Need help/hope

I've been having a really hard time lately with all my Crohns/medication complications. I'm in the middle of a bad flare up--taking prednisone and having serious problems with it. I'm now taking 20mg/day and as far as I know, have 1.5 wks left of prednisone before I start humira. I've been feeling really down/depressed. I've been freaking out about very small things. All my medication is causing fever, night sweats, anger, moon face, increased appetite. I have a lot of work stress which isn't helping either. I also walk into a room and feel like I'm going to pass out because all lights appear really bright. I feel like there is no one to talk to about this disease, because everyone just seems to say "change your diet and decrease stress". I'm also concerned about what happens if I start humira and then it stops working? How does everyone cope with this? I was diagnosed 2 mos ago with Crohns and it seems like things have been getting worse.

Hi Crohnie, maybe your taper could be too fast and your symptoms are coming back? I am surprised they are not putting you on humira before you taper even farther. Prednisone works hard on your body when you are stressed and trust me been there many times. You should get your blood work checked out, you could be low on either iron, B12 and potassium. Stress work is a killer, because you are not healing. Call your doctor, they could help you. Prednisone is not my favourite drug but it helps with my flares. Hang in there ok. When do you go for your TB test for Humira??

Hi Crohnie2....I always have had horrible mood swings and depression while on Prednisone.....I am wondering if it is part of the problems you are having as well....I am so sorry. I can tell you are frustrated....My advice is to try not to worry yourself with "what if" questions....None of know the future, and you won't add one day to your life by worrying....I have a strong suspicion that once you are off the pred. your emotional stuff will decrease.....Hang tight.

Hi Crohnie2,

I want you know that I understand what you're going through. I really do. And I'm very sorry that you're having such a hard time.

I'm new on the forum.
I was diagnosed with CD four months ago and still cannot find the right meds. The GI who diagnosed me said he simply has too many patients at the moment and he can't see me as I would like. I have been having swelling in the left of my abdominal due to blockage. A lot of vomiting, fever, body pains, bloody stool (a lot), really exhausted, extreme, and as you know, uncontrollable mood swings and not to mention depression. I started 40mgs Prednisone daily five days ago along with 3000mgs-Salazopyrin daily and 2000mgs-Omega 3 daily. I've already started to gain weight. I feel angry and ugly.

I am presently looking for another GI who can treat me with some level of dedication and consistency.
If I talk with my present GI today, he doesn't remember me tomorrow. That simply can't work.

I am an Export Marketing Coordinator, an extremely stressful position and I am supposed to be up for promotion but now things may change, in that, I may lose my job since I have been having so many flare ups and absenteeism.

I try to read as much as time will permit and educate myself about my condition in order to maintain awareness of any symptom which may present itself. It may serve helpful if you keep a journal of what you eat and how you feel.

I feel confident that you will find solace on this forum as our friends here really do care and offer a wealth of knowledge and committed support.

The silver lining in our cloud is that that we're chronic not terminal.
Stay encouraged.

Hi Crohnie2 - I'm sorry you're having all those side effects - prednisone really messes with my mental/emotional state, too. Are you able to sleep? I was just recently prescribed a sleep aid because the pred kept waking me up all night, and it has made a significant difference in my ability to cope with this dang med.

And I understand your worry about the humira not working. Last fall my Crohn's flared up after 3yrs of remission, and I had to start the pred and 6mp again. As I'm tapering off the pred I do find myself worrying about what to do if the 6mp doesn't work this time. It's hard to take things one day at a time. But it is encouraging to know that there are many different medications and although things are really bad until you find the right one(s), things will get better when you do.

About the bright lights, do you think it could be possible for you to wear sunglasses to help you eyes adjust to the light better? Say for instance if you worked at a desk in an office, could you walk to your desk and slowly take the glasses off after you get more used to the light?

What helps me in the real world is to tell people what's going on, friends, family, close co-workers, teachers or even my boss so they know what I'm going through. Having them know gives me peace of mind and makes me feel more comfortable. Even if they don't fully understand, most people try to.

That's the only thing I can think of to maybe help for now. Other than that it sounds like you may need to talk to your doc about it. They don't know all of your symptoms until you tell them. Perhaps that will get them to change your dosage or put you on something else.

Hi Crohnie.
I understand your problems with Pred. It made my into a real King Crab (not to be confused with Crabby Relish). All the symptoms can be a terrible stress in tis self. I too am surprised that you are not taking the Pred into your beginning of Humira.
Good luck with everything and don't be ashamed to ask any question you may have.

Awww, that week will pass before you know it. Hang tight - it's almost here. I hope your Humira kicks in quickly and you start feeling better soon.

hiya Crohnie2

I do know how you feel, I've had all that at high doses, but now I'm on 25mg it seems to be subsiding now and things are much easier to manage.
Remember Pred is cortisol which occurs natually in our bodies, and increasing your stress will exacerbate symptoms, easy to say I know, but try to relax, and try a sleep aid like Nytol at bedtime, that works
good luck
Joan x