Presnisone and Being Scared!

[Ness]

Hey everyone!

I'm reaching out, here, and looking for any positivity or advice one can give. The interesting part of this post is that I am pretty familiar with what I am going through but can't seem to bring myself together ...

Diagnosed with Crohns in February 2011 with my first flare. Last December, I began flaring again and I'm pretty sure I know what the triggers were ...

I was put on 50mg of Prednisone and tapered, week by week until the beginning of February. I had been using Azathioprine but the docs took me off it due to feeling pretty gross all the time. I bumped into insurance issues and didn't have a medication to roll on to when I tapered last. Inflammation came right back and I feel the taper may have been too quick.

Now, here I am back on 40mg of Prednisone and instead of Aza,
6mp.

My joints hurt, chest pain, muscle aches, back aches etc. I am going to be on a much slower taper this time, I believe. I've heard and read terrible things about presnisone from several doctors and forums. I'm scared because I've been on it since December and its looking like I'm going to be using it for another couple of months in order to take care of business. Possibly close to 5 months, obviously at a much lower dosage by the end of the run.

The depression, anxiety and emotional aspects of this disease really get to me. The prednisone only amplifies it for me and also gets me hyped up and scared for my health as a result of being on steroids for so long.

I need someone or people to tell me I should be all right. I hve a supportive family and girlfriend, I don't take anything beyond Lorazapam sparringly for all of the anxiety associated. The anger behind my condition also fuels me. I'm grateful for many things but also upset that I'm 26 and have a serious health condition. Not to mention all of the other people, even much younger than I, that this disease has effected.

So stressed, financially and, well, literally. I could go on for hours. I just need some support and good advice. I'll be seeing my GI at the end of the week.

 

[CLynn]

Ness, I was in my 20's when diagnosed as well, had my parents insurance as I was going to college, but before I finished their's stopped covering me. I was working full time, so picked up insurance there, thankfully. I was on prednisone for many years off and on, and while I never was and am not to this day happy about the side effects on our bodies from it, I didn't have too much bad at the time from it. At one point I was on 80 mgs, man, I did love the energy buzz I had from that high of a dose. The internet then was not what it is now, so I didn't have as much access to information on what it can do, maybe that is not always a good thing when we are scared enough just of the Crohn's, let alone the meds. We have to take what we have to take to get ourselves feeling better. I know how frightening and frustrating it is, I promise you. But do try and and calm a little, at least we have this forum, where everyone knows and cares!

 

[Ness]

CLynn,

Thank you. I appreciate your efforts to identify, very very much. I'm so new to this and obviously have a long way to go. I would love to get things under control more than anything. I need to find ways to cope and to deal with the disease and emotions. I'm even questioning my career. I am a videographer and producer on freelance. It's a lot of work and stress to take on large projects. The last one partially put me into the flare up and I'm freightened to plan or book out. This includes other things in life such as vacations or trips.

Anxiety has always been an issue for me. The disease and IT do not go well together. Considering you were once my age and in the same place, do you hve any advice for coping, adjusting, or finding ways around the disease? I'm open to hearing anything. I am interested in meditation or any day to day methods that people have found successful.

You are certainly right about the internet. It is both a benefit and a scary place. People don't go online to discuss their Crohn's and how wonderful they feel. It's mostly negativity, which is understandable, but also does a great job of painting a future or self fulfilling prophecies as I may have mentioned in the past posts.

I'm determined to do all I can with change in lifestyle, behavioral, mental, and dietary methods. Anything to keep me away from the cutting blades and a dark path.

Thank you, again. The forum truly does open up my eyes to see I am very much not alone.

 

[CLynn]

I am my daddy's daughter, I am a worrier. I never really had issues with anxiety until a few years ago when I lost my mom, and then again recently a few times. A few years ago I did use Xanax for anxiety, not daily, but would take one as needed. It's a pretty decent medicine to help with anxiety, I know people who take them daily and they are not even Crohn's patients. Meditation is probably another good choice, as you said, I haven't tried it, but I do believe it could be beneficial. Read the book "Eating Right For A Bad Gut", while I don't personally believe there is a "crohn's diet" and especially that one would fit us all, it is very informative on many aspects of our disease and lists vitamins and minerals we crohnies need, I found it very useful. I'm like you, I will explore all avenues other than meds, but will take the meds until I don't need them. If I can find a way to control it with natural, homeopathic, whatever, I would MUCH rather do that. Probiotics on a daily basis is something I am looking into (although this may take weeks to notice the benefit) and chiropractic coupled with acupuncture as well.
Most of all, when the fear and down moods hit, surround yourself with those family/friends who will pull you up out of it and get you laughing again, I believe that is what has kept me sane all these years. Praying definately helps me with my anxiety, had to share that with you as well. You have this forum as well, it can be a great support too!

 

[Astra]

Hiya Ness
and welcome

Don't read anymore internet stuff! We're here for you, anytime. We have a lot of success stories, me included.
I Googled Pred when I was put on it, and I found this forum instead! Godsend.
I was on Pred for nearly a year, and this fab drug saved my life, saved me from the knife and healed me good and proper.
All I can advise is, don't fight the Pred, it's no use, go with the flow, blow into a paper bag if you have to!
I'm an old Crohnie, work full time, stressful job too, but over time I've learned how to manage my illness, listened to my body, rested (a lot) and take each day as it comes, don't dwell on yesterday, it's sooooooooo over!
I've got Crohn's, it hasn't got me!
You're gonna be ok, you've got us
lotsa luv
Joan xxx

 

[CLynn]

Yes. Astra, agreed! It can't beat us if we don't let it! Ness, I have always worked full time too, and went to college full time while working full time to pay for it, lol! Before my diagnosis, was feeling so bad that I didn't pass an upper level class, which made my college career a year and a half longer than it should have been, but I just refused to let Crohn's take me out of it. You can do this, you will be feeling better, promise!

 

[hurla31]

Ness, I feel like i'm in the same boat as you. I was diagnosed just January/12. Was on prednisone 40mg, and started the taper. Recently made it to 15 mg, and had to jump back to 40 mg again. I'm having severe joint pain, and swelling, which makes it very hard to even walk. My GI told me today that its arthritis, but the symptoms will subside when everything inside is under control. I absolutely hate that I'm back on this dose, I feel it makes me crazy. I have been on paxil for years now for anxiety, so i definitely know where you're coming from. I have not found what works for the anxiety, I did find that Meditative yoga helped, but I can't even do that right now. The gym helped me as well, but again, impossible when you're in a flare. Good to know that other people can empathize, and we can all help each other in these times.