Hi all. I’ve been doing okay for awhile. Myfortic seems to be working well. Last appt with rheumy he was impressed that it’s the best he’s seen me look in a long time (not weight wise …dam prednisone… But the way I feel). Anyway, I had messed around with pred tying to lower it. End result was a sore in my nostril, and 2 sores in my mouth. Just finished healing. My other issue is, I’m embarrassed to say, rage. 0-100 in .3 seconds flat. Granted, there’s ALOT going on yet again. However, I feel like I have no patience…not in the typical sense but throw me into a rage sense. I cry endlessly every night lately too. I start and I can’t stop like someone died. I emailed my rheumy n of course he said we’ll discuss on follow up…ya 3 months from now so that doesn’t help. Just wondering if anyone else has experienced the sores and the rage.
I haven't had sores in my nose but I get them on and off in my mouth and on my lips. They come at randoms times, I just got a little one yesterday. I also get to the point of crying like you explained it. Its like why would I be crying at a blanket etc... it is very weird. I haven't ever gotten a response from my doctor on why that happens. Some days are worse than others..... Hope you get an answer and you start feeling better! :D
I also have gotten the torrential crying thing. Usually I have a sense of what is really bothering me, but this last time I couldn't see any particular reason to be so upset. So i just let it out, and acknowledged it as part of the grieving process. It's possible it's an aspect of the sort of depression that we don't have much control over? I dunno. It often feels good to get it out, particularly if hubby comes and comforts me (which he does if I let him know I need it or he notices I'm upset). I almost always feel better afterwards.
I had a bit of rage once too, a sudden and overly intense reaction to something in relation to my Lupus. Again, I think mine was a grief stage reaction. I've only done it once, so I'm not much help in that area. I've not had sores either.
Hang in there hon. ::hugs:: Don't get too upset at yourself over these things, and feel free to vent here to us anytime.
Dear Jen
Unfortunately weight gain isn't the only side effect for prednisone unreasonable or escalated anger is too. I have had this side effect before when I was on higher doses of prednisone The only advice I can give you is let your loved one know whats going on and try not to talk about anything upsetting until you have a handle on it. The whole count to ten thing has really helped me to slow down and think about what I am about to say before I say it and cant take it back. Deep breaths too. But the biggest help is getting off the prednisone or cutting it back as far as possible. I hope I helped. If you need to bend an ear just ping me. God Bless Julie
I have the sores and the prednisone makes me manic. The up and down mood swings are horrible, I avoid taking it all together.
I get sores and have the rage but have not found that I could do anything about it. It is an impotant rage at this disease with no outlet. I am also a diagnosed bipolar patient that did not know prednisone caused mood swings. If I had I would never have gone near it. I am a self mutilator with a very tenuous hold on it. I pray one day I will at least feel good enough not to feel so bad I need to see my pain to make the pain I can’t see better.
For this reason,as well as some other side effects,I will no longer take prednisone…I realize it’s sorta of a cure all drug when they don’t have answers,and it does work pretty good when all else fails…I have asked my doctor to have this request put in my chart…I have battled lupus and all these crazy meds for yrs…I’m not giving up,I’m just giving up on prednisone or any drug related to it…I’ve had a few really bad flares without it…I’m hanging in there…I’m going to get out of gods way for a change and let him help,I’m still taking all my other meds just not this one…I believe people with lupus are really tuned into what’s going on with there bodies…you will decide what makes you feel good and what interferes with your quality of life…prednisone takes my quality of life from me…good luck friend…
Although probably not all at once, certainly at some point I think we all experience something of those.
I moved to a new state and took nearly 2 months to get to refill on my Prednisone. My husband assured me that I am possessed when not on it.
I am not a candidate for some other meds so this or chemo.
For now I choose this and because of my physiology I actually have lost a significant amount of weight. Not as pleasant as it may seem. Chronic nausea, vomiting and diarrhea as well as looking like I am dying.
As much as I would like to get off of it I am stuck until I get the results some herbal products I’m trying.
It could very well be that the steroid is affecting your mental state but it is probably not as simple as one single source.
I don’t know how long you’ve had SLE but we go through huge ups and downs. Good days are awesome but bad days are like dying a little and we grieve for the loss. A loss that most of those around us don’t know about or see.
I have found that being completely honest with my family is the only way they know what sort of day I’m having.
"Honey, it’s not a good day…
Or "I am having a hard time finding a reason to keep going on…
I know we’ve all thought of that.
If you don’t find support there it’s vital that you reach out to your closest counseling center or spiritual advisor. Feeling proactive in your TX is also a good idea.
Research diet and vitamins, you may be lacking some of the vitamins and minerals that help you feel good that we lose to this disease and the meds we must take for it.
Big hugs and feel better soon.
I have not had the rage problem but the crying extremely common with me.I go in a room where no one is and cry for no reasonAnd I am finding that lately I get depressed very easily.I have both SLE and COPD......maybe with all the medication Im onis causing it,I dont know,but it sure is uspleasant!!!
I too have experienced the highway of emotional volatility…
Not a fun drive through life. I think it’s a combination of the pain, the exhaustion, the feckless existence, and the hopelessness of any real change. It’s the lack of light to show the end of the tunnel is anywhere close. I think the meds play with my emotions. I think that little things that never would have even raised an eyebrow in the past, now devastate me because there’s too much to juggle.
Any sane person would be crazy under these circumstances. It’s normal to feel this way. That’s what I tell myself.
Just recently I experienced the emotional/mental high and low of prednisone which is of course a steroid. On top of everything else that goes with having Sjorgren's and Lupus I don't want to deal with the bad effects of prednisone as well. I was taking a very small dosage and it still had this bad effect on me. I wonder how many people this steroid med. have this bad reaction of rage and depression?