how do I tell my Dr. I upped my prednisone on my own

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/17/2008 11:17 AM (GMT -7)   
I know it was bad of me, but it is helping but at the same time I want to let them know.  Why did I not do this in retrospect, I do not have a good answer, anyhow, now playing phone tag w/the Dr.
 
I need to be honest and just say, I upped my prednisone......rather than hoping he tells me to do what I have already done.  I am so mad at myself, I should have just done it in the first place!!!!!
 
btw, I do want to seek a second opinion so I want to get all my ducks in a row and look like a good patient.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/17/2008 11:49 AM (GMT -7)   
I think he'd have more to say if you decreased your prednisone on your own instead. I suppose you could just say, I didn't feel like it was helping so I upped it a little, I hope this is okay and see what he says. I'm sure the worst that could happen would be a little lecture like "Next time make sure to call the office" but you know your body best and if it wasn't helping I'm sure he wouldn't made the same move. Don't beat yourself up about it :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 6/17/2008 11:56 AM (GMT -7)   
My Dr never ever put me over 40mg prednisone. I accidentally got 50mg from my pharmacy and he was very upset at there mistake. But if you feel your body is processing it well and it's showing significant improvement then your Dr may see it your way. Please let your doc know immediately b/c he may feel angry he was underminded and that may cause tension between you two. My Doc didn't agree when I said I wouldn't take my maintenance RX's but He had to respect that I wanted to go another route that seemed to be helping me more. Please be careful, steroids are incredably strong and potentially dangerous. Remember you must respect your Dr's opinion and experience...
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 5/8/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  6th week flaring;improving; 2bm/day; very little blood
RX/day:  Currently 10mg of prednisone per day. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: food combos, enzymes, good posture, chewing more, etc.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/17/2008 1:17 PM (GMT -7)   
Straight up and honest is best: Doc, I was feeling yucky, so I upped my prednisone - I realize I should have talked to you first and will do that next time.

I'm glad it's helping! It would be awful if you upped it and it wasn't helping...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
30mg Pred until I get set up for Remicade
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/17/2008 1:25 PM (GMT -7)   
thanks everyone, I like your advice!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/17/2008 3:12 PM (GMT -7)   
I agree with dakotagirl...

I have had similar converstations with my Gi. At one point I couldn't afford the meds and was honest that I stopped them because of money. He was great and helped me with freebies and even started calling me instead of making me pay for visits.

Most likely he won't have a problem with it. 40 is where my GI always starts a pred taper. I've been as high as 80.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 6/17/2008 3:20 PM (GMT -7)   
Sorry to go a little off topic,but Kelly,were you actually prescribed a dose of 80mg pred?The reason I ask,is I'm sure I've read that 60mg is the absolute max for any condition,and that's a mega dose as it is!
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 6/17/2008 3:44 PM (GMT -7)   
When I was flaring last I started the pred without my doctor telling me because I knew that he would tell me to take it and I knew he wouldn't call be back untill right before 5 pm which is when they always call me back.( I had leftovers from before) He was not happy about it but I guess I don't really care. I needed to take it and I knew I had to get on a plane in a couple of days.
Jessica 26/F 30mg pred
dicyclomine 10Mg as needed
Citalopram 20 MG
Culturelle once daily
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal)


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/17/2008 4:28 PM (GMT -7)   
You could always tell him you tried calling and couldn't reach him. (You said you were playing phone tag). But yes, be honest and nice about it. It will be fine. Does your current doctor have to know if you are getting a 2nd opinion?
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: symptoms have subsided for the most part
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 6/17/2008 4:29 PM (GMT -7)   
I've put myself on pred too- my GI didn't seem to mind. This was my 3rd time being on it, I started at 40mgs. He basically said "That's the right thing to do... what do you need me for?!?!" As far as dosing goes, I've generally started at 60mgs each time, then tapered. But yes, just come right out & tell him. It's not that big a deal, especially since you've already taken it, you know the side effects, your own tolerance, etc.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 7:25 PM (GMT -7)   
Just tell him you accidentally messed up the doseage and you felt so much better that you kept it that way until you could get ahold of him.

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/17/2008 7:25 PM (GMT -7)   

I would be matter of fact about it. 

I'm a little surprised that your doctor would give you a hard time.  Mine gives me multiple scripts for different medications and I keep them all handy and make a lot of my own decisions and often let him know what I'm doing after the fact. 

It's not like any of this stuff has any street value.  "Psst.  Hey, you wanna buy an enema?"


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/18/2008 8:01 AM (GMT -7)   
lol, yeah I could open my own colitis drug store, Asacol, Lialda, enema's 4 sale!

I talked to my GI and told him I started at 20 (which was true, just left out the part where I put myself up to 40 last week) he said well you can go up to 40 for two weeks and to call him in two weeks to let him know how I am doing or if I get worse to call him earlier. He said that if I am doing better then I can taper by 10mg a week till I get to 20 then taper by 5mg a week till I reach 5mg (which I am on for my kidneys). He was really good and supportive. I said I know I should not have done this w/out consulting you but.........

He was very good about it and said that we may need to start thinking about remicade and I said yes I have been thinking about that and surgery as well.

I have an HMO and need to get a referral, which is not a problem, I can go through my primary but I think I would want to go through my GI anyway I guess and just be up front about it he'll find out anyway (same office). I'll just say well I can have an option of getting on a Humira study and I want to know all my options and that my family is driving me nuts to do it (but in a good way = ) and that I really like and respect him and wouldn't anyone want a 2nd opinion???

Silent lucidity - 80mg is sometimes prescribed for people w/Nephrotic Syndrome (kidney disease) but it is a very high dose.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/18/2008 8:05 AM (GMT -7)   
I'm glad it went well, all that worrying for nothing. :O) I hope you start to feel better real soon, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: symptoms have subsided for the most part
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/18/2008 9:55 AM (GMT -7)   
Well it is your body afterall and you were obviously going with a gut instinct so just tell him you decided it was what you needed to do, it's important that he's aware in order for him to help you monitor what's going on...but be up front with him and don't be afraid afterall you're suppose to be working together in trying to combat this DD.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/18/2008 10:27 AM (GMT -7)   
Silent lucidity- yes i was on 80 about 10 years ago. It took me about 3 years to get completely off of it. Now my Gi usually starts at 40 but 40 didn't work i went to 60 for a short time. I was steroid dependent. Luckily remicade seems to be working for me. Steroids are no longer an option for me.

Beth glad to see things are moving a long for you.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/18/2008 10:29 AM (GMT -7)   
you are right pb4, that is why I wanted to let them know what I was doing, it took me a couple of weeks to come to that conclusion but hey better late than never, right?

At least since this past Sept, I have been very good about taking my meds, listening to my Doc's and also discussing things w/them. Big step for me!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/18/2008 11:42 AM (GMT -7)   
Glad to hear it Beth, it's an important and vital step, if they are able to help you then let them, but always trust your gut instincts as well...

I always know when my proctitis is acting up and I tell them when I need rectal meds...it's clear to them that I'm very proactive when it comes to my health and that I know more then they do when it comes to how my body is feeling.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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