Share Facebook
Crohn's Disease Forum » Support Forum » 2 Simple Blood Tests


 
08-18-2008, 04:11 PM   #1
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
2 Simple Blood Tests + Prednisone Experiences

Well I finally established primary care using my wife to get access to the university clinic.

I made an appointment and went in. The doctor went over a brief history with me and strained the point that all he could do was put me back on prednisone and flagyl and that's not a sustainable solution and I need to find a way to get access to a GI.

So anyway, since we can't really do a colonoscopy or anything we're stuck with my new chance at treatment resting on a CBC and an ESR (He needs to have something to prove I'm actually sick and that's all he has access to). If those come back positive he's going to call me this afternoon and call in some prescriptions for me.

Having my chances at receiving care based on just 2 blood tests is driving me nuts. The waiting for that call is killing me.

I keep thinking "What if for some reason they come back negative?"

I mean, I could be crazy. There could be nothing wrong with me and my prior positive results 6-7 years ago were all just a coincidence. What if for some reason I'm just not having inflammation for a few hours? I don't know.. SOMETHING is going to go wrong here.
__________________
Certified Medication Aide, Certified Nurse Aide, Phlebotomist, and Resident Cynic

Meds: Prednisone, Pentasa, Vitamin D & Calcium, Atenalol, Darvocet

Current Issues: Crohn's inflammation primarily of the upper GI (duodenum and up), Tachycardia, Osteoporosis

Current Stage of Grief: Anger

Last edited by Colt; 08-26-2008 at 09:47 AM.
08-18-2008, 04:19 PM   #2
butt-eze
Superstar
 
butt-eze's Avatar
 
Join Date: Dec 2007
Location: Maple Valley, Washington
I wish there was a way for the Crohn's Forum to have a medication exchange. I'm sure people on here would be more than happy to get rid of their extra meds that you need.
I agree that it's silly to go based off of those tests.

Please try to hang in there. Let us know the outcome.
__________________
Amy
Crohn's Disease
Humira started 7/10/2008
Committee Chair for CCFA Northwest Chapter
08-18-2008, 04:46 PM   #3
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Basically he's looking for something quick and easy to give him an argument as to why he wrote prescriptions for steroids and narcotics. I just hope he gets it because I don't know what to do if the results are negative.

Maybe I'll be accused of being a drug seeker, liar, or general nutcase. He does know I have bipolar disorder (I really need to keep GPs from finding out about that in the future. I put it on the same charts I was recording my crohn's symptoms on. I screwed up this time) so it's not much of a leap from there in most GPs' minds.

I frankly don't know what to say if they're negative. Offer to do more tests? We've already established that I don't have the money for a colonoscopy. I've been really badly fatigued so I hope at least we end up finding anemia.
08-18-2008, 04:48 PM   #4
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
It's 4:47PM. He said he'd call this afternoon. Does his not calling indicate that they were probably negative?
08-18-2008, 05:22 PM   #5
Isla
 
Can't you ask for the pANCA ASCA blood test?
08-18-2008, 06:17 PM   #6
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
How much does it cost? If it's more than a simple blood test like a CBC I have to pay for it out of pocket. Luckily they discounted the ESR so it was only $20.

Last edited by Colt; 08-18-2008 at 06:21 PM.
08-18-2008, 08:02 PM   #7
katiesue1506
Senior Member
 
Join Date: Nov 2006
Yeah I agree... too bad exchanging meds is illegal... I have 4 Humira pens sitting in my fridge and have been for 6 months
08-18-2008, 09:42 PM   #8
Isla
 
Ya the pANCA ASCA is pretty darn tootin expensive. A lot of private insurances will not cover the test as it is still in hot debate whether they really can tell if someone has Crohns. I have public aid health insurance so they cover anything and everything - sometimes it is nice being poor
08-19-2008, 06:31 AM   #9
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
It's 6:30AM the next day. Someone shoot me. New worry: Could I possibly have put the wrong phone number down?

I doubt it took the lab all day to do it. An ESR takes a fixed amount of time of 1 hour prep time and then a quick count of a few minutes. The CBC could have been done while waiting for the ESR.

This all just leads me over and over to thinking that the tests were negative for some reason (shouldn't be, I certainly feel inflamed), and the doctor's probably just not calling because he doesn't feel like wasting his time with negative results.
08-19-2008, 09:48 AM   #10
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
It's 9:45AM. They opened again at 8. There's really no point in calling because I would still need him to call in prescriptions anyway and I don't want to seem like a hypochondriac or overly needly. I am having a blood soaked tissue each time I have a BM though so my backup plan I think is going to be a stool sample or if necessary *gulp* rectal exam to confirm this rectal ulcer/fissure I've got.
08-19-2008, 11:09 AM   #11
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Oh what I'd do for a bunch of clearly visible mouth ulcers right now..
08-19-2008, 12:27 PM   #12
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
12:30PM. I think I'll call and get it over with before I have to go to bed.
08-19-2008, 12:37 PM   #13
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Ok, I called the office and they're going to page him or whatever to see if he'll give me my results.
08-19-2008, 01:22 PM   #14
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
No sign of anemia.

ESR 10. (Borderline high)

I forgot to ask about white count but I'm going to guess that it wasn't really high or he'd have said something.

Anyway.. this placed me in a position where depending on who the doctor was I could be treated or given the boot.

This doctor decided to jump in and treat me. We're going to do a prednisone dose pack ($4 at wal-mart with the generic discount) and I'll come in in a week and a half for a follow up to see if it's working. I have my rationed darvocet leftovers but he told me to go ahead and use them without rationing and he'll set me up with a long term supply so that I don't have to be afraid of running out.

I waited 6 years, the majority of that time sick and miserable and now I finally have treatment again. Talk about relief. My wife and I just set things up so that we'll have $100 automatically transfered to a saving account each month. This will be my crohn's fund basically. We'll have to live slightly more cheaply but it's not too bad. I'll use it to save up and pay for tests and such. The bank is going to give us 10% interest on the account too. That means 10 months for a 1,000 test, but at least I'll get it eventually.

Last edited by Colt; 08-19-2008 at 01:25 PM.
08-19-2008, 01:32 PM   #15
Isla
 
That is very good news for you!

Sorta
08-19-2008, 01:39 PM   #16
BWS1982
Senior Member
 
BWS1982's Avatar
 
Join Date: Jan 2008
I've got bipolar issues as well, not fun, being cognisant of it means you never know when you're reacting accurately, or overreacting due to propensities of the disorder, at least for me.

Colt, you're going through more than I am, so I wish you the best, you have had it longer, harsher, and without insurance for a while. Keep going, sounds like you're through the worst.
__________________


-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

"Chuck Norris can kill two stones with one bird."

"Men with Spartan lives, simple in their creature comforts, if only to allow for the complexity of their passions." -The X-Files, S4
08-19-2008, 05:23 PM   #17
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
My prednisone dose pack is 40mg once per day for 7 days and then 20mg for 3 days and then 10mg for 3 days. My follow-up is on the 29th. I may even be able to pull off a saving move at work by letting them know that I just started treatment.
08-19-2008, 10:16 PM   #18
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Frankly, if you had a doctor who was aware of the situation and okay with it because of your financial situation I don't think it would really be an evil thing to donate medications. I wouldn't be surprised if some of our doctors would like the idea. Really it would be nice to have a national/international agency to do that kind of thing and coordinate it and ensure safety and accountability. Even for drugs that pharmacies dispose of due to impending expiration dates. It's probably a pipe dream though. Oh well.

Just so you know, if they have the same laws as the US and I'm sure they do, the pharmacy literally flushes them down the toilet. It's illegal for a medical professional to dispose of medications in any other way. There's no procedures to keep the drugs out of the environment, only out of the hands of people searching trash cans.
08-19-2008, 10:56 PM   #19
Isla
 
They no longer recommend people flush their medications down the toilet anymore. This came in part from research a scientist I ended up working with had done. I used to work in a waste water research facility in Idaho their main focus was reducing and eliminating phosphorus in waste water (this is commonly found in automatic dishwasher detergent.) The research the founding scientist had done previously dealt also with extremely high levels of estrogen in waste water and water tables do to the common prescription, birth control.

Though it eludes me what the EPA recommended people do with left over prescriptions. I also saw a story done on this very thing on Dateline or 60 minutes or something.
08-20-2008, 12:32 AM   #20
drew_wymore
Senior Member
 
drew_wymore's Avatar
 
Join Date: Nov 2007
It was all over the news a few months ago. They have found high levels of drugs in the water systems of major metro areas because of flushing it down the toilet as well as people peeing it out of their system.

I second/third/fourth the ability to donate medication. I have a bunch of left over Aza and Prednisone thats just sitting on my shelf doing nothing.
__________________
shamless plug for my website .. http://www.youmakemefeelinadequate.com
08-20-2008, 02:39 AM   #21
BWS1982
Senior Member
 
BWS1982's Avatar
 
Join Date: Jan 2008
Give the prednisone bottle to someone who says you don't look sick. Tell them they're labido pills and that they have to take 5 10 mg tabs/day for 3 months. Then after the 3 months tell them they don't look different.
08-20-2008, 10:02 PM   #22
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
The prednisone made a massive difference in just the first day. It's hard to describe even because it changed some of my basic sensations of being like for example: I feel smaller. Especially at the joints. It feels like I've lost 25 pounds. I feel less stocky if that makes any sense. I had a ton of energy today too. My pain only reached a 3/10 and only then as my dose was wearing off and I was having a BM.

It seems like I must be crazy to be feeling this drastically different with less than 24 hours on the prednisone but frankly I don't even care if it's a placebo effect as long as I feel better. I haven't felt this good for as long as I can remember. Life's different. I just can't really describe it all. I just feel smaller, lighter, faster, and just generally less bogged down. My intestines just kind of disappeared from my perception. They used to feel like a big weight that I carried around in the center of my body.

The only significant down side is that I have 2 broken teeth that were being protected by inflamed spots on my gums covering up cavities and the prednisone exposes those cavities so that food can get in and I have to clean them out if I'm not really careful.

As far as side effects I've had a little bit of jitteriness and elevated heart rate (96 while resting) for 2-3 hours after taking my dose. I think that's it. My appetite hasn't become insatiable yet and I don't notice the beginnings of acne or anything.
08-20-2008, 11:04 PM   #23
BWS1982
Senior Member
 
BWS1982's Avatar
 
Join Date: Jan 2008
That's great, mostly all the pluses that pred can generate.
08-21-2008, 08:10 AM   #24
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
I remember responding well to prednisone when I was younger too. My crohn's is just so inflammation focused that it fits well. Maybe I'm wrong though. Like I said, I've had a small sample to survey from so far so it may have been an anomaly.

Today wasn't as good as yesterday. I've had some joint pain, some intestinal discomfort (3/10), and I'm not as energetic as I was yesterday.

There may be a few other factors in play though. The weather is terrible for one. It's all gloomy and rainy. Low air pressure is likely bugging me and making up at least part of the joint pain. That, and I was feeling so energetic yesterday that I stayed up all day and only got 3-4 hours of sleep before heading off to work and I only got 3-4 hours the day before that because I was running errands all day.

One good thing is that my bleeding has stopped and my anal fissure/ulcer seems to have finished healing.

Last edited by Colt; 08-21-2008 at 08:13 AM.
08-21-2008, 09:23 PM   #25
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
I'm really not feeling well today. I think it's just the exhaustion. An average of 4 hours of sleep over the last 3 days. I keep getting woken up or kept up by my wife because she's upset about something or wants to go do something.
08-21-2008, 09:49 PM   #26
mommy1st
Senior Member
 
Join Date: Jul 2008
Location: Lebanon, Pennsylvania
You really need to get more sleep, your body needs that time to recover. Is your wife supportive of your illness? I know it's hard when your spouse wants to go do something and you don't feel like it but you want to keep the peace so you just go out of the goodness of your heart but sometimes you have to be a little selfish if want to get better. I hope you feel better tomorrow. Good Luck
08-21-2008, 11:11 PM   #27
butt-eze
Superstar
 
butt-eze's Avatar
 
Join Date: Dec 2007
Location: Maple Valley, Washington
I hope you get more sleep soon. Balancing family and your health is tough. I can't give you good advice. I'm a girl and we're irrational sometimes. Sucks that she's not understanding that you don't need to deal with her moods.

As for the leftover pills. I work in an office where patient who change medications or (sadly) pass away can bring in their un-used medicine. They give the meds to people who can't afford them. They, of course, understand that they are donated medications from someone else.

Amy
08-22-2008, 09:49 PM   #28
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
I think I know specifically what has been going on. Prednisone suppresses your adrenal gland which is where your natural corticosteroids come from. That same suppression is where you're getting most of the side-effects. Well, my over-stressing my body finished off what little resources I had left coming out of my adrenal gland so my side-effects got really strong. I've had pretty much the whole gambit of prednisone side-effects the last couple of days. You're also supposed to take the prednisone in the morning because right after you wake up is when your adrenal gland is at its strongest. I work nights and my sleeping schedule changes on a daily basis. Anyway, I was beating up on my adrenal gland from every angle and paid the price.

I have a 3 day weekend and I just slept the first 12 hours of it so I should be getting better. One thing that worries me though is that my crohn's caused rheumatoid joint pain is gone but now I have osteoid joint pain so I'm a little concerned over if it's just from the prednisone or if letting my crohn's run rampant for 6 years has trashed my bones and cartilage and I'm going to be permanently facing joint pain with no way of treating it other than narcotics. Luckily my doctor is going to spot me on the pain meds because I think I'm going to be taking my darvocet for the joint pain while I wait for the prednisone to finish.

As for my wife, she's not as supportive as I would like but she's completely overwhelmed with everything else going on in our lives. Our baby, her starting school again, and the financial and government assistance judo we're pulling off to make everything work out.

Last edited by Colt; 08-22-2008 at 09:52 PM.
08-23-2008, 03:39 AM   #29
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Just an observation really as I find it more humorous than upsetting, but I was getting up to go to the bathroom and completely unexpected by me I found that my legs alone are not strong enough for me to stand from a sitting position in a chair. I have to use my arms to help now.

I'm just curious, do the rest of you on prednisone run into all these strong side-effects?
08-23-2008, 06:11 AM   #30
Creepy Lurker
Senior Member
 
Creepy Lurker's Avatar
 
Join Date: Jun 2007
I don't seem to get anywhere near as many side-effects as most other people have.

I've gone a little crazy this time, and I always put on weight and get the 'ol moon face. Some muscle soreness as well, and all the skin on the top half of my body becomes very sore - almost like I've been sunburnt. My sleeping gets messed up to.

Other than that, I get it pretty easy.
__________________
...
Reply

Crohn's Disease Forum » Support Forum » 2 Simple Blood Tests
Thread Tools


All times are GMT -5. The time now is 09:13 PM.
Copyright 2006-2017 Crohnsforum.com