Aggression! Who am I??

[Squiggled]

After being on and off prednisone for years I realize that one of my most annoying side effects is aggression. I am always up for an argument with the ones I love. I walk around hypercritical of others. I am super defensive of my kids, to the point my hackles go up and I'm willing to fight. I am NOT a fighter lol so it's crazy to me. Please tell me someone else has felt at least a little like this? All I know to do is talk to my family, apologize in advance and tell them not to take me too serious.

[pberggren1]

Unfortunately pred can permanently alter our minds like this. I did get angry at times at the higher doses but once I was below 20mg then things were good.

[Squiggled]

Permanently??? I am not ok with that, I don't like who I am when I act like that. I have never been to counseling, think I should go? Ugh, I feel a bit panicked now, that is not ok :( I am supposed to be on the 40mg for 2 years and I am only into this round 3 weeks....to be honest, I would rather take prednisone for 3 years or something at a lower dose so I can be kind to others. Super sad face :(


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[pberggren1]

Umm....40mg for 2 years? What the heck is up with that? No doc puts patients on high pred for that long. What is your history with pred?

[Squiggled]

Well I started with lupus, took only 5 mg for years. Then started having all the pulmonary issues and got put on 60mg for 2 months, I begged to get off it, so I did a taper and was only off for about a month. I saw a new RA dr that after sending me for biopsy and like 4 other referrals diagnosed me with the wegeners and right away did 40 mg pred, 15 mg mtx and 1mg folic acid. She said I will do this for 2 years. Is that unheard of? Cause I would love to reduce it if so


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[pberggren1]

Yes, that is unheard of. You should be tapering down after a month. Realistically you could be off it in about 4 months from now or even less.

[Squiggled]

Oh, just keep the mtx and no prednisone??? That would be awesome! Hmmmm ok, I will do some research and maybe a


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[Squiggled]

Continue.... Lol approach her with a new plan. It's too bad I have awful insurance and she is the on,y RA dr that will see me


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[pberggren1]

Most people can get off the pred after a few months. I would find a new doc.

[Squiggled]

I will def try, I am so glad you replied to tell me, I had no idea. I am so new to this and there is definitely a learning curve. Good thing we all take control of our healthcare now, not ok the old days when people just blindly accept and respect doctors word as law.


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[pberggren1]

Exactly!!!! We have to become our own best doctors. Never be afraid to ask anything here, no matter how silly or crazy you think it is. We are all here for you. Where are you located?

[Squiggled]

I am in the Seattle area, how about you?

[godgirl]

Couple of things. First, I agree with Phil. 40mg for 2 years sounds wrong. I started in the beginning of Feb with 15mg methotrexate and 20 mg pred. After 2 months, my rheumatologist upped my mtx to 20mg, and we started tapering the pred. I'm at 10mg daily today, will remain so for a month, then down to 9 for a month, then 8, etc. But my treatment plan can always change depending on symptoms, etc. "The Plan" for two years sounds a bit set in stone, and it shouldn't be. Just my two cents! :)

Second, I've found that the additional stress of this is kind of pushing me over the edge. See a therapist if you need to. Seriously. Everyday stress can be enough, but add all this, AND all the meds (especially the pred), and it can be overwhelming. And a result of that can be that you take it out on those you love - they're closest to you and will put up with it. Go talk to someone - you might really need it. I've seen one for years, and her advice and help has been invaluable.

[pberggren1]

I live in Saskatchewan.

[Alysia]

Most people can get off the pred after a few months.
not everyone. I can't get under 5mg. :sad:

[Alysia]

After being on and off prednisone for years I realize that one of my most annoying side effects is aggression. I am always up for an argument with the ones I love. I walk around hypercritical of others. I am super defensive of my kids, to the point my hackles go up and I'm willing to fight. I am NOT a fighter lol so it's crazy to me. Please tell me someone else has felt at least a little like this? All I know to do is talk to my family, apologize in advance and tell them not to take me too serious.

maybe they should take you seriously but in another way. maybe the aggresion is a way to tell of sadness and needs that are unsatisfied, needs for support and understanding.

[Lilly]

I feel that 40mg prednisone is quite a high dose for a long period of time. I was on 80mg when diagnosed, and brought down slowly, but as soon as I was improving. I stayed at 20 mg for awhile, while they were just assessing me completely, and seeing what meds my body was responding to the best. I had a new boyfriend when I was diagnosed, and so I don't remember being aggressive on ANY amount of prednisone...LOL...I was in LOVE!!!! But, I know you want to trust your doctors are doing what is best, but always remember (and you prob already know/do this) that only YOU know your body. If you have a FEELING that something is going on, or you feel that possible that dose of prednisone is too high for 2 years, let your dr know! Just ask and discuss. Prednsone is a great med, but a bad one too! It changes things in your body over time. You can ask your doc what those things are, and your concern. Its not like you are questioning HIM, you are just wanting to be a part of the healing and treatment of your condition, and you want to understand it. I have learned over the years, that I have to stay on 5mg pred. every day all the time. I have been on it for 24years. If I take away that 5mg, I go into a flare! My weird body! Oh well, I just keep on keepin on! I am sorry you are having a difficult time with it. I hate that because you have finally found out you have wegeners before it was too late. What a Blessing. But keep on talkin to us! I went to counseling for awhile because everyone that was giving me advice were family, friends, etc. They all knew me. It was really nice having someone to talk to who just listened and had some really good advice that my family, who loved me, did not have. I would advise you to try counseling if you can. Even for just a little while. Best of luck and so glad you are here with us~

[vdub]

Pred and a lot of other drugs we take can cause irritability, intolerance, and aggression. But, I disagree with Phil on the permanent part. I don't think it physically alters your mind or personality. The only permanence I can think of is that we are susceptible to being on the drugs to one degree or another for the rest of our life. One of the drugs I take is celexa (citalopram), which is an anti-depressant. I think it helps mellow me out. However, there are times when I know I'm being a jerk and I have to walk away.... I try not to blame my behavior on the drugs, tho -- I think that would be perceived as a cop-out.

[Debbie C]

Hi Squiggled, I haven't introduced myself or welcomed you to our " family"....so welcome and glad you unfortunately had to find us. But I am the same way with pred. I used to be a nice person:biggrin1: but sometimes the smallest things set me off and I don't realize it until I do or say something I regret. And I just say it's the steroids talking not me:predrage:,but I definetly am not the same person I used too be. I don't smile as much as I used to . And Phil I HOPE you are wrong that this is a permanant thing :w00t:

[pberggren1]

I could be wrong. It could be the pred, ctx, mtx, rtx, aza, etc. Maybe it is what is called chemo brain. Even when I was med free I know my memory and general thinking was not the same as it used to be. I was much slower at times. I would also find I would get irritated easily by things at times as well. This has not changed, but I have learned to work around this now.

[Alysia]

It can also be because we are sick :crying:

[Dirty Don]

And some of that is residual effects also...much of what we take does some damage, but it can be overcome with practice/training/effort. Waiting for the fly in the room to go away just doesn't work...it'll die before you can rectify its presence! Hah!

[LisaT]

It can also be because we are sick :crying:

The crummier I feel, the grumpier I get... I try not to take it out on others but have to remind myself, or remove myself.

[Lilly]

Me either Alysia.....I've been on 5mg for years, it seems to keep a flare away. Now, I have had a flare on 5mg.....I had Rituxam infusion 2 times and am now in clinical remission. Still on 5mg! :-) If I go off it completely, I get joint pain, nose issues get CRAZY, etc. Boy, this is one crazy disease!

[Lilly]

Hi Vdub, I am definitely not disagreeing with you, but wanted to tell you what I was told a few years back. I was having a difficult time with my weight, and "female" issues. I asked my Dr a ton of questions about my meds. My doctor told me that long term use of prednisone changes something in our pituitary gland, permanently I'm not sure exactly what it is. That could be why I was having a hard time losing weight, and some other issues, he said. He told me it was a medication that was considered a "miracle drug" in the medical community because of how it helps SO MANY things. But It is a strong drug and over time its a double edge sword. I think I may look into it on the computer and see what I find. SO many of us are on it, and will be prob forever, off and on, or for the rest of our lives be on it, like me. I did find a way to lose weight. But Ill tell you what I find if you want me to~

[annekat]

Squiggled, I am in Olympia, about 60 miles south of you. Yes, I've felt the aggression with pred, but more at higher doses, above 20mg., as others have said, and have just had to observe it and try to pull back from it when I do. I think 40mg for 2 years sounds insane. It would be very hard on your body and you might get things like temporary or permanent diabetes from being on that much pred for that long. That happened to my mom from being on it for a much shorter time, and it went away once she got off of it. But she had to shoot herself up with insulin during that time, maybe a couple or three months. I don't know what the likelihood of that is, as I haven't read of it much on here. But I think you should investigate getting another doc and opinion. You might try the docs at UW, I've heard there are some very good ones there, though I don't know what the insurance issues are. I don't have an experienced WG doc myself, and am not very happy with him, but I think the dosages of meds he has me on are typical and usual, and he would NEVER put me on 40mg pred for 2 years or even 2 months. I hope that you misunderstood your doc and he doesn't plan that for you after all. As for getting off pred, some do and some don't. I'm at 17mg. after having had a little flare, was at 7mg. before. I would be happy at this point to get down to 5mg. and stay there, although getting all the way off would of course be better.

[Alysia]

The crummier I feel, the grumpier I get... I try not to take it out on others but have to remind myself, or remove myself.

when I don't feel well I just want to be alone.

[windchime]

I have been raging today and so I wrote a poem about it. I'm sure it's not a correct form, but it does tell a story.

RAGE

Today is a day of rage
Try as I might it stays
My world appears so dark
Things are very bleak and stark

Rage bubbles to the surface
It has no regard for my purpose
I feel like Wylie Coyote on a rant
As I burn and spew forth such nastiness

I realize I don’t always have control
Sometimes the pred takes over and
It takes me to very scary places
I don’t ever want to see again

I don’t recognized myself
When I ‘m raging like a fool
I reign it in and stuff it inside
Only to let it out again another day

Today is a day of rage
I brought it back inside to reside
My world is now a shade of gray
Things are improving as I let it go

I move back to my normal self
Knowing the rage is there
Waiting to be let out and create havoc
Once again I’m in control

[annekat]

Nice poem, Cindy, though I'm sorry you feel the rage like that and the scary feelings it brings. I've thought about you and I'm hoping something will happen soon with your getting an appointment with Dr. Specks.

[windchime]

Nice poem, Cindy, though I'm sorry you feel the rage like that and the scary feelings it brings. I've thought about you and I'm hoping something will happen soon with your getting an appointment with Dr. Specks.

I think the sparking point was the fact that I may not get my long term disability, which I need to live on until SS kicks in. :crying: Then the kids were also little heathens today after school. :unsure: Very uncooperative. Combined and I was combustible. :predrage: Eventually settled down, but then I felt so awful after. I liked the up better than the down. *sigh* :w00t:

[LisaT]

Ugh. I know that feeling. Right when you most need the kids to cut you a break, they add to your stress instead... (But then sometimes they also do and say the sweetest things...)

Thanks for sharing your poem and your feelings.

I'm sorry you had a day of rage... How anyone could deny you LTD... Those issues make me very angry too. The people charged with making such decisions should do so in good faith and often don't. I think many incorrect decisions are made with the knowledge that people will be too sick, tired and broke to fight back. That is why I'm suing the insurance company to which I happily paid premiums for ten years. They covered me for two years until under their policy the definition of disabled changed so that it no linger applied to me (in their skewed view). Health insurance is a peace of mind contract. Its sole purpose is to provide for us in these situations so we don't have to stress about how to survive when we're sick and tired! The Canadian courts have started awarding pecuniary damages (extra money for the insurer's bad behaviour, basically) when benefits are denied and they play rough with the insured. I so do NOT want to have to go through a lawsuit, but that's what they're counting on and it likely pays off for them nine times out of ten! If you're denied we will chat. Was this what prompted the rage, or was it more of a rage at the whole predicament you're in, and that was the proverbial straw? When will you find out for sure? Is there a rule about foul language on here? I'll assume not. Those BASTARDS! :predrage: I hope you're feeling somewhat better getting it off your chest and maybe you'll even get a visit from hyper again.. It's understandable to be up and down right now,go easy on yourself.

[pberggren1]

My brother's girlfriend is fighting ICBC right now. She was in a bad car accident.

[windchime]

Today is today and new one at that. Not up for sure, but cautiously optimistic. I have to behave better for the kids today so I'll suck it up at least this afternoon when they get home. Getting ready to go see the neurologist/sleep study doc. Routine appt to make sure I'm using my little bipap machine, which I do faithfully every night. :biggrin1:

[Alysia]

I think the sparking point was the fact that I may not get my long term disability, which I need to live on until SS kicks in. :crying: Then the kids were also little heathens today after school. :unsure: Very uncooperative. Combined and I was combustible. :predrage: Eventually settled down, but then I felt so awful after. I liked the up better than the down. *sigh* :w00t:

I am glad that today you are feeling better Cindy. I wrote to you on another thread that I love your poem.
when it is about things concerning the gov and authorities, I allow myself to shout on the phone, on the people who are in charge... sometimes it can be useful, and if not, at least I discharched my rage :rolleyes1:

[LisaT]

I'm glad today is a better day. Do you have sleep apnea? Or is cpap machine for something WG-related? I hope you have a good appointment and remainder of the day.

[windchime]

Yes, I have sleep apnea and graduated from a cpap to a bipap a couple of months ago. It does help and I usually sleep well. Kids parents were home early today as they finished their current job plus I took a xanax. I'm good.

[LisaT]

I may have missed something; whose kids? At first I thought you were talking about your own kids; now I'm not sure. I'm glad you're in a good place either way. My kids were monsters at dinner and I actually had to pull them apart when I'm not supposed to be doing anything... :mad1: Got any more Xanax?

[windchime]

Grandkids they live with me. Sorry you are having fun also. :rolleyes1:

[drz]

I could be wrong. It could be the pred, ctx, mtx, rtx, aza, etc. Maybe it is what is called chemo brain. Even when I was med free I know my memory and general thinking was not the same as it used to be. I was much slower at times. I would also find I would get irritated easily by things at times as well. This has not changed, but I have learned to work around this now.

Chemo brain can result in temporary and even permanent changes in our brain function and personality and many meds like pred can and do affect our emotional and cognitive functioning. But they do help keep us alive and functioning better than we would without them. Learning to compensate for these changes is part of adapting and accepting our "new normal."

[drz]

Ugh. I know that feeling. Right when you most need the kids to cut you a break, they add to your stress instead... (But then sometimes they also do and say the sweetest things...)

Thanks for sharing your poem and your feelings.

I'm sorry you had a day of rage... How anyone could deny you LTD... Those issues make me very angry too. The people charged with making such decisions should do so in good faith and often don't. I think many incorrect decisions are made with the knowledge that people will be too sick, tired and broke to fight back. That is why I'm suing the insurance company to which I happily paid premiums for ten years. They covered me for two years until under their policy the definition of disabled changed so that it no linger applied to me (in their skewed view). Health insurance is a peace of mind contract. Its sole purpose is to provide for us in these situations so we don't have to stress about how to survive when we're sick and tired! The Canadian courts have started awarding pecuniary damages (extra money for the insurer's bad behaviour, basically) when benefits are denied and they play rough with the insured. I so do NOT want to have to go through a lawsuit, but that's what they're counting on and it likely pays off for them nine times out of ten! If you're denied we will chat. Was this what prompted the rage, or was it more of a rage at the whole predicament you're in, and that was the proverbial straw? When will you find out for sure? Is there a rule about foul language on here? I'll assume not. Those BASTARDS! :predrage: I hope you're feeling somewhat better getting it off your chest and maybe you'll even get a visit from hyper again.. It's understandable to be up and down right now,go easy on yourself.

I have heard of this happening to other people and think it might be norm for insurance companies once they figure out you aren't likely to recover they stop paying your disability and force you into legal action and then offer to settle or "buy you out" for a fraction of what you would collect over rest of your life. But by that time you need the money, and your attorney will take a large portion of the settlement so they will also pressure you to settle, and the insurance company then saves a bundle of cash and you will be broke again in a couple of years. To them it is just business and their business is to make money and minimize their expenses.

[LisaT]

I've found a good lawyer I trust, thank goodness. Of course she will still take her cut (she will reduce it if they settle earlier in the process before she has to do all the work). I'm quite surprised the insurance company is playing with me, given that they know I'm a lawyer, working for an organization of lawyers who are in full support of me, and that I've done legal research and writing for ten years so I'm more than capable of finding the caselaw in support of my case and the cases in which the courts have awarded huge damages against insurance companies for messing with sick people when they should have paid. I hope and feel that they're waiting for the independent medical evaluation to support a decent settlement offer. If their own expert tells them I'm unable to return to work, they can't afford to take it to trial and argue otherwise. So, I hope and expect that they will settle with me and if not, they will PAY for the stress and headaches they cause...

[Dirty Don]

Go get'em Lisa T...right on!!!!