Pred for 10 days and no relief - be patient?

[Cioccolata]

First post so hopefully do this right.
I am flaring badly with stricturing in terminal ileum. I have a new GI has have recently moved. Following MRI, he immediately put me on 40mg of pred and increased my azathioprine in an aggressive attempt to avoid surgery. (Had 2xstrictureplasty 5 yrs ago). In the past have had enterocort.
GI said I would most likely feel almost immediate relief from my pain and after 7 days reduce by 10mg. No relief whatsoever - in fact am worse plus now having side effects of pred. Cannot even drink my enteral feed drink without getting pain, let's not even talk solid food...
Called his secretary and his message back was keep up 40mg dose and go see him at 2 week end. Called GP for more pred who was unhappy that I was not given anything to protect my bones, calcium, or anything to protect my stomach. GI seems unconcerned about everything else including my malnutrition due to not eating solid food for over 2 months. GP ordered vitamin/mineral bloods even though I had asked GI to check. GI's main concern seems to be that he has to get the severe inflammation down ASAP - mentioned biologicals as next step and he will worry about everything else after he has done that.
So - am I being impatient and unreasonable to expect more? Pred is not having any effect except worsening of symptoms and side effects - have I not given it a long enough chance? Should I not switch to enterocort as it helped in past? Should I be more pushy that he does not appear to be looking at other stuff - my general well being and covering me with calcium etc?
Thanks for any advice.

 

[cmccormack5]

hey Cioccolata,

Idk how everyone responds to pred, i happen to respond very quickly with like no sides so im lucky. And no, i dont think youre being impatient at all! Its your body and ultimately you know whats wrong. No one likes feeling like crap and especially when you feel like youre not getting the most from your GI im sure that really frustrating. I know my doctor put me on vitamin D, but nothing as far as calcium.

Dont ever think youre being too pushy with a doctor. you have to be your own advocate. Cant expect doctors to remember everything and i always like to ask questions.

Im not sure, but i know pred works within about 2 days for me. Maybe if it is having no effect, go back after the 2 weeks is up. let the doc know all the problems, and then talk about the options. biologics is probably the next step but im not sure they provide immediate relief like the pred is suppose to. Im on cimzia and still flaring kind of after a month (im not really a fair judge because im abscessing haha). Hope you start feeling better soon.

 

[Cioccolata]

Thanks so much for your reply cmccormack5. Lying awake on pred insomnia at 3.30am was feeling quite lonely!
Still need to get to know this GI - I asked a lot and questioned a lot but then try to put my trust in his experience - have only seen him twice and think I may have unbalanced him also by taking over an hour appointment time with my questions/arguments that maybe azathioprine is actually no use at all after all how can he prove suppressing my immune syst will help.
Adcal is vit D and calcium combined.
Will be a bit more demanding when I see him on Monday. He told me to accept I'm not well which I guess I don't really - I tend to see it as a series of issues that need resolving and therefore want it all sorted out, including my hair falling out and being exhausted.
Hope you are feeling better soon too and really appreciate your reply - thank you

 

[cmccormack5]

hahaha. i loved when i started prednisone during finals last semester, didnt need to sleep more than 3 hours and i felt refreshed hhaha.

You will learn how this doctor opperates, itll just take time like everything else. Cant really rush recovery because your body just goes at its own rate. We all wish we could control it though haha.

best

 

[Cioccolata]

So tomorrow it's two weeks on 40mg prednisolone daily. No improvement in my symptoms whatsoever. Am seeing GI tomorrow and want to stop taking it. I am having nearly every side effect including insomnia, hallucinations, back pain, headache, extreme fatigue, severe night sweats, eye pressure pain, just counting my lucky stars that no acne or puffy face yet...
Can I switch to enterocort without tapering as it's only been 2 weeks? I just don't want it in my body anymore. At least if I were having any relief at all from my pain. Any ideas on what else I can try next if not enterocort? I have severe inflammation and stricturing of terminal ileum.
Thanks for any ideas

 

[cmccormack5]

i have never heard of enterocort or ever used it so i cant comment on that. As far as tapering off, i am assuming you still need too. Tapering off is always the worst for me just because i get headaches. you run risks of even worse things if you dont taper off. I really wish i remembered the name of the steroid i was going to go on if the pred didnt work. it was a cortico steroid that got absorbed in your intestines or something like that which was suppose to have not many side effects.

I would say that best thing to do right now to try and decrease inflammation is to eliminate gluten from your diet. its extremely inflamatory. As far as medications that help immediately though, as far as i am aware steroids are them. Just talk with your doctor about the options as theyve seen the worst of the worst and know it all.

 

[Cioccolata]

Think that is enterocort - also know as budesonide - absorbs in intestine with less side effects and as the Crohn's is terminal ileum it is good option.
Will see what he says. Have been on elemental liquid diet for over 2 months, in the past that has got me to remission - not working this time. Got to the stage where even my drink makes me hurt.
Thanks cmcormack5.