First "real" stint on Pred - is it working????

[StepfordWife]

Hiya everyone. I am on my first "real" stint on Pred (25 mg a day). I have been on this now for 5 days now and not sure what to expect. I haven't had a lot of support from my GI - he just gave me a script about month ago and said to take it if big doses of fish oil didn't work to ease symptoms (it didn't) but I was loathed to start on the Pred (scared from what I had heard). I got really bad last week and rang the head Nurse at our IBD clinic and she said - you had better go on the Pred to get the inflammation down or else it could do even more damage to my intestine. So I did. My joints feel better and it is easier to move around, the pain in my tum is much better but my tum is still bloated up like a pregnant woman and very uncomfortable.

Do you think I am still in "early days" with the Pred and it will get better soon? Do you think I am not on a high enough dose? I am going to arrange to change GI today (he has been useless - the 30 mins the Nurse spent with me on the phone was more informative and helpful than any of my time with the GI - I only got diagnosed this year and am really clueless).

I just want to make sure that despite all the other probs of being on Pred (I have already put on nearly half a stone in weight, am not sleeping well and am anxious) that it is actually helping my gut. Any ideas greatly appreicated. Thanks XX

 

[tiloah]

Are you on maintenance medications? Prednisone is great for getting acute inflammation under control, but that's all it's intended for.

Did your doctor prescribe a taper? If so, when is your dose supposed to decrease?

I think it's a bit early to be making decisions about whether the Prednisone is working or not, especially if you've never taken it before and don't know your body's reaction to it. You are probably (not unreasonably) worried about everything going on so I'd say just try to relax about it a little bit and go with the flow for at least a couple more days.

The fact that you have less pain in your joints and your "tum" is a good sign. I hope the rest of your symptoms follow. Good luck.

 

[Del]

Hello and welcome to this great forum for information and support..
A few months a go i was started on the same med as you plus5 Asacolon plus Imuron.
The Pred was started at 40mg a day for a week and then reduced down by 5mg over the next 8 weeks (Tapering) Did he give any direction to you?
It is a very strong steroid and can almost instant results..most of the time...but you should inquire more from your IBD nurse as she seems better informed.

Side affects include weight gain and insomnia among other things as flare ups can cause us to loose weight quickly.. Give it a few more days and hopefully your body will begin to settle down...
Take care...

 

[StepfordWife]

Thanks so much for your replies Sweethearts. Apart from a huge arsenal of "supplements" (Vit B, Vit D, 5HPT, DHEA, Mastic Gum, HSO Probiotic Formula, Slippery Elm etc) I am not taking any other drug for my Crohn's. Nic, the fact that you mentioned I could be on a "maintenance med" just confirms my lack of faith in my current GI. I was on sulfasalazine but was allergic so it was stopped and then Pentasa which didn't work so was stopped. The current dose of Pred is 25gm a day for 30 days then tapering down 5 mg a day for a few weeks.

I think you are both right - that I just need to try and relax and let things take their course. I am just wanting some relief so much and my stupid GI made some silly throw away comment saying "if the Pred works straight away we know the Crohn's diagnosis is right" and then I said (worried thinking what else could be wrong with me - I was relived that after 7 or so years I finally knew what was wrong) "so I might NOT have Crohns then?" and he said "oh no - you've definitely got it" WHAT!!? I just felt he was messing with me!! And when I thought maybe the Pred wasn't working straight away .... maybe I've been misdiagnosed... Sorry I know I'm rambling but I just feel ill and and a bit lost at sea. Thank you so much for all your support and encouragement - it is greatly appreciated! xx

 

[tiloah]

No worries about rambling. It's not unusual to feel "lost at sea" at this point. It can really be bewildering. All of what you're experiencing and feeling is completely normal.

Take a look around the forum. You can read the experiences others have had. Oftentimes if I have a question I'll see it has been answered before and be able to read more responses (although it's always good to ask again, there may be new or different answers).

I would say more common (and more indicative of Crohn's) than immediately responding to Prednisone would be return of symptoms after discontinuing Prednisone.

How were you diagnosed? A lot of people struggle to receive a diagnosis for a long time, it is much less common to be diagnosed and have a doctor be wrong (although it does happen). Usually a doctor won't make a diagnosis unless she or he is absolutely certain because there are life long implications of it. I do think if you are "officially" diagnosed with Crohn's you should be on a maintenance regimen. Although that is of course the call between you and your doctor. If your doctor is prescribing Prednisone there should be something in mind to kick in and keep the inflammation at bay once you have weaned off of it (usually Prednisone is used to give a maintenance medication a chance to start working).

I hope you find a treatment regimen that works well for you and you find a doctor you have confidence in. Welcome to the forum.

 

[StepfordWife]

Thanks Darl. After 7 years of my general pract saying I had IBS I said I wanted a referral to a GI. He did and endo/colonoscopy and found ulcers in my small intestine. That's when I got the diagnosis. He vaguely mentioned some other drug I would go on after I finished with the Pred (immunosuppressant I think). I have read a lot of stuff on the forum, particularly about the Pred and diet and have found it all really helpful. It is so hard to get into see my current GI - it's been about two months since I last saw him, and next appointment in 3 weeks (I'm going to cancel and find someone else). I've made an appointment with a Dietitian who deals with Crohn's to get some ideas for that too. Thanks again for your kind words and help xx PS I love your duck (I'm a huge fan of poultry!)

 

[tiloah]

Hehe! Maybe keep the appointment with the current GI. That doc can make some recommendations until you find someone else. At least where I live it is incredibly difficult to get in to a GI in a timely manner. I feel like us Chronies aren't given priority over 50 year olds scheduling their first scope. And maybe we should be?

 

[SarahAnne]

Amen to that! I got so tired of waiting 3-4 weeks for an appointment with my GI when I'm cramping, vomiting, and having so much diarrhea that I can't walk. And when I go in the waiting room, it's nothing but constipated old people. And they all look at me like I shouldn't be there!

 

[StepfordWife]

Hi SarahAnne Honey! On Monday I bit the bullet and rang the GI and he at least was prepared to speak to me over the phone. He said to up the dose of the Pred to 37.5 mg (1 tablet in morning, half a tablet in afternoon) and that he would try and ring me (not holding my breath!) next or the following week. I will keep my appointment with him mid/late November - that's his last chance Baby to wow me (by "wow" I mean "actually do/suggest something helpful/explain options"!) Ahhhhh - just to be a "constipated old person"! So much easier (give 'em a bottle of prune juice and that's gotta work!) xx