Day 2 Pred... symptoms worse.

[juberdoo]

Hi There,
I'm new here and have been writing in almost every day asking about prednisone. I'm undiagnosed unfortunately. Many of the docs I've worked with believe I may have IBD.

My symptoms include daily loose stools usually more than once per day, watery on occasion. Lower abdominal distension and pain, back pain, severe menstrual irregularity and PMS, some hair loss.

I've had a free/clear colonoscopy early on in this (about 6 months ago), barium small bowel follow through (clear), CT Scan (2 months ago, clear). Numerous blood tests etc. My thyroid levels were low, but within normal range

I've fallen ill (er than usual) while away on holiday with much more diarrhea, abdominal pain, and rectal pain. Fun! A doc here immediately gave me a 5 day, 50 mg script for prednisone. Desperate to feel better, this is the second day of taking prednisone. Unfortunately, my symptoms seem to be getting worse.

I'm feeling quite out of it (high actually), getting headaches, and my abdominal pain is worsening. Could this mean that:

a) I need to give the Prednisone another day or two to see if it will work, or
b) I perhaps don't have IBD (a very well qualified doc will be working with me to investigate a possible GI infection like Candida, Addison's Disease, and Lyme along with looking again for IBD)

Any help you can offer is again greatly appreciated. Sorry for being such a pest.

I'm from Canada and vacationing in Hawaii... the medical system here really freaks me out. I still can't believe that a doc at a walk in clinic would listen to me for barely 5 minutes and tell me that I absolutely have IBD and need to take prednisone and have another colonoscopy immediately when I get home. My doctor at home would never prescribe this without a diagnosis.

Cheers,

Michelle

 

[Rebecca85]

I would give the pred another couple of days to work, then start thinking along the lines of it not being IBD.

And I know what you mean about healthcare in other places, I went to the Dominican Republic, and the local shop was selling antibiotics. Not even behind the counter, right there next to the toothpaste!

Good luck and I hope you get to enjoy some of your holiday at least.

 

[bmeat]

2 days is nothing. you need to give your body time to absorb the synthetic cortisol youre putting into it. your symptoms arent getting worse from the prednisone. make sure youre taking enough of the predisone though to put you into remission. i would even take more if you want to be sure of relief. if youve taken pred before your body has a tolerance to it. you also dont want to not take enough, build a tolerance to it during the taper, and it not be strong enough to get you there. this is especially true if youre taking it by mouth, a lot of it may not get absorbed like if youre taking it via IV

nothing is set in stone, and not every piece of information has been discovered yet. ontop of that, some of things things that science has already reached a consensus about may also not be true. only god knows

if the predisone is going to work you have to get it right, the first time. if you dont, youre wasting your time, your doctors time and just dragging out something that you may have been able to resolve like ive done in the past

what is your weight

 

[Rebecca85]

I just noticed you have problems with your periods as well as your intestines. Have gynaecological things like endometriosis been ruled out? As endos can latch on to the outside of the bowel and cause problems.

 

[juberdoo]

Hi There,
Just to answer a few of your questions.

bmeat - My weight is down to 118, used to be about 138. So, I've lost about 20 pounds during this health adventure.

Rebecca85 - I'm scheduled for a laproscopy when I return home to look for endometriosis. To make things even stranger, it seems as though I'm starting to have some breakthrough spotting over a week earlier than I should. I'm starting to think this may not be IBD.

Thanks everyone for your help so far.

Cheers!

 

[tiloah]

Have you been diagnosed with IBD? I would think with all of your tests coming back clear, your doctor would not diagnose you with IBD. However, that doesn't mean a course of Prednisone wouldn't be worthwhile.

Also two days is definitely not long enough to determine if Prednisone is going to be effective. I hope whatever is going on, they are able to figure it out soon and get you on a treatment course that is effective for you. Good luck.

 

[juberdoo]

Hi There,
I'm undiagnosed. Initially my Doctor really felt that I had IBD, but none of the tests would confirm. He then felt that perhaps it was just too early and that we'd have to wait for it to get worse. Not my favorite approach.

Cheers,

Michelle

 

[tiloah]

I wouldn't be surprised if you did have endometriosis. Thus far it looks like you don't have any evidence of IBD other than symptoms that could be caused by any number of things. (Which isn't to say that you don't have IBD, obviously I can't make that call, just that the evidence doesn't support it at the moment).

I hope whatever it is that your healthcare team is able to figure it out soon and get you feeling better. We also have a subforum for the undiagnosed that's full of wisdom and support.

 

[juberdoo]

Thanks diesanduhr. I think I'll post to the undiagnosed section soon. This has been quite the roller-coaster. I've been sick for about 10 months and my symptoms seem to gradually be getting worse and much scarier.

Though Endometriosis was always a possibility, neither my GP or the Gynecological seemed to think my symptoms completely fit. My body is so completely whacked out. I feel like everything is "off".

Cheers,

Michelle

 

[tiloah]

Yea. Sometimes symptoms don't fit the bill. It might be something completely different from endo. It's important if you're suffering to keep trying to find answers.

I spent months in agony (despite already having a Crohn's diagnosis) because the provider I saw didn't think my symptoms sounded like a Crohn's flare. It turned out I had an abscess that couldn't be healed with medications and had to have surgery. If she had just done a CT scan or MRI when I presented to her, we could have prevented a lot of suffering. It's an uphill battle and a lot of healthcare providers either don't believe your symptoms or don't think they're relevant.