Just feel like I want to quit!

General
1

David’s hip pain is still bad and we could not get the cortizone injection because the rumatologist thinks he has necrosis due to prednisone use. We went and did a MRI and X-rays but will not know what’s happening until the next appointment. His dr also thinks that his rage and anger may be the result of prednisone.

I know he is sick, I know he is in pain, I know he is mean because of all of these things and the side effects of the meds but it does not make it any easier! I have just been feeling like I can’t deal with this. I want to be supportive but am constantly looking at the door which just leads to guilt. I’m just thinking is this it? Is this just what I signed up for? Just constant anger and frequent outbursts, is it just my plight in life to always feel like a trigger for his agitation and a protector of my children because he gets so mad at simple things that are truly not that big of a deal… This is not the man I married. Don’t get me wrong i love him and I know I said in sickness and health but wow I just never imagined the power in those words until now.

I don’t want to make him sound like a bad person as he is such a wonderful man. He used to be patient and reflective. He used to smile and go to the park with us.
I fear that this is who he has become now and my children just have to live walking on egg shells well we all do because he just “cant” handle agitation! He has tried keeping a log of feelings and tried meds for a personality disorder that I don’t think he has. I blame psoriatic arthritis. I blame the pain and crazy meds for taking my husband and best friend away. I just don’t have a warm fuzzy feeling about it getting better and hate that I secretly just don’t want to deal with it anymore. We are 7 days away from our 5 year wedding anniversary and this is how I feel. I just want this to stop and I am powerless to stop it. Sorry for writing a book with no real questions. I just needed to say this outloud and this is the only way I know how.

2

Oh Jtryn2help I am so sorry for your troubles. Is there anyway for you (and kids?) to take a break? I know caregiving can break anyone's back but with an angry patient it is so much worse. I know you are trying everything to keep your family together but sometimes a bit of rest can make a huge difference. Has you husband started therapy yet? Is his therapist aware of the depth of his mood? I am sending you hugs and prayers along with so many questions:-)

3

If I take prednisone it make me have serious anger problems. I can't take it because of the impact on my family. Someone else in my support group had to stop because she almost got divorced over her behavior while on it. If the prednisone is wrecking your relationship, try and discuss with the dr. about changing the meds. I'll bet your husband hates how he is acting as well but maybe can't control it at all.

What sorts of medications is your husband on?

I'm really sorry you are going through this. It is hard to be the caregiver, sometimes harder than being the one with the disease.

4

Thanks for the replies I will list all the meds I know
Diclofinax 75 mg
Celebrex 200 mg
Methotrexate 2.5 mg but it says take 7 once per week
Prednisone 5 mg but it says take 3 per day (this is a reduction from previous dose)
Loritab (as needed)
And remacade

Previously done embryl, symphony, and humaira (hoping remacade works better)

If he gets off the prednisone will he be normal again? Is there another med that can replace it?

5

Thank you for sharing your honest feelings from the caregiver perspective. Marriage isn't always roses but it seems so unfair when it is this hard, doesn't it?

Prednisone (or actually prednilsone for me) makes me a lunatic - but in my case the angry outbursts are better than the incapacitating pain. I have many other steroid side effects (weight gain, swelling in my face/shoulders/arms/neck, cravings/ravishing hunger, hair growth, etc. etc.) but the trade off for being able to function enough to perform basic daily tasks was worth it. My inflammation was off the charts and the steroid got it under control. Now the goal is to have the inflammation controlled with the mtx and continue to wean off the steroid and hope all of the side effects leave as the dose decreases. I have already cut my dose by more than half and I haven't seen ANY reduction in side effects - kind of freaks me out. I currently take 5 4mg pills a day down from 12 pills a day (and apparently prednilosone is a quarter stronger than prednisone?). Dropping down in steroid has caused a P flare and more PsA pain too.

This is all such a balancing act - pain vs. anger vs. P vs. PsA vs. side effects vs. long-term damage from the meds vs. long term damage from uncontrolled inflammation. Ugh. I feel for you and for your husband. I am sure that he doesn't want to be the person this disease has made him. I hope you two can find some joy together to celebrate 5 years.

I hope things improve for your husband and your family soon.

6

This is all so hard for you to deal with and sometimes its easy for people to forget the caregivers and supporters. You need support yourself and some TLC

I maybe upsetting some people here, but I personally believe no one has the right to make you feel bad, unhappy and guilty, whatever illness or drugs they have or are on.

Its very hard to let someone you love know how much they are hurting you but sometimes it needs to be made known. Do you keep these feelings all inside? And just share with us when you’re near the brink? I know you may not be able to voice these thoughts and feelings to David but could you write then in a letter? That can be very theraputic and you don’t have to give it to him if you don’t want to.

Are there any carer support groups in your area? Or have you thought of having some form of counselling yourself to help you cope with the pressures and stress you are under.

I hope you find your way through this together, wish I could give you a hug x

7

Anger and outbursts can be hugely damaging to those around the person exibiting them. As your child's mom, you've got to protect the kids who have no say, are being molded into the adults they will become, and are powerless over this situation. If things are as bad as you say, (and I'm not doubting you) then your hubby needs to know that things have to change. You are an adult and have some coping tools and possibly hard choices, but your kids simply don't. They may not understand constant pain, or the craziness from steroids, so please let spouse know the impact on you and them, and the need to do something to protect them if things don't get better. Anger is DEVASTATING to a kid, and I know this personally. I feel deeply for you and your situation, and you are all in my prayers.

8

Being ill doesn't give anyone the right to be abusive to others. I know that when I have flares I make sure to keep myself in check. Chronic pain is horrid because it's always there. You always feel unsettled because you are always uncomfortable.

David needs to sit down with his healthcare providers and start from square 1 on what types and dosages of medications should be used and any other tools (exercise, medication, etc) that can help him cope with the pain.The side effects of medication need to be taken into consideration when trying to figure out what's the correct treatment.

9

I echo so many above... the journey is SO hard- not only for us with PSA ++++ but for our family and even friends around us. I admire you for being honest with your feelings and would encourage you as well as the others to seek a "healthy" outlet for you- and for the both of you to be involved with.

Counseling can be SO wonderful for you to feel heard AND for the both of you to be able to have a platform or forum if you will- to communicate. We all tend to have different defense mechanisms when trying to deal with things- and I'm wondering if his is being funneled to the anger and frustration he is exhibiting.

I hope you find a balance of "healthy" communication, understanding, support and become united as a team, instead of being driven apart...

10

great post!

11

I think he's been over medicated. 15 mg of Pred along with the rest is a lot. I would discuss these side effects with the Rheum.

Are you home all day along with your husband? Work for me was therapeutic with my exhusband. Being away for some hours of the day made me relax and see things differently when I'd get home.

PsA is not an easy road, and I understand your husband's frustrations. I had trouble accepting my disability. Instead of anger, I cried day and night. My Rheumy gave me an antidepressant and it helped. This is why his dr. needs to know about this.

Praying for strength for both of you, and for peace. Thanks for sharing. Never hesitate to ventilate your frustrations. We understand.

12

My husband and I always laugh about “bitch-tastic” Friday. The prednisone has been hard on me and just on a low amount I snap at people and rant when there’s no need but Fridays on Enbrel day we always laugh about being worst, I didn’t know how bad it really was till I walked in on my husband and brother talking about our upcoming trips with our families together and he warning him and apologizing for my behavior ahead of time. It broke my heart, I never realized it was that bad. After sitting down tonight and talkin about it, he’s stressed but knows its the drugs and I won’t be on the prednisone forever. You have to be willing to rude out the storm it won’t last forever.

13

Tryn, its NOT just PsA, and I'm not sure that he is taking enough predi to cause droid rage and there is nothing else on his "list" that can cause the kind of behavior you mention, unless he is using the loritab in appropriately (and thats not likley.......)

I wouldn't be so quick to discount a "personality disorder" from bariatric surgery to this he has every reason to be "broken" aside from what is happening to you and the kids, this kind of anger has the potential to get very bad very quickly and harm to come to you or more likley himself. You need to have a team meeting, a "counselor" won't do it. He needs to get his meds those he is taking and those he NEEDS to be taking squared around.

Anger is a strong sign of DEPRESSION/STRESS and guess what really gets PsA cooking????

People in a lot worse situations than PsA can control themselves even if there are meds etc pushing them. We are out of high school. Coping mechanisms can be taught/learned

14

Two thumbs up, Tntlamb.

15

Funny, walking on eggshells is exactly how my sisters and I used to describe it…

I too think there is more than one thing going on here. In an odd way, I’ve had a bit of a look at both sides of it.

My Father has had an undiagnosed chronic illness, we now realise probably inflammatory arthritis since I was little (in a way it was far too subtle to be easy to diagnose, but did a lot of damage over a long time). I can tell you that his behaviour wasn’t due to any of the treatments, because he wasn’t taking any.

Most of the time I remember him as angry and extremely controlling (like he’d literally criticise my mother about opening a door the wrong way). Nothing was ever good enough. I must have been told “you’re useless” many times a week for most of my childhood. I realized later it was actually a reflection of his frustration at feeling useless himself. Not exactly easy to be philosophical about that at 7 years of age though.

Because I’ve been the kid in the middle, I’d like to acknowledge that it is not always so simple as gritting your teeth, working through it, and waiting till it gets better (if it does).

I can well imagine how you must feel as you children’s protector, whilst trying not to make him too angry, and then wondering if you protected them enough.

So Anyway… Fast forward and one year ago I suddenly got terrible joint pains, swollen knees, elbows, and fingers, even had a day where my legs went numb. Scary for anyone - but it didn’t take me long to realize it was likely the same thing that had destroyed my dads quality of life (only I had it much worse - yay). It’s hard to explain the fear that I had that I might turn into my father and destroy my family’s life (I have a 3 year old and amazing husband).

So I’ll cut to the chase on a few observations;

The pain can make me incredibly irritable and intolerant, but by the same token I’m finding ways to deal with it that don’t involve being angry at others - its a choice, as long as you have enough support to retreat to the bath (or wherever you need) when things get too much;

15mg of steroids is enough to make me snappy, but certainly not out of control - its different for everyone, I don’t weigh a lot.

Personally I’ve found Enbrel to make a huge difference - to my mood. My joints still hurt, though mostly they work, but it has an amazing effect on both my fatigue and my frame of mind.

Theres a bit of recent research on TNF and depression. Certainly there’s a good correlation between anti-TNF medication and lowered incidence of depression in inflammatory diseases.

So this is a roundabout way of saying… It’s probably a combination of the condition and his propensity to react to it in a certain way.

But the key thing I have to say - the pain and disease does not excuse unacceptable behaviour (even though it may be a trigger).

I love my dad - but never will it be acceptable that he repeatedly told me I was useless. Or the way he treated my mother or sisters. Don’t get me wrong - I still see and speak to them, I enjoy it, and I love them.

I do understand however that I couldn’t accept the same type of behaviour from myself, no matter how much pain I was in.

I’m not sure whether or not a counselor will make the difference without a bigger shock (ie odd things - visiting a poor country in Africa), but I think that if you are in for the long term, finding a way to effective counseling for both you and your husband is critical.

16

Please go to counseling. It helps!

17

I was taking 32 mg of steroids when my Rheumy gave me antidepressants. I was myself again--happy. As a teacher, all of my principals said I had a lot of patience. I did not lose it with the steroids. I just cried. This illness is overwhelming not only to the patient but to the family. People cope differently. My exhusband did not cope well. He saw my suffering and went out for a gun to end it. I left and never looked back. There is NO need to be aggressive. I said no.

My sister got RA and became a loud mouth. Nothing that a pill did not help.

Yes, I have a Psychiatrist, He only monitors my antidepressant. Rheumy gave it to me, Psychy monitors it. Hasn't given me anything different than what the Rheumy gave me, but that is his specialty, that is what he does. An Internal Medicine dr. can give you any of the PsA meds, but you know that is not his specialty and you should end up going to a Rheumy sooner or later. Same thing. We are not crazy, just ill. This brings depression MANY times, and there is nothing wrong with feeling good, and happy! I am.

18

The prednisone can absolutely cause the anger. I have to be VERY aware when on prednisone and can't be on it for long because it literally drives me crazy. Anger, rage, depression - and for no reason other than I'm on prednisone. Please tell his doctor about this - it's not something to fool around with. He shouldn't have to live like this and neither should you.

19

I get this way too, on as little as 4 mg. It's ridiculous.

nym said:

The prednisone can absolutely cause the anger. I have to be VERY aware when on prednisone and can't be on it for long because it literally drives me crazy. Anger, rage, depression - and for no reason other than I'm on prednisone. Please tell his doctor about this - it's not something to fool around with. He shouldn't have to live like this and neither should you.

20

I should clarify that I have depression as well, and pred/depression don't mix well. I get rage at 5mg. It's horrible.