Quirks of this disease

[Kev]

OK, for the last three days + I've been feeling pretty horrible. Talked it over with my GI (as I thought it was my illness rebounding due to pred tapering) and was buoyed by her contention that it might not be relapse, that it could be just pred withdrawal.
Anyway, Saturday nite and most of Sunday were the absolute worst I've felt in many months.. But I don't think (and this may be a forlorn belief) it was due to my IBD. My reason for this is that the critical warning signs in my bathroom trips weren't there. I was (still am) amazed that my BM's were normal, and that there wasn't any blood. It was sooooo bad, that somehow yesterday at it's worst, I missed taking nearly half of my meds.. I apparently opened the pill case, but didn't take the pills out. found them still sitting there this morning. Yet today I feel better than I have in at least a week. go figure... I can't. By everything thats holy I should be feeling much worse. Beats me.. Anyway, so today is a new day, I'm back to taking my meds on schedule, and we'll see what we shall see. This darned disease is really starting to tick me off...

 

[Stuffette]

quirks

Yeah Kev, I notice that craziness with my meds. Sometimes I forget to take them and notice right away or other times don't notice a thing and it makes me wonder if the medication does anything at all. Or sometimes I eat something really bad and I am fine and other days I take one little taste of something kinda bad and I sick for days.

Lot's of days I just feel bad with no noticeable symptoms. Just bad, like today. It sucks feeling bad and not being able to tell anyone WHAT is wrong other than you really can't function properly.

 

[Sojourn]

I don't know what all medicines you're taking, but maybe there's something that's doing more harm than good. It might not be easy to figure out which one if you're taking a lot though.

 

[Kev]

My meds are pretty basic.. 4 Grams of Salofalk (8 X 500 mg) 10 mg of prednisone (2 X 5) and the occasional Nexum for acid stomach. Anyway, this AM (5, to be exact) I was awakened by a migraine... Hadn't had one of those since I changed the way I was taking my meds. Then this AM's BM was not one for the trophy case. But after it I felt better.. least the migraine went away... I was hoping to sleep in until 6:30 AM, but such was not to be. Fortunately, work ended early today, so I can grab a nap.

 

[D Bergy]

I am not familiar with the effects of your medications, but it is theoretically possible rebounding from a immune suppressant may produce a temporary effect similar to LDN.

By missing your meds the immune system maybe rebounds stronger than usual, producing a feeling of normalcy.
Then would likely go back to its normal state after a short period of time. Just a thought that may or may not actually happen.

Dan Bergman

 

[kpratte]

If you happen to miss your prednisone, I could definitely understand the way you feel. For me, I need to get the prednisone at roughly the same time each day or I'm miserable. I'm guessing withdrawal would be roughly the same as a missed dose. I would get a migraine, more issues focusing (mental wise), and just a general lousy feeling.

I also got the same issues before I started doing the sleeping pill for the prednisone induced insomnia. After several days of not very good sleep, I was miserable.

Hope ya feel better.

- Ken

 

[Kev]

Actually, I had my pred.. but I'm down to 10 mg (from 40 mg). The flu like symptoms have gone (thankfully). But I've had another bad BM... worse than the last one. It's the 2nd this week... not a good sign. I'm keeping my fingers crossed that it is just pred withdrawal, and not a flare/relapse. Or, if it is the latter, that my GI will give me the OK to trial the LDN. Failing that, I guess the next step is to start on the metho, ELSE find another Dr to prescribe the LDN... even if it's just over the web somehow.