Venting – steroids, mental changes, feeling a bit better now

[UnXmas]

Venting – steroids, mental changes, feeling a bit better now

I’ve left a legacy of posts here over recent weeks where I’ve documented the effects of being on steroids for the first time. I’ve made anxious posts about everything from the stress of seeing new doctors; the effects of prednisone on cortisol levels, mood, weight loss and hair growth; and posted how much better it’s made me feel in terms of mood, energy, and actually slowing diarrhoea (to think I could have benefited from this long ago!).

Since being on the steroids, I’ve stopped napping during the day. Today I went to bed and had a long lie down. I was feeling so achy and physically exhausted, even though mentally I couldn’t switch off. I feel so much better for it – I needed rest! I don’t know whether it’s a cumulative effect or just that my moods are swinging, but the extra energy has been tipping over into anxiety at times, and I’m finding the lack of sleep and boredom difficult to cope with now.

It’s been so disconcerting for me to experience this because I am used to my moods and emotions being very rational and dependent on what is happening to me – on my circumstances and experiences. I’ve never been a person to experience irrational moods. The only time I’ve had anything like that before is following surgery, when general anaesthesia and morphine have made me artificially euphoric, but then I’m out of it anyway and it’s so short lived, with a clear cause. I get a relaxed lift in mood from codeine, but that’s nothing compared to the effects steroids have had on me. Dealing with it every day is a whole other issue.

I hadn’t been looking forward to reducing the steroids because of the benefits they’re having – they’re doing what I took them for, and having other benefits besides. But now the effects are getting harder to deal with. Now that I am reducing the dose, and I’m happy to be tapering and hope it will even things out a bit.


I just wanted to get this out and have a record for myself too. The medication has been good but I am also happy to taper it for now. Dealing with non-objective moods has been unnerving for me. I guess I put a lot of value on being in control of my mental state. But I’m also reminding myself I’m in control of what meds I take too.

I don’t have any specific questions, but if anyone has any advice, similar experiences, different experiences, I’m always happy to read. The support here and just having a place to write has been a blessing. Apologies for all my crazy posting. It’s really not like me to post so much, but I’ve needed to these past few weeks!

 

[Spooky1]

lol, You remind me of me being on them so long ago. that never resting mind drove me bananas! never got weight on though

 

[MoRymes]

Hi again,

You're probably getting creeped out by me responding to half your posts! I am enjoying following your story because you're documenting it so well. Sometimes it's helpful just to read other people's experiences with the disease and how they're coping with it.

It sounds as whole to me that you've had a good experience on prednisone. It's not meant to be a permanent drug, just to provide some temporary relief. So, on both ends (getting the relief and then being ready to let it go), you seem to be reacting positively.

I actually kind of want prednisone. My doctor has given me entocort since my disease is concentrated in the ileum, but I haven't felt full relief from it. Maybe that's because the entocort hasn't completely kicked in yet (I've read it can take up to 2-3 weeks to feel full relief from it), or maybe (more likely, in my opinion) there are more complications within me then just the inflammation in the ileum. I could use even just a month of being completely normal and having no anxiety with regard to being sick to just sort myself out a bit in terms of my job, diet, lifestyle, and everything else. Anyway, I guess we'll see how it all plays out.

In the best case, you will be able to regain full control over your moods and mental status, and maintain the relief you felt on the prednisone with your symptoms. Maybe your system just needed a bit of a break from the inflammation, and prednisone provided just that.

Keep us updated,

Mo

 

[UnXmas]

MoRhymes: I'm very touched that you are responding to my posts!

I'd be glad if my ramblings are helping some people even a little bit. Maybe people just reading the forum who want to know what it's like on prednisone. Not that they should use one person's experience - or even a whole bunch of people's - to predict what it will be like for them. That's one thing I've learned! But to prepare themselves for possiblities and to feel better knowing how other people cope with simliar side effects., then perhaps it's helpful for people to document what happens to them on various meds.

I hope you get your medication sorted out too. I'm not sure yet what's next for me (have a whole load of appointments coming up over the next couple of months). It usually seems to come down to trial and error. I just glad my most recent trial had worked out for the better so far.

I had another long lie down today and have been feeling very much better mentally. Or maybe it's just an upswing from the steroids! :lol:

Thanks so much for responding and I hope things are going well for you.

 

[MoRymes]

I hope to get this medication situation sorted out as well. My doctor wants me to start Flagyl today. I'm not entirely sure how I feel about that, but I'm trying to view it positively, as an opportunity to kill off all the bad microbes, and then reconstitute with selective strains of good ones while adopting a diet that doesn't lead to overgrowth (most likely SCD). I felt quite a bit of pain yesterday despite the Entocort (though it seemed to come and go). I'm thinking if I still feel pain after a week of Flagyl + Entocort, I'm going to ask for Prednisone.

It's good you're feeling better mentally, steroids or otherwise! I can relate to it being disconcerting to lose some control of that, especially if control of the physical is so erratic, as it seems to be with this condition.

Hopefully those upcoming appointments will lead to some more positive trials.

 

[ryanps]

I was on Prednisone and Flagly and Cipro for about two years staight. Prednisone was both a blessing and a curse. I watched enough bad television at night that I go no longer certain shows on TV (not a bad thing mind you). I had horrible mood swings on that stuff. I wanted to fight with anyone (especially while driving). I called myself the 150 pound Incredible Hulk. Like my 150 pounds would have helped in a fight. At the end, before my surgery, I was 120 pounds. Currently on some Flagyl. Forgot how horrible it makes my mouth feel. Hope you guys continue to get well and have the medications figured out.

 

[UnXmas]

MoRymes: I think it's certainly worth trying prednisone if your doctors are willing and other things aren't helping. It's certainly a powerful medication at least. I don't know much about Flagyl. I'm sure I'll be going through the same process I've just gone through with prednisone with learning and trying some other new drug soon. Good luck with the diet too!

ryanps, thanks for your reply. "Blessing and curse" sounds about right! The insomnia is a pain isn't it? I'm losing weight on prednisone, contrary to my expectations, and I really don't need to. I've even been wondering if weight loss is actually a steroid side effect. How are things going for you now? I hope you find meds that work well for you as well. It seems we all end up trying so many things. Eventually we must get to a point where we find a way for us which maximises disease control whilst minimising unwanted problems. Hope that time comes for you soon.

 

[ryanps]

Thanks UnXmas. I am just on Pentasa now and some Flagyl (since Friday). Of course, it took me 3 surgeries to get to this point. Had to say goodbye to my colon on March 3rd of 2011. Haven't really looked back since. Can't complain as I feel pretty well other than some drainage that happened last Thursday. That started a whole lot of panic in me. Worried it is another abscess or fistula. Will see what my Dr. says when I see him.

 

[UnXmas]

Glad to know your surgery was sucessful. I hope the recent complication is sorted quickly. Sounds like you've been through enough already!

 

[MoRymes]

That's a long time to be on such strong meds, Ryan. I'm glad to hear you're feeling better now. I've got a 30-day course of Flagyl. So far, no side effects, so that's good. Hoping for a smooth month and that the SCD prevents me from having to take antibiotics again (at least for digestive issues).

I checked out your blog -- good stuff. Best of luck on your swim!

 

[ryanps]

Thanks, MoRymes. Toward the end I developed Thrush from all the antibiotics. That was the worst part. I kept losing weight and they kept telling me to eat but everything tasted like garbage.

I'm just starting training for the swim. Kind of nervous as the current antibiotic has wiped out my energy level. Was going to swim 6 miles on Sunday but could only do 3,000 meters (almost two miles). Will see. I am pretty stubborn so that will help a little.