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freakyschizogirl
03-01-2011, 09:58 AM
Anyone experiencing these? I seem to get whip lash from my mood swings. One minute i'm high and happy, the next i'm down and tearful. Any little thing will set me off. Feel like a time bomb! :sad:

Any tips on dealing with this? I've had a dance with depression before and i dont wanan go there again.

stikker
03-01-2011, 11:54 AM
I flared at Christmas and I went from 7.5 up to 40. I had to take a week off work. I was not fit to be around anyone. I wasted 5 days of vacation time to do nothing but try and stay calm. I could go into a rage in a asecond. It was really bad.

malin
03-01-2011, 10:07 PM
I suffer from the same but it gets better once you are on a lower dose I think.

For me it helps to tell all my family and friends how I am feeling and most importantly, WHY I'm feeling like it, ei. It's because of the pred causing me to have mood swings.

Also, I know this is hard but try to be "objective" when these mood swings happen, what I mean is, try to identify your feelings as being caused by pred, then try to find a way you can identify and separate them from your "normal" feelings.

Does this make any sense? :p

When I get really moody or down, I try to stop and think "Am I feeling like this because of Pred, or am I genuinly down/angry etc." That way, if you end up with an answer saying, it's because of Pred, you can then try to "actively" take back control of your feelings. Try telling yourself stuff like "I will not let Pred make me feel this way" "I will not let it ruin my day" and so on...

I hope this make some sense... :p lol its hard to explain but that is how I deal with it

oaktreehill
03-01-2011, 10:48 PM
I get really tearful at anything!! Was speaking to my boss on the phone yesterday and started getting tearful on the phone.. Yes im very stressed out with work at the moment but to cry for no apparent reason is getting embarrasing!

LisaMarie
03-02-2011, 01:06 AM
I think we all go thru it..I have been on such high doses of pred it is a aweful rollercoaster ride...i try not to make too many important choices (like divorcing my husband because he just can not get it)...He is not all bad but he is not dealing with this lovely disease at all and unless I am on deaths door he choses to ignore it......I told him I need him to be my rock and he told me all he can be is my jelly fish...funny now but not at the time.....pred just makes us go up and down ...That is one reason I came up with the milk dud trick..i can not afford to go off at work...so I pop a milk dud and pray by the time it takes me to chew it and swallow it my brain will have caught up with my mouth and kept me in line....:w00t:....I do not feel like i get depressed ...i just seem to be mad and that is not me...I am usually Pollyanna...glass half full...just my thoughts...hope it helps

Sangye
03-02-2011, 03:13 AM
A couple years ago a neuropsychiatrist at JHU told me that the chemical imbalances that pred causes can easily create the need for an antidepressant or mood stabilizer. Many people had brain chemistry imbalances before pred, and pred will deepen them. The pred imbalances do get better as the dosage is lowered, but it can take several years to get the balance back, and some people's bodies never do. So, some people are helped by taking meds while they're on pred, and some continue to need them after they're off.

The onset of bipolar disorder can be triggered by pred usage. What they've learned about bipolar disorder is that the longer it goes untreated, the worse it gets and it becomes extremely difficult to treat.

freakyschizogirl
03-02-2011, 05:20 AM
Thanks for all the replies guys.

Malin i understand you completely. I do the same, talking to my sister last night she said why are ya so down do ya wanna talk about it. I said theres noting to talk about everything is fine, its the pred.
I do try and rationalise what i'm feeling, hopefully i'll get better at it. :unsure:
Oaktreehill you should have my manager! She'll talk your ear off and BORE you to tears!:sleep:
LisaMarie if he's a jellyfish surely that means he's more adaptable to change? Especially being that Jellyfish are water animals, it should flow over him.:hug2:
And Sangye thanks for than, definately food for thought. I think i need counselling to come to terms with things. I dont think i've fully accepted my diagnosis yet, or the long term prognosis in regard to being on medication for life. :confused1:

Daggar
03-02-2011, 05:52 AM
The "angry" comments made me think of checking the wife's medicine cabinet just to check if she's been mistakenly taking Holly's meds!! Yikes!:w00t:

Seriously, everything that you're saying has been happening with Holly as well -- she can light up :predrage:(redhead) really quick over the littlest thing or she can seem down over not being able to do the things she used to.

Family and friends completely understand how the treatment causes this and she is always reassured that they'll be there for her when she needs them.

Counselling may be a good idea -- we had to meet with a Counsellor while Holly was in ER at the hospital -- standard policy. They helped Holly and the rest of the us come to grips with what the future holds for WG patients and their families.

When were you diagnosed with WG?

JanW
03-02-2011, 06:11 AM
One of the biggest things to cope with are the unknowns with WG. You may not be on meds for life, Sam, or you may. You may achieve a decades long remission, or you may be one of the 10 percent or less who never do. Out there in this great wide world there are many for whom WG is little more than a blip and a daily pill (this is where I'm at at the moment, because I've already had my kids and I'm in remission), but I remember when I was first diagnosed, sick, had joint pain and the rest, feeling as though things would never get better. Now I try to take each day as it comes. And truly I don't worry about small things anymore - which is a good thing.

Sangye
03-02-2011, 02:36 PM
I've seen a therapist weekly since I was dx'ed. I can't even summarize what a difference it's made. It really helps to have someone objective observing you and helping you differentiate pred-induced emotions from the rest. That's just one of a gazillion good things it's done for me.

freakyschizogirl
03-03-2011, 12:12 AM
Daggar i was diagnosed in May last year.

But it had been a possibility for 3 years.

Thinking it might be a good idea for counselling. Will ring my GP asap.

Psyborg
03-03-2011, 12:24 AM
After months of mood swings I finally saw I was having issues after blowing up at my son and then my dog of all things. I got put on Cellexa <sp?> and it made a GIANT difference for me. I also have to honestly say that I was suffering from more depression/anxiety than I thought I was.

Not that I still don't get mad, but what previously resulted in uncontrolled rants is now resulting in momentary annoyance that I'm able to move on from pretty quickly.

Sangye
03-03-2011, 12:55 AM
You brought up a good point, Bob-- that many people don't realize how depressed and/or anxious they feel. Depression doesn't necessarily look like we think, and neither does anxiety.

Psyborg
03-03-2011, 01:08 AM
Well I have to say I'm pretty notorious about not recognizing things. I have an image in my head about what something is and I totally disregard things if they don't match my pre-conceived notion. Like the fact that I had always linked some sort of excruciating pain with shortness of breath, so when I had shortness of breath I didn't recognize it as anything. Doctor made fun of me a bit on that one :p

Not sure i haven't always had some anger issues anyway. The prednisone definitely made it worse for sure, but I've always had a bit of a weird thing where the anger or fury or whatever seemed like it took on a life of it's own. Mind you I'm actually a pretty laid back mild mannered guy, but when it did break it was generally pretty ugly. Prednisone just drug it right to the forefront and made it VERY obviously a problem.

Daggar
03-03-2011, 02:30 AM
So it is fairly "new" having to deal with all that comes with having WG at a "young" age -- and yes 25 is waaaaaay young!

Check with the hospital that you were diagnosed with because the family/medical counsellors they have to deal with long-term illnesses are amazing.

The nice thing is that they usually interact with the doctors and the medical team and know "more" about the respective treatments (drug side effects).

I wish you all the best and I'm sure they'll be able to help you!

Your comments bring up an important question -- I've read that up to 50% of those diagnosed with WG go on to a complete remission.

Has anyone experienced this or know of those who have?

Ginger
03-08-2011, 03:09 PM
Ugh... The Pred-rage..... this is probably the worst symptoms ive had, and all the otther people ive taked to agree....:predrage::predrage:

But the sad thing is, i don't know whether i'm just naturally a nasty person, or if it is the pred! LOL

I'm a redheaded, 15 year old girl.... yah, do you feel bad for my dad? i know i do...

But whats been getting worse is the anxiety. Ive never had an issue with anxiety like i did with anger beefore i stared pred, but now i will feel anxiety during the day and end up waking up in the middle of the night and having an anxiety attack. Is anyone else having that? should i tell my doctor?

:please respond:


Thannks,
Little weggie (thanks marta for the nickname lol)

Sangye
03-08-2011, 03:24 PM
Holly, anger and anxiety (and also depression) are very normal with pred. It's also normal to suddenly start crying when happy or sad. I've had all of that and it does make your life really hard. I can't imagine being a teenager with it, though. You've got more hormones zipping around and fewer life experience tools to use to deal with it. I suggest you ask your doc about it. It's helped me a lot to go to a therapist also. I've been going weekly since I started treatment in 2006.

Palmyra
03-09-2011, 03:55 AM
freakyschoolgirl and Ginger,

I am very impressed with your maturity and ability to 'self reflect'. Anxiety and depression are my own personal bugaboo's, and I am not the one with Weg! I try, with some limited success to avoid depression, but it is a struggle at times. I really agree with Sangye that it simply gets worse if you don't deal with it, and that might involve adding an additional medication (Ugh!). But, if it may help avert a more serious depressive disorder, well worth investigating.

PS....love the nickname

Daggar
03-09-2011, 04:22 AM
Nasty?? That's pretty harsh .... trouble expressing yourself or what you're feeling.... yes.

We've got a "wake me up no matter what" policy that "Little Ginger Weggie" needs to implement..... I'm a very light sleeper and it doesn't bother me at all.

The therapist at the clinics we attend is always there as well -- don't be afraid to ask!!

Having said all that - considering that you're receiving 35mg/day of oral pred and being hit with an additional 1g of methylpred every month you're doing "amazingly" well!!!!

Thankfully, the oral dose is now coming down with each treatment ....

I questioned them about the large dosage at first but Holly's serum creatinine levels have dropped to the lowest since diagnosis (98) so I'm biting my tongue!!:flapper:

Only April-May-June to go....

freakyschizogirl
03-09-2011, 06:36 AM
So it is fairly "new" having to deal with all that comes with having WG at a "young" age -- and yes 25 is waaaaaay young!

Check with the hospital that you were diagnosed with because the family/medical counsellors they have to deal with long-term illnesses are amazing.


Thanks Daggar but i feel SOOOO OLD! lol. Think i have an old soul. I feel much better in the last week, but i see Addenbrooks on friday so i will be mentioning it to them.

Holly's beaten me to it now, being 15. Holly you deserve a pat on the back to be as grounded as you are, facing this so young. And your dad should expect the odd mood swing now and then, you are a teenager after all, teen years are the only real age you can get away with it, so embrace it. lol (Sorry Holly's dad!) And Holly you definately arnt a nasty person by nature.

Palmyra i always self reflect, i think way too much, its one of my worst traits and normally i end up over analysing things.

renidrag
03-09-2011, 08:49 AM
Daggar: I am in drug free remission except for COPD and have been since June 2010. I keep up with blood and urine samples bi-monthly now. I do still take anti-anxiety med. Diagnosed in 09 but suffered without knowing for at least two to three years. So yes drug free remission happens, but you still think every day if that little pain is a flare.
Dale

Sangye
03-09-2011, 09:19 AM
Daggar, I don't remember if I mentioned this before but a few months ago I was asking Dr Seo some questions about kids with Wegs. He said it's much harder to get Wegs under control in kids, and they have to use much higher doses of pred to do it. This should help settle your mind about Holly's high pred doses.

The 35mg is normal, but the additional monthly 1g (pulse steroids) is not. In adults, pulse steroids are only used for severe disease activity (eg, to stop lung hemorrhage). I can't imagine how hard it must be on Holly to get 1g a month on top of the 35 mg daily. I had pulse steroids for 3 days in a row when I began treatment. It's horrific! :sad:

Kudos to you, Holly for toughing it out. What an amazing kid you must be. :smile1:

Daggar
03-09-2011, 10:15 AM
Daggar: I am in drug free remission except for COPD and have been since June 2010


Hey Dale--It's nice to hear you're in "drug free remission".... coming up on a year now! Which drug cocktail did they use on you for initial treatment?

Daggar
03-09-2011, 10:17 AM
Kudos to you, Holly for toughing it out. What an amazing kid you must be. :smile1:

I try to tell her that every day...

Palmyra
03-09-2011, 01:17 PM
Yes, to the end of your message. I can sooo... relate. So here is to empowerment for both of us. Confidence and the ability to act. The worst that can happen is that we learn from a mistake. I don't think of our sensitivity as a negitive...just something we need to recognize before we act. It is much like someone that is quick to judgement, only in reverse. You are mature for your years....and just the same age as my daughter! My daughter was diagnosed with Crohn's at 14...(so much like Holly) and Weg at 20. You ladies have much on the go...very smart.

~cheers

drz
03-09-2011, 03:08 PM
We all know prednisone can cause mood swings and anxiety. Having a chronic disease that is unpredictable and always potentially dangerous and threatening also causes anxiety. We worry about our symptoms and our treatment which is natural. Learning to deal with all this is a great balancing act. Feelings of anger and impatience are likely. The key is learning how to manage our feelings and how to express them so we do not take them out on people who don't deserve them. Many of us here have a found a good therapist helpful in this regard. Sometimes some meds to reduce our anxiety or depress ion is also helpful. And posting a rant here or private message to another member are also good options. These are issues that are difficult for adults who have been or are professional care givers, so if you can handle it as teen with the extra burden of raging hormones and peer relationships, you are one remarkable young person we would all love to meet. thanks for being here and sharing!

stikker
03-10-2011, 10:08 AM
I just wrote this long rant about how miserable I am and decided that it was too negative to post. I am very depressed. I will be seeing my primary care dr tommorrow. I hope she has a magic pill. I think I will request that she refer me to counseling. I never tried it. Maybe it will help. It can't hurt.

Sangye
03-10-2011, 10:55 AM
Oh Stikker, please don't worry about being "negative"! It's most important to be honest about your feelings than to paste a fake smile on and pretend everything is fine. I also encourage you to see a psychiatrist before starting any meds for depression. There are too many complications, especially with our other treatments and pred usage. I think it's a great idea to start counseling. Hang in there and be kind to yourself. It can be hard to do that when you're depressed.

Geoff
03-10-2011, 10:51 PM
I agree totally with Sangye's posting. I count myself very fortunate to have a very understanding family, and on top of that I had the good fortune to meet up with a very good counsellor who addressed the depression/ anger and mood swings that had crept into my life. There are so many facets to this illness which we have to confront, which is another good reason for being on this forum and within our extended family. Good luck Stikker!!

Jack
03-11-2011, 02:36 AM
Never be afraid to post anything here, you'll only get good advice or sympathy in return. :)

We are probably all running a bit near to the edge. As an example, I was trying to wrap my daughter's birthday present yesterday - a heavy record player (she is currently into vinyl discs!), but I could not manage to do it due to my lack of strength and movement. My reaction was to break down in tears! Not my usual style and I was over it after a couple of minutes, but an indicator of my true mental state.

Sangye
03-11-2011, 03:12 AM
We are probably all running a bit near to the edge.
Boy howdy.

DEE
03-11-2011, 04:16 AM
Felt that way yesterday just because i could not open a tin of beans :w00t: DEEx
ps gave in ate the toast instead :thumbsup:

Jules
03-11-2011, 04:30 AM
I am soooooo glad I found this site!!! It is really comforting to know I'm not the only one who starts 'blubbing' over the craziest little thing - particularly as I have never been know to do so before! Have started by at work, a job which I love, but got all emotional the night before, doubting my ability to go back in and do the job as well as I did before . . . it was fine. . . but I realise this disease has secretly stolen a little of my confidence too! Strange, as I have always had the reputation of being the practical joker at work and always "so cheerful" to quote a parent.

renidrag
03-11-2011, 05:51 AM
Daggar: I was on the same juice as most everyone else, 80mgs pred, 200mgs cytoxin, 40mgs Bactrim and 40 Prilosec, along with Calcium and Vitamin 'D'. Started August 2009 and was off pred 2/12/10. Off cytoxin in April of '10 but did not handle Imuran well and went back on until totally off 6/30/2010. Only have COPD meds, Symbicort daily and emergency Albuterol, which I rarely use. Sticking with the Calcium and 'D' and also take Xanax as needed. Not too often, but if I go somewhere and don't have it with me I can panic easily. Had a DVT in 12/09 and subsequent Pulmonary Embolism so I am on Coumadin with a filter in my vena cava. And I actually feel OK. Still tired once in a while though.
Dale

freakyschizogirl
03-11-2011, 06:01 AM
Felt that way yesterday just because i could not open a tin of beans :w00t: DEEx
ps gave in ate the toast instead :thumbsup:

You crack me up Dee! And no chance of not opening tins in my house, since my mum's arthritis set in we get all thebest mobility aids. :thumbup:

Psyborg
03-11-2011, 06:17 AM
I actually felt a bit offended...the pharmacy gave me the easy open bottle for my MTX last time. My first thought was "Hey! I'm not an old person!". But heck it is easier to open LOL.

DEE
03-11-2011, 06:30 AM
You crack me up Dee! And no chance of not opening tins in my house, since my mum's arthritis set in we get all thebest mobility aids. :thumbup:

I have osteroarthritis too have no strength in hands , very rarely use tins but really wanted those beans :predrage:

freakyschizogirl
03-11-2011, 06:37 AM
My mum has Rheumatoid arthritis and has no strength i her hands either. There are some awesome mobility aids out there. We have one for opening bottles which comes in handy. The tin and jar openers we have are battery operated.

DEE
03-11-2011, 07:06 AM
Battery tin opener on shopping list this month :thumbsup::thumbsup:

Daggar
03-11-2011, 07:25 AM
My mum has Rheumatoid arthritis and has no strength i her hands either. There are some awesome mobility aids out there. We have one for opening bottles which comes in handy. The tin and jar openers we have are battery operated.

freaky... see ... the trials and tribulations of the "older generation" can sometimes be very beneficial!! :biggrin1:Would you of agreed when you were 15-16??:unsure:

Daggar
03-11-2011, 07:31 AM
[QUOTE=And I actually feel OK. Still tired once in a while though.
Dale[/QUOTE]

The tiredness is one thing Holly struggled with more at the beginning of treatment. She seems to have regained some of her energy in the past couple of months. I got tired just watching her...

How did the Imuran effect you?

freakyschizogirl
03-11-2011, 07:59 AM
freaky... see ... the trials and tribulations of the "older generation" can sometimes be very beneficial!! :biggrin1:Would you of agreed when you were 15-16??:unsure:

lol probably Daggar!
Its got to the point now when i cant use a normal tin opener! :ohmy:
My colleagues laugh at me cos i cant work it out! Its taken weeks but i'm so proud i can use a tin opener again!

pberggren1
03-11-2011, 10:42 AM
You have advanced from sandbox now Freaky!:biggrin1: