I see my GI in about 2 weeks time, by which IF I continue to taper I'll be down to 30 mg.. But I am beginning to believe that 40 wasn't a hi enuff dosage this time and that I may require a higher dosage. Anyone else experience anything like that with pred before.. Almost like my body or my disease has built up a tolerance... Two weeks really isn't a long time to wait to see my GI, but it sure feels that way... And I'm not looking forward to getting worse And if my symptoms continue to get worse, then I may not be able to work, or even keep my job. I know, all of this sounds pretty negative, but I really am trying to keep a positive attitude... Just wish my body would co-operate and start to show some sign of improvement. Hard to be positive when all of the symptoms are indicating that I'm declining, and continuing to decline (if you know what I mean?) So, let me repeat.. Anyone who has lived the old pred rollercoaster... have you ever had similar experiences. Love to hear from you.. (either way)..
 
Nancy Lee

Nancy Lee

Hi Kev,

I know it's hard to stay positive when you're on the prednisone rollercoaster.
Two weeks can be quite a wait if you are on the down swing of things...
Maybe you could call the doctor's office and ask them if there is a cancellation could they schedule you in sooner?

It's worth a shot so you don't have to wait as long when you are not feeling up to snuff! :yrolleyes:

Healing hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Hey, thanks Nancy Lee.. Yeah, I've already tried that.. but with over a 1000 patients, my GI is busier than a 3 tailed dog in a room full of rocking chairs. And, in all honesty... two weeks (and counting down) isn't really that long to wait.

No, I just have to stay positive, keep good thoughts, keep behaving myself, and hope that this (fortunately, so far) slow spiral downward either stops or stays at this rate until I get to see her..
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. Well, I continue to deteriorate.. the pred magic just isn't working this time. I've called and called my GI, trying to find out if I should take more pred, or continue to taper.. So far, she hasn't returned my calls. Anyone who has gone thru a similar event with pred, I'd love to hear your suggestions.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me, a personal diary.. OK, finally heard back from my GI, but not the news I wanted to hear. Plan is to increase my dose of pred, and stay up at that level for 2 weeks.. However, if this decline doesn't stop in the next 6 days I am off to the hospital for MORE pred via IV... even if I have to go via the ER.
Why via the ER? Cause my GI is off to TO (oh, for those not in the know, TO = Toronto, Canada) for the next 2 weeks. Really po'd (for those not in the know, po'd = pissed off) by the news that I may spend another birthday in the hospital.. Why? Cause the 4th leading cause of death in Canada is from diseases contracted within hospitals... 12,000 people die from this each year

Boy, am I ever being a baby over this.. Think I'll go suck my thumb for while
 
Nancy Lee

Nancy Lee

Chin up Kev!
Tell yourself this time the increase is going to work and you won't have to go to the hosptal.

Keeping my fingers and toes crossed for you.

Hugs~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Thanks Nancy Lee...

I know I shouldn't let this get me down... but knowing it and feeling it are two different beasts... Perhaps my acceptance of my disease wasn't as deep as I thought it was. It's just that... you do what they tell you to do, you take your meds, follow your diet, get your supplements into you, live like a freakin 'monk', and work your plan. And the plan seems to be working.. looks like you'll get better, or reach a nice plateau.. then it all goes out the window without warning, rhyme or reason. I'm finding this latest setback a little hard to swallow... Or maybe I just feel like whining and complaining...

See? that's the 'kicker'. Before this, I was never a whiner or a complainer..

I need to see if I can find the real me buried within this old fellow someplace
 
Nancy Lee

Nancy Lee

I understand all to well Kev. But the old you is still right there just beneath the surface. I've had it happen time and time again. Things seem to be on an upswing and then bang for no rhyme nor reason...it's all gone out the window and I feel like crap. *pun intended*.

I can't count the number of times I've gone to my room, put my face in my pillow and screamed "I HATE CROHN'S"

Then later, sometimes quite a bit later, I realize it's one more hurdle...because I ain't gonna let it get me!

You hang tough m'friend...up the pred and hopefully it will level off.

Sending warm healing thoughts your way~Nancy
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Ok, pred side effects. Here it is, 4 AM.. and I can't get to sleep. Could be the stress... the pred has only 4 days left to do it's magic or I end up in hospital.

Que sera, sera...

In any event, my pred sessions are definitely going to end.. 10 more days at this level, then I start the taper process. Don't think there's any need to give chapter and verse on that (unless something extra-ordinary occurs)..

Then it's off pred, off 5 ASA, and welcome to the world of imuran. Maybe I'll do a diary on that.. Any of you experienced with Iuran are welcome to give me a headsup on what a first timer to it can look forward to. thanx everso
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
OK, update.. 36 hours later.. I think (hope & pray) that I'm past the worst of it. Not sure if the pred is finally kickin in (since in desparation I tried ORT Sunday), but things have improved. My 'D' has stopped... at least for the past 36 hrs.. I haven't noticed any significant improvement in pain or gas levels, and those old nasty sounds from my GI system, welllll, they seem louder.. (if anything). But, I do notice some telltale things that make me think the improvement in the past 1 1/2 days isn't a fluke. First off, and this is due to the pred (I think, but it could be from the ORT).. I've been pissing (pardon the term) like a proverbial race horse on steriods.. isn't that how they test for steriods in racehorses? But, from my previous experience, that was something I've come to recognize as a turning point for the better. Not sure how or why, but I've noted that an early indicator of a flare or downturn for yours truly is a sudden bloating.. makes my clothes feel like they were 2 sizes too small, in an overnite.. accompanied by fewer trips to drain the bladder.. or at least a normal number. Then, when things start to improve (for whatever reason) I suddenly have to go and go.. and voila, the clothes aren't tight anymore. It might be just my tilted perspective.. it might be the 'D' dehydrates me, and that's why I go less often.. or it might be that a flare or downturn causes a retention of fluid. I dont' mean to be this issue to death, just mentioning it in passing (so to speak) on the off chance that others have noticed (or will in the future) similar responses/roadsigns.. Does any of that make any sense?

Anyway, if this trend continues, then maybe I can avoid a trip to the ER for a continuous IV infusion... right now, after only 36 hours, it's too soon to tell..
 
D

Dekar

Just recently, I've noticed that I've been bloated after eating anything. The way I found out was because sometimes my jeans completely fall of me and other times it feels like the exact pair of jeans are too small and that they crush my waist. How weird.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
No, I don't think it's weird at all. For years, woman have complained of feeling bloated from menstrual cycles.. But if you stop and consider it, inflamation of the colon is going to restrict or limit the absorption of fluids.. Inflamation also could explain pooling of blood (even if you are not losing blood from the colon) in the abdominal areas.. Children who are starving or dying from dysentary (sp?) typcially display bloated, even dramatically distended abdomens. So whether it involves an inflamed colon, or ileum, or even duodenem (sp?), seeing/experiencing bloating as a preliminary or any stage of a flare-up just makes basic common sense. At least it does to me.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, 3 days (+/-) to go before I see my GI. Last two days I have seen slow but steady improvement. The pred is working, but it definitely doesn't have the 'tah dah' feel to it this time as it did the first time around. Why? I dunno... Considering the amt I've taken in recent history: 1 wk @ 40mg
1 wk @ 37.5, 1 wk @ 35, 2 wks @ 40... But, was my slow response indicative of the effectiveness of the pred, or the nature/intensity of this recent flare-up?

On the (more) positive side of things.. I've noticed literally no side effects of the pred.. no sleep disruption (which I could attribute to the pred), no face bloating... I occasionally feel a little 'testy', but nothing dramatic or 'roidy'..
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me.. OK, just counting down the hours to my GI visit. I know the verdict, and what the next course will be. Trying not to let that get me down.
 
Nancy Lee

Nancy Lee

Keep your chin up Kev and when you get back from the doctor's
come in and let us know what she said ok?

My doctor wants to put me on Imuran...
I'm pondering it, so any info on it would be of help
before I make the decision.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Prednisone and me, think this saga is ending. Verdict from my GI is that I've got few options at this stage... they are: Imuran, else Methrotrexate(sp?), else Remicade... OR another surgery. Trying to avoid the surgery, especially since the last time it was checked, my colon was almost completely inflamed.
(except for the incision area from last resection).. so cutting out the bad bits would mean total resection... Not ready for that just yet, thanks all the same.

OK, so it's imuran.. trial starts as soon as I get the prescription filled. Thats on my to do list for today.. If I can get the 1st pill in me without any allergic reaction, then I start off @ 1 pill a day, check my blood every week for signs of low (too low) WBC or liver toxins.. If the bloodwork is A-OK, then ramp up 1 pill per week till I hit 5... (with continued blood work to check on progress).
Once I hit the 5 pill a day level, and if the blood work continues to look A-OK,
then I stay on them for at least the next 5 years (unless side effects or other
issues force me off of them - at least you come off them cold turkey without issues like pred)... We've discussed the side effects, potential & long term. Its
not a decision made lightly, or easily, but I trust my GI, so it looks like this is the optimal choice at the moment.. As for the pred, I start to taper day after
tomorrow.. decrement by 5 mg for a two week period till I'm off completely. I am to continue taking the Salofalk. so for the next little while I'll be taking a nice little combo of pred, 5-ASA and Imuran. Should have bought stock in a drug company.. If anyone is wondering what to get me for my birthday CASH!
 
D Bergy

D Bergy

Sorry the news wasn't better. Hopefully the Imuran will help avoid a resection.
My gastro says it works well.

Just how expensive is Imuran? I may be buying it in the future. I do have insurance but it does not cover everything. I think you may have to consider quitting smoking if you use Imuran as there is some evidence that it can raise your risk for cancer. This is not too conclusive I guess as Crohn's patients have an increased risk for cancer anyway. At least this is what he told me.

D Bergy
 
V

vikkytoria

Guest
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!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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...
 
H

Heathcroft

Guest
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?
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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.
 
H

Heathcroft

Guest
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!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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
 
soupdragon69

soupdragon69

ele mental leprechaun
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.
 
D

Darkeffx

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.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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!
 
soupdragon69

soupdragon69

ele mental leprechaun
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.
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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...
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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..
 
S

snazzy

Guest
Prednisone

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
 
N

need2heal

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!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
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.
 
autoimmune queen

autoimmune queen

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.
 
You must log in or register to reply here.
Top