Hello all - another newbie here

So glad to have found this site, thank you!

My story in a nutshell - about 10 days ago I ended up in the ER with bruising, bleeding and a count of 1000. I was admitted for 3 days, given steroids and 2 immunoglobulin drips. My count went to 11, 41, than 90. They did alot of bloodwork (obviously) as well as a CT scan on my chest and abdomen. The Hematologist I saw in the hospital felt it may have been caused from the Bactrim (sulfa antibiotic) I had been taking for the previous 9 days. I was sent home with 60 mg prednisone daily and told to come see him in his office in 1 week (my appt. is tomorrow).

Since I've been home, I'm very slowly getting my energy back, and am battling all of the unpleasant effects of the steroids

I have many questions (lol- of course!) but my main one at the moment is: How likely is it, that this could be a one-time episode? ITP that is caused by outside factors such as a bad reaction to sulfa-drugs - is there lasting damage to my body? All of the reading I have done this week, I can't really find the answer to that. I know that time will tell, and I will probably know alot more tomorrow after meeting with the Doc, but what are the chances?

Thanks in advance from someone still reeling -

Hi Kim,
The only lasting damage ITP could cause is if you have a damaging bleed, or from the medications you take to treat it. If you don't have a damaging bleed, ITP doesn't cause lasting damage by itself.

I don't know the odds, but sure you could very well bounce right back and not see ITP any more. Probably lots of people get ITP reactions from drugs and never even know it. You are right only time will tell. If your counts are looking good you'll want to start a fast taper off the prednisone probably - follow your doctor's instructions carefully so your taper is safe. Good luck!
Erica

Hi Kimm - glad you found us!

You probably won't know a lot more after you see the doctor. He won't know either - there are no concrete answers with ITP, only speculations. Some drugs can cause a cascade of events that trigger a permanent change with anti-platelet antibody production. Sometimes it is temporary, but you may not know that for a long time. This doesn't mean you will have to treat forever on an on-going basis because remissions do occur.

Prednisone can be tough, put your seat belt on and try not to fear the ride! It isn't pleasant and might get worse before it gets better. Advice - avoid salt and sugar as much as you can and stay as active as you can. That will help in the long run.

We're here to answer any and all questions to the best of our ability. It's a tight-knit group, but we do have our little spats sometimes.

Hi Kim
Your story is very much the same as mine except for the Bactrim. I was on no drugs at the time, but like you major bleeding, IVIG, and pred and 6 days in hospital having blood transfusions, platelets, iron infusions, plasma transfusions.

I left the hospital with a count of 20 and 10 months of prednisone, that all finished in November, here it is June and my counts are GOOD.

ITP takes a lot of waiting and blood testing, try to stay positive. Steroids are not easy on your body or mind so prepare yourself for a bit of a battle but they have worked for me and as much as I hated taking them, they did work.

Good luck at your appointment today, let us know how you go.

Thanks everyone It's a frightening time for sure, full of unknowns. So comforting to know that you are all here.
I'm trying to educate myself as much as possible, without overwhelming myself as well.
I'm preparing myself for the "wait" because I'm beginning to understand this journey is probably not going to be over as quickly as it came on.

I think I will have a whole bunch of new questions for you all tomorrow after my appt.....something tells me they will have alot to do with the "dreaded prednisone"
(We're not getting along too well at the moment :evil: )

Thanks again everyone - you are doing wonderful things here

I had my first follow-up with the hematologist today since I was released from the hospital 1 week ago. My count was 600 and I can start my taper off prednisone tomorrow, from 60 down to 40mg. I go back in one week for step 2.
(I've only been on prednisone for 12 days (60 mg), does this sound like a normal taper?)

I was also a bit surprised when I complained of the crushing fatigue and achey hips and his response was "ah, the steroids".......

My last question - the "Moon Face"......what can I expect now that I have it? (funny, I had NO idea what that even was until I woke up and looked in the mirror a few days ago - ugh!!!) How and why does it happen, and how and when does it go away? Does it go away?

p.s. - I'm still learning my way around this site, and I tried searching but didnt come up with much, so I'm sorry if this has been answered many times before. Also, maybe I should have started a new thread?

You are VERY sensitive to steroids obviously. To have such a high count so soon and the moon face so quickly too is amazing. You can do a fast taper like that to start with but as you get to the lower doses they will have you go a bit slower.

The moon face, some water retention and some fat usually goes quite quickly. I found it went when I got down to 5mg a day.

I am quite sensitive to steroids too although never getting a count of 600, but I have found that I only need 15mg for a good response so when I needed it again I negotiated the lower dose and never took higher than 15mg again. You may want to remember that just in case you need it again.

Hi Kimm, thats an amazing response to steroids, I was on them for nearly a year, including taper. I started at 75mg and the highest my counts got while I was on them was 130 to 140.

The moon face with me went when I got down to 5mg a day, the taper of the steroids is hard on your body and you will get aches and pains when you dose is dropped, I got it for three or four days every time the dose was lowered, also my counts always dropped when the dose was reduced for the first week but they usually came back up the second week(I could only reduce by 5mg fortnightly or monthly or the counts dropped to much).

I wish you good luck in your ITP journey and feel free to ask heaps of questions, always someone around to help.

Thanks Ann, I will definitely try to negotiate a lower dose in the future if necessary.
There is no telling how long it would have taken me to figure that one out, I appreciate that.

Milly, thanks for reminding me about the taper. Here I was thinking it would be a breeze because I haven't been on it very long, but I can see now as sensitive as i seem to be, I might have a bit of a tough time. At least I can prepare myself mentally.

I had 2 IVig treatments in the hospital (10 days ago, so I'm thinking my count could be so high because of that too maybe?) The doctor said the IVig wears off in about a month? It's crazy, as much as I like my doctor, I'm not real crazy about his "laid-back" attitude. In fact, I've learned more from all of you than I think I ever will from him. Crazy isn't it?

I'm still at the point where I'm asking myself "Why? What happened? What caused it?"
I know I'll get past that at some point, but I'm just not there yet. So, I will continue on to Step 2, and go take my "poison" now....:woohoo:

Thanks for being there

Kimm:

That is awfully fast to have developed a moon face. It occurs because of fat redistribution in the face - it may get worse. It will slowly go away as you taper. Prednisone can also cause fat to redistribute in your lower middle section...that is harder to get rid of.

I am usually never in favor of too fast of a taper, it can cause counts to tank. You haven't been on it very long to experience too much withdrawal, but everyone is different and that could happen.

IVIG does not necessarily last a month. For some, it is a few days or a week or two.

Having a doctor that is laid back can be a blessing in disguise. My hemo was like that too, and after hearing stories of how some doctors panic and over-react, I was happy that mine was calm. It enabled me to go about life normally without too much disruption.

Maybe I don't really understand what a "moon face" is? My face has gotten this round bubble-like appearance, but it seems to be all below the eyes. My neck looks fatter also.
I'm not gaining any weight on the scale, and that kinda concerns me, because that tells me its not water.

Thanks Sandi for pointing out the plus-side to a laid-back doctor. Thats absolutely true, I'd be a much bigger mess right now if he was making this into a big deal. Me on steroids with a doctor panicking......not a good combo..yikes, hate to even think about it.

Hi Kimm, moon face is that, you sorta look like a chipmunk well I did anyway. Don't worry about it too much it will go!

My doctor is pretty laid back also but he is calming. I did used to get pretty frustrated with him but I think that was more roid rage, everyone frustrated me while I was on steroids. I am a pretty calm person usually but prednisone turned me into a monster.

It is good that your not gaining weight so be happy about that I think I gained about 5lbs and still have it, but I am fifty and lead a pretty sedate life.

I know it is hard but I think if you can keep your sense of humour between the bouts of depression you will get through this. I had some really funny(now I can see the funny side)experiences and did some strange things while on prednisone. Try peeling hard boiled eggs in the middle of a roid rage, all I will say is there wasn't much egg left.

My poor family went through hell with me but they are still here and it sure makes you aware of your true friends.

Kimm - that sounds like a moon face to me! It's good that you're not gaining weight. Don't be at all concerned about that.

Milly - I can't even peel eggs when I'm not on Prednisone. I usually get so frustrated that my husband takes over. I also have some very funny stories. I didn't learn to laugh at myself though until my second round of steroids.

Hi Kimm,
Welcome to our forum, & hang in there.
Milly - you make me laugh, thank you
As for hard boiled eggs - I have found sliding a wet teaspoon under the shell works well.
Cheers,
mj

Peel eggs in water and the shell comes off easily. I learnt that from a cooking programme a couple of weeks ago.

Welcome Kimm,
I gained 10 pounds on pred. I took to wearing long scarves wound around my neck because it was winter. One good thing was all the nice compliments I got once I was totally off steroids about how good I looked. Hang in there. This too shall pass and with your counts so high, the prednisone seems to have done its work.

You ladies are a hoot! :laugh: I've never heard the term "roid rage" before. Very funny stuff!

Hi everyone- I need some more help please ?!

I'm starting Day 5 of the pred. taper, and doing pretty well, not great, but hanging in there. But, now I have a whole new concern. I've come down with this cough/congestion/sore throat type stuff that I was being treated for with antibiotics 3 weeks ago when all of this started. It's back. The very same thing. (I'm coughing up alot of green phlegm and that concerns me).

My question is: Should I call the doctor, and if so, which one? My family doctor doesn't even know anything yet about the ITP, and I have an appt day after tomorrow (Thurs) with my Hema. I hate to wait, because it seems like its hitting me fast and hard.
What the heck is going on here? I should be getting better not worse!!!! :sick:

Call the family Doctor, you should get it checked and he can call the Hema if need be. You will probably just sit around worrying if you don't.

Thanks Milly, I just made an appt. with him for tomorrow.
I've never had to juggle doctors before, this is all new to me. So frustrating, and so depressing.

Hi Kimm and welcome to the board,
I think you'll find with some ITP cases (including myself), you seem to get more run down than your useal self. I've had two bouts of ITP crashes (July 2006 & July 2010), and the first time I also did the prednisone taper. As you're coming off the prednisone, you do start to feel all the aches and pain--plus fatigue. And, I, too, was getting sick more often. Are you resting enough? I also had the weight distribution (did't gain any weight--but had more weight around my waist and upper body). When you feel better, you can do so type of exercise, and this will help with firming the wait.

Thanks DeeDee. I saw my family doc today, and he is onboard now. Didn't prescribe me antibiotics (which I was happy about). He wants me to tough it out a few days more and see if I can kick this crud on my own.....oh how I hope I can.

I'm on Day 6 of pred. taper and I'm noticing some kind of pattern. I wake up feeling really awful in the morning, no energy, can't wake up, and barely want to move. As the day goes on though, I seem to start getting more energy and at times I almost feel normal (not really, but as close to normal as I've been in awhile). Could this have anything to do with me taking my prednisone in the mornings? I wouldn't think so, and in all honesty, I really kinda hope not. I would hate to think its the Prednisone that is actually giving me energy, and without it I feel totally wiped-out and downright sick. Am I making sense?

Prednisone does give most people energy. When you don't have it, your adrenals suffer and it can make you feel tired.

Hey Kimm I am glad you are ok, good you got it checked though. I always found on pred that I woke up ok took the meds and then after about an hour the fog would come in. My mind slowed down, really just felt slow and couldn't make a decision about anything, cried a lot and then as the day went on I would get lots of energy and felt like the rest of the world was in slow motion. I stopped driving for a while because I had no patients with anyone ( hence the term roid rage). This was only when I was on a high dose.

It is most likely the pred giving you energy, but you will eventually get your own energy levels back when you are off it.

How are you sleeping, I only slept for about three hours when I was on it.

I had those Decadron pulses last October and I still don't feel like my old self. I'm just learning to live with it and happy that I'm not in the hospital at the present. I just think the steriods did something to my glands like Sandy mentioned. When I would take the Decadron, I would have a lot of energy; then, after I stopped taking it, I wouldn't be able to get out of bed the first day. Each day would get a little better--but I did have to push myself.

Visit with the Hemo today. Count is at 389, down from 600 last week. Starting tomorrow I will drop to 20 mg pred (down from 40 this week). He said if my count is still looking good next week he wants to completely stop it at that point.

I'm not sure how I feel about that, I was expecting for him to taper me to 10, and then 5mg, or something along those lines, just from everything I've read on this board.
Any thoughts? Because I've been on it for such a short length of time (it will be 3-1/2 wks next week) might I be able to tolerate it easier? Is that his reasoning?
(Normally I'm right on the ball and would have asked him then and there, but my brain lately works in slow-mo these days. I walk in his office every week with a list of questions from the week before :ohmy: )

Milly - SLEEP you ask??? I LOVE my sleep. I am the Queen of Naps. However, lately those days are gone. I get about 4 hours a night of really good sleep since I started the pred, and NAPS????? HA, forget it. I finally have a good solid excuse to take lots and lots of naps, but nope, what a bummer.

I'd hazard a guess that your doctor isn't thinking about what's tolerable for you. Most doctors have no understanding of what taking steroids is like. His thinking is that if you're on steroids for a short time you don't need to taper because the body has not yet become dependent on it. That's certainly true after two weeks. Whether it's true after 3-1/2 weeks I'm not sure. I imagine he's although thinking that as you've had such a good response to the steroids that coming off it quickly won't see your counts crash. Only time will tell if he's right.

Good luck. Let us know how it goes.

Is someone's count more apt to crash with a fast taper?

It's hard to say if the crash is because of the level of pred or the speed of the taper. It might also vary by person. I didn't notice any differences with the speed of the taper in terms of counts.
Erica

Kimm, it's hard to say how each person handles the prednisone taper. Five years ago when I had my first bout of ITP, I had read on the ITP board that you should always taper very slow. So, when I was released from the hospital and put on Prednisone, I talked to my doctor about doing my taper very slow. I tapered off Prednisone over 3 1/2 months and did it at a very slow rate. I was actually cutting my last pills in half.

Now, with my second bout of ITP (last July), I was put on Decadron pulses. I would take Decadron for 4 days straight and then stop it completely on the 5th day. Then two weeks later I would start another pulse. I did this 4 times and finished my last pulse last October. So, in this instance, I did no type of taper and it seemed to work. But, I'll have to say on the 5th day, I could hardly get out of bed. I really had to push myself.

kimm wrote: Is someone's count more apt to crash with a fast taper?

Whether it's true or not, it's what a lot of doctors believe. Mine told me that the idea was to take steroids until a normal count was reached, and then slowly withdraw the steroids to give every chance of the count staying up. So I did a taper over three months and had normal counts for 6 weeks afterwards and then woke up one day with a count of 1. So it kind of worked for a while.