Share Facebook
Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone not enough?


 
12-27-2008, 02:10 PM   #91
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Another update:

I'm down to 25mg of prednisone. Some D still (I'm going 4 or 5 times a day significantly and it's usually urgent), but at least I'm not having a bunch of mucus or blood for the time being.

The biggest problem right now, though, is the joint pain which began in earnest yesterday when I started my work week. Work is becomming agonizing. By the end of the work day, like now, my legs hurt so bad I feel like crying. It's not just my knees though. It's pretty much all of my joints and my fingers are extremely important to me. I have to have extremely good fine motor movement to work and having my hands stiff and wanting to curl up is not acceptable.

One of my big concerns for the appointment in a couple weeks is going to be if they don't want to consider the joint pain part of crohn's disease I need testing and/or a referral to a rheumatologist for RA or another auto-immune disorder because it is blatantly obvious thanks to the prednisone that I have serious inflammatory joint issues. 30mg of Prednisone and above = little or no joint pain. 25mg of Prednisone and below = joint pain bad enough to make an 80 year old blush. By the time I finished tapering off of the prednisone I'm going to be in a wheelchair.
__________________
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; 12-27-2008 at 02:13 PM.
12-30-2008, 12:40 PM   #92
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
I totally agree with you Colt on the joint and muscle pain aspects and the need for referral EVEN if they do agree its linked to your crohns you still NEED the right treatment for it!! So dont you dare let that one go!

I had my remicade today and my favourite gastro nurse came to see me. We spent 40mins talking about the letter I gave my cons before my last scope at the beginning of December.

Ready for this???

She told me today that there is research coming out now that shows there are some crohns patients who always have a very very low level of inflammation that cant be seen typically in biopsies or scopes but is in a very thin layer of the gut wall that is NEVER controlled and these patients typically have constant pain!!! Talk about gobsmacked!!

She said she thinks I am one of those patients. She is going to talk to my consultant and get his secretary to request my notes immediately after the holiday and ask my consultant to go through my notes on ALL my clinic appointments in relation to asthma, crohns, IBS, dermatology and rheumatology and link it to the letter I have written and given to him. We both agreed he is very methodical.

She said she was concerned I would pin my hopes on finding something else as an underlying cause but I pointed out to her how much better I am overall and I was looking at this as "tweaking or fine tuning" in an attempt to try and maintain stability longer as every few months I crash and burn and yet again I have been off this time for 3mths.

We also discussed my last 3 scopes and clear results and pred and antibiotics each time beforehand. She agreed totally with me that they obviously help me get better each time hence the clear results otherwise why would they use them for patients? So she is going to reinforce this with my cons too.

She is going to organise an appointment for me to see my cons end Jan/beginning Feb so I will be off my pred a few weeks by then and should be able to work out whether the Vit D and Methotrexate are helping too.

Fingers crossed eh? Will keep you posted but feel so much better in myself after having talked to her today.
__________________
Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
12-30-2008, 02:30 PM   #93
MINI Cooper
Senior Member
 
MINI Cooper's Avatar
 
Join Date: Oct 2008
yikes. when do you next talk to your doctor? I wonder if they will
increase the prednisone for you since you just decreased it.
I'm kind of in the same boat. having pains and diarrhea again on 40mg.
I was supposed to decrease to 30 a few days ago but they told me not to
for now.
And I totally hear you on the joint pain. I only got it when I started the
Pred, and they ignore it as if I'm just making it up! Is your joint pain any better?
__________________
Resident Crohnie
Facebook:
http://www.facebook.com/people/Cassi...lla/1058502591
Shameless Plug:
www.cloverscritters.com
12-30-2008, 06:26 PM   #94
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
For me I'll probably have to continue down to no prednisone, have a nasty flare, convince them to bother with another set of scopes, and be positive for ulcers before they'll put me back on the prednisone. Good times ahead.
01-04-2009, 04:33 PM   #95
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Well, the joint pain is kicking my ass. Due to the physical stress of work (mostly going up and down stairs and bending over in odd positions) it's getting worse and worse. Today after my last run it took me about 30 minutes to get back to the clinic because I just couldn't stand the pain of going down the steps. Every step was excruciating so I just couldn't make myself go any farther and had to sit down. After trying and being forced to sit 3 times I eventually made it down the rest of the steps by sliding down them on my butt. Once I got to the next accessible floor I waddled over to a patient transport elevator and went the rest of the way to the 1st floor.

The odd thing is that my intestines aren't really that bad right now. No more than could be explained by the IBS. Usually my intestinal symptoms correspond with my joint pain. My joints are bright red and clearly inflamed so I know I've got auto-immune inflammation occurring, just nowhere near as bad for my intestines.

I'm starting to look a bit at other autoimmune disorders. RA + IBS would be the obvious diagnosis and would explain the blood work that helped lead to a crohn's diagnosis but it doesn't explain my intestinal inflammation that I've had really badly in the past. As far as I know RA doesn't feature intestinal inflammation. Pretty much just heart/lung inflammation if goes beyond the joints.
01-20-2009, 07:54 PM   #96
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Another update. I went to the GI today. I ended up with a fellow initially this time. Then my GI attending to approve things. The fellow actually listened to me and wanted to know what was up with the crohn's diagnosis considering they hadn't put anything in my notes that sounded anything like crohn's disease. I finally got a chance to explain what things were like pre-prednisone and that changed everything. As far as the fellow was concerned I probably did have crohn's but, as is my opinion on the matter, it's in prednisone-induced remission and the IBS is what's left over. So, my crohn's diagnosis is back with a 'questionable' tag and since it seems to either not be the case or be in remission we're just going to have me come back when it flares up again.

The IBS is doing pretty well. It's much better and we upped my elavil from 10mg to 25mg and hopefully that will knock it out completely.

As for my joints, I managed to get a rheumatology referral out of them which is in a couple weeks. We'll see how that goes but the joints are really my only serious problem now.
02-09-2009, 06:24 PM   #97
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
Another update: Inflammation in my ankle x-ray and I have a vitamin D deficiency. Eerie soup dragon connections continue. Is she the cause? Is it an international conspiracy?
02-10-2009, 04:42 AM   #98
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
HA ha ha ha ha ha ha ha

Me startin to get a complex cause yer becomin my shadow! LOL

Let us know how you get on. How is your wifes IBS? Please tell me thats all she has going on!

((hugs))
02-10-2009, 08:36 PM   #99
Colt
Senior Member
 
Colt's Avatar
 
Join Date: Mar 2008
I don't even remember mentioning my wife having possible IBS. The mystery deepens. How did she know? Is my house bugged?

Her problems are relatively mild. No pain. Just has some diarrhea and constipation issues. A little blood from pushing out hard stools and such is as bad as it gets.

As for me I went into the rheumatologist fiasco in another thread and I'm still pissed off enough about it that I don't feel like repeating the story yet. As for the vitamin d deficiency, it's at 28 so you can expect the doctors to completely ignore it and any possible indication of autoimmune that it's presence has. As in your case, I already take a vitamin d supplement and get more than normal in my diet, and I'm ridiculously pale so my skin absorption of D should be highly efficient. I can only imagine how low it would be without those factors.

Last edited by Colt; 02-10-2009 at 08:40 PM.
Reply

Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone not enough?
Thread Tools


All times are GMT -5. The time now is 10:58 PM.
Copyright 2006-2017 Crohnsforum.com