Last Day Of Pred Today

[BWS1982]

slowly I'm seeing the sides (like all 10 of them) start to fade. Today April 27 is the final day on a dose of pred in nearly the last 7 months. &^%$ing FINALLY.

Doc says it'll be about another month, though, to see if my body will tolerate its absence. We shall see, so far I've seen massive fatigue and an increase in D/cramping the last 48 hours, after seeing great improvements from my last Remicade infusion the 4 days prior to that. Such a roller coaster.

I'd throw a party but I am too tired and unable to eat most of what would be there (and I don't drink). Ah well...

:applause:

:allright:

:thumleft: :thumright:

:emot-waycool:

:emot-dance:

:mademyday:

 

[Lily24]

Hi,

Thats good news....Hope you will be under remission without the preds. Did you see any differences when you were reducing the preds slowly? Like eating habits, appetites, pains and so on?

 

[katiesue1506]

YAY no PRED... I HATE HATE HATE pred... I refuse to take it again. Flat out... that and Imuran.

 

[Jeff D.]

That's good you are off it for now. I hope that in the next month you recover well from taking it. Best of luck and congrats

 

[Methofelis]

Good for you! Hope you'll do fine without it.

I'll be starting my run next week. Blah. It hasn't even come yet and I can't wait for it to be over.

 

[jodes]

That's great. I am currently redusing my pred, i am down to 10mg. But the last three days i have had bad stomach pain, aching all over and of course the bid D. I am new to crohn's so do you think it could be a flare and if so is there anything else that goes with a flare that i should know about.

 

[BWS1982]

Thanks guys.

I'm not in remission still, I've been flaring since August, which is funny, since I started Pred in early October, and I'm stopping it now, still flaring. I'm just tapering because the Remicade was started in Jan., A), and, B) I've been on it so long and doc's not liking the mass sides and he doesn't care much for it in my case anyways-- it's "poison" as it he put it (and I'll concur). I tried to taper it in November (albeit much quicker than this taper), but my colon wouldn't have it, so I slowly had to go up on it, to a point where they thought it was shooting right through me with all the D, at 40mg a day and getting worse, I was put in the hospital in Jan.

I have concurrently been seeing slow changes from the Remicade and the starting of Bentyl, the stopping of Asacol in January, etc...I can't tell what's what for the first 3 months of the year (shotgun therapy is for relief not scientific tellings, but obviously moon face, etc...is from pred), but the last few days I know I can attribute the fatigue/D to Pred withdrawal (most likely) since they're common symptoms. My pharmacist of a mom says that yes they are, but that I'm also telling myself to expect fatigue etc... so of course it's going to happen. Mind over matter, placebo effect, etc...

to Jodes, I would have to refer to the grand variation in the symptoms of each Crohns patients' flares, so your symptoms may be symptoms that another person may even take as improvement. For example, the consistency of one's stool...one with Constipation may get some more loose stool and think "improvement" where as more loose stool for me means "oh great, just when I was thinking I was getting better"....the best advice is that if your general well being deteriorates, it means most likely (but not for sure) a flare is abound, and if it improves, then you could be heading for or maintaining remission. There are exceptions, like when taking probiotics and gas increases before it gets better, etc...

It's like a higher power (or what have you) custom ordered this bad boy for each Crohns victim from the ground up, so we can all feel special and say we have our own unique disease.

 

[drew_wymore]

Awesome dude. I got off that nasty crap last thursday. Super fatigue so I don't think its psychosomatic for you. Hope you improve on the remicade and can stay off pred for a good period of time as in forever =)

 

[jodes]

Thank's benson. Yest i went to a GP who knew nothing about crohn's so he tried to get in contact with my surgion and said he would get back to me. Well no one did and since my last post i have started having bad pain in my left side and over night it has moved to my front as well, so today i will get intouch with my surgion my self and see what he has to say and will let you know.

 

[elp888]

Fingers crossed!

Hi BWS,

Hope your body takes it well!

I'm at 15 mg since today, so 3 more weeks until i'm pred-free.... not noticing
the taper, but little anxious about the next few weeks. Have been on Aza for 6 weeks now, so maybe that's starting to work?

good luck everybody,
e.

 

[Kev]

It may be just my imagination, but I always found that going below 10mg/day was the threshold dose for me to have problems with when tapering. Anyone else?

 

[Kittee]

Great news BWS!!

Kev- I think 25mg is my threshold. Since I hit that last weds my stomach pains have dramatically increased day by day. Today I was literally out of commission on the sofa in a fetal position for 2 hours.

 

[BWS1982]

Thanks again.

That sucks Kittee, did they ever find out a long term plan after the pill cam showed up?

My threshold is unknown for sure but I recall in Nov. when I went crashing down again it was 6 days after I went from 20mg to 10mg a day. Too quick of a jump says this new doc. This time I went from IV steroids to 40 to 35, then 30, and then he reassessed things before going lower......25mg to 22.5, 20, 17.5, 15, 12.5, 10, 7.5, 5, 2.5, done...every 5 to 7 days or so each step, so it was a very slow taper, and I'm glad I've come this far without crashing like Nov, as that happened a couple days before Thanksgiving..

 

[Kev]

Kittee... My bad. didn't elaborate enuff. No, I've run into times when a drop would result in me flaring... played the old up/down pred yoyo game number of times. But, for pred withdrawal (as opposed to flares because my dosage lowered)... the 10mg/day seemed to be the trigger. Like, if I could get down to that level without a flare, then I typically hit withdrawal systems once I went under 10.. does that make better sense to anyone?

 

[BWS1982]

Hey Kev, was worse D a symptom of your withdrawal along with anything else?

 

[Kev]

No, that was what caused my GI to determine it wasn't a flare I was going thru... but withdrawal symptoms. Like, none of the symptoms (aches, pains, a multitude of weird stuff) were like anything I'd seen with a flare-up before.

Like, all of my 'classic' indicators of how my IBD was doing remained stable. My frequency, my BM scale, my cramping, etc.., they all stayed where they were.. But I felt like crap, my moods were off the chart, I had hot N cold flashes like I was going thru the change of life... my skin played havoc with me... I had problems sleeping, and I go from periods of manic energy to total lethargy... whereas typically, when my energy levels went into the toilet (no pun intended, albeit an accurate analogy), they'd take hours just to slowly rebound. During withdrawal, I'd go from feeling totally blah, spent to feeling like I could jump over Everest. The 'unpredictability' of it had me so... frustrated, scared... AND during those feelings, or to add to them, my mood would swing from depressed to giddy at a moments notice. Go figure!

 

[Keara07]

Glad you're getting off BWS...I am stuck at 30 - got hit with a viral flu 3 weeks ago during surgery recovery and when I went from 35 to 35 all the symptoms hit with a BANG so instead of going to 25 I have held at 30 until I see my surgeon Tuesday and sort it out (barely been up let alone online or active). That said, more pred side effects have caught up with me as I taper which I didn't have for the last four months - moonface, middle weight gain (although I have no appetite), acne, hair loss and gain (all in the areas opposite to where you may want this stuff)....so let's hope for some info Tuesday coming....I am afraid as it feels like I just had the friggin surgery, not infected, (well, unless masked I suppose)...I highly expect the 45 minute coughing sessions are not helping...

Oh and the fatigue is wicked, and the D is back - but wondering if it isn't all the stiff they now have me on....penatasa, pred as mentionned, a cough syrup (found one, sorbitol free with the aid of a pharmacist), some snti fungal thrush stuff (GP said last week on flu check in it was caused by the pred usage (?)), tyleonl regimen (500mg every 4-5 hours (without I was hitting 40 temp with the virus), endocet (but only three days left - have to take 2-3 day due to stitches if I want to make it from one room of the house to another), ..think that's it...

what a friggin ride!

On the bright side, I am not sure if I have any CD symptoms right now...hahaha...who can tell?? MAybe the resection worked.

hahahaha