Steroid induced rant...

I'm finishing up my 6th dex pulse in the last 3 months, which I know is making me an emotional basket-case, so please excuse the "woe-is-me" rambling about to follow... Pred doesn't work, I think I can safely say the rituxan didn't work, so every 2-3 weeks since May, a lovely dex pulse to keep my counts at a safe level. Because of the physical and emotional side effects, I've had to quit my job and move back in with my parents (leaving friends and a boyfriend 8 hours away).

I guess all I'm trying to say is "I want my old life back." Which is stupid, because isn't that what we all want? I'm just struggling to come to terms with my new "normal" and I thought after a few months, it would get easier, but I feel like its 1 step forward, 2 steps back at this point.

I'm trying to find a new doctor up here who's familar with some of the maintence drugs, so I can at least stop the steroid rollercoaster, but that's still a couple weeks away, so until then...I'm pi**ed off at my body. And missing my old life.

Thanks for listening. I'm hoping getting this out in the world will be the impetus I need to finally get over this depression-hump and start moving forward with a positive attitude.

(Also, please forgive all the spelling and grammatical errors; I have foggy-steroid brain...)

The worse part of steroids was my inability to control my irritability. I even knew I was irritable or irrational but just couldn't control myself. Sounds like you have been dealing with ITP for 3-4 months. Iit took me longer than that to accept my "new" normal. On top of that you've had to move away from your circle of friends. Your frustration with dealing with ITP, MD's, RX and impact on your life is very understandable. Beside a good RANT with friends who understand is healthy!! It's difficult to RANT with family because even through the fog of steroids we don't want to show them our darker side and they just want to comfort - it's hard for them to understand the mood swings and anxiety we experience. RANTS are highly encouraged here - most of us have needed to rant from time to time. I think a good rant is healthy, so rant away! We're here for you before, during and after.

i agree ranting is healty! thats mostly what i do here lol and steroids also made me crazy (along with a swollen/acnea face and food cravings) Ive sworn off steroids, refuse to take them now. my hemo always wants to combine them with my ivig and i tell him no-- never again

Rant on...rant on.....it relieves the pressure.
Can't blame you a bit. I hate Dex also.
Hang in there.

Hi Jess,
Big hug from Down Under (o)
I have just come off a short, low dose of Pred crankies. Nobody wants to live with a monster :silly:
I found it helps knowing others' situations can be whole lot worse, & I am much more aware of autoimmune conditions in general.
Pleased you have your folks to support you.
mj

Hey Jess, don't feel to bad, most of us that have had that steroid experience have rants and lot's of them in my case.
I once chewed up and spat out a junior Dr at a hospital because he said something that I didn't like. I must of scared him a bit because he took some blood from me and sent me home to wait for the results just so he could get me out of the hospital. This was totally out of character for me because I am usually a pretty laid back sort of person.

I think we all would like our old life back but I am finding things get easier as time moves on. I hope that you can find this as well.

But anyway rant on as much as you need there is always someone here that understands and can offer some help.

Yes Milly, A big hug from England too because like the others I believe a rant is healthy.

Though I nothing much more to offer in the way of advice though I have been on steroids more than off this year and am ratty person anyway on the whole at times so I cannot blame the steroids - nice though it be.

I have been diagnosed with ITP for 16 years (1994) and yes am given steroids along with ivig in the past. The one consultant retired and now have another consultant and he has his way of doing things especially when thought that platelets were responding to steroids. They did when on the steroids. This afternoon I have had my 3 dose of rituximab and so far been plain sailing on the reaction front as such. BP was low last week. This week temp was up to 37.4 but that was before treatment even began. 37.2 when if finished and only dropped to 36.4 the once throughout. Pretty dull afternoon otherwise so become captivated by the numbers for the mind need to be occupied by something

Yes, fire away and have a good rant. I am lucky and so far I haven't really been affected by the steroids and had them since december on and off. I gain a little weight and had nauseness moments but very little effected. I bought an exercise bike in May and even managed to loose a 1 lb when they put me on 60mg steroids in July. NOw on 20mg steroid this weekB)

Have a good rant and plan something that 'you' like doing.

I came off Dexamethasone 2 months ago after being on the 10 pills a day for 4 days and did 3 months of it and did OK with my weight. But in the last month I have been gaining weight. How long does Dexamethasone stay in our bodies? It seems worse now than when I was taking it.

I had no idea my irritability is due to the steroids!! I assumed it was because I can't sleep on the steroids and that's why I was extra cranky. I just finished a five week course and have to start another one until the Rituxan kicks in. First treatment is next Tuesday. Wish me luck!!

P.S. I'M ALSO NOT HAPPY ABOUT GAINING 10 POUNDS IN 5 WEEKS

Hugs from Chicago!!

Yeh

I just been on holiday for four days in Scotland and put 4lb on. Is it the holiday or could it be steroid along with rituximab? I have kept it down all year on the steroids but banged on 4lb in one week. Holidays do that but could the rituximab and steroids do that too. Do I have a hope in a steady 2lb a week of or am I whistling.....:whistle: :sick: Yes i did eat on holiday but 4lbs.... for 4days. How do I know if it food or if it drug orientated.....

:ohmy: :ohmy:

Apart from water retention which you would know about as you'd suddenly wee and lose it all, steroids only have us put on weight because we eat too much. So unfortunately you can't really blame the steroids!