Diagnosed with ITP Last Week

Steve prednisone will make you feel terrible- it is stress in a bottle and you are on a very high dose. I hope you doctor can get you off of it soon as possible and onto something else. I understand that he doesn't want you to crash again.

Fiona, are you still at 2K? and 90mg of pred.?! I would be upset too! I wouldn't have to demand to see my hematologist- he would want to see me and get me on some other treatment. Maybe your counts have come up some? I guess the doctor's thinking is that your numbers might still shoot up after 3 wks if you stay on the 90mg? I've never had that happen. In my experience prednisone works right away. Its frustrating but sometimes treatments just quit working. Your immune system is very smart and can figure out how to get around these drugs.

The thing about prednisone is that the side effects get worse the longer you are on it. Now I'm on only 4mg, but I've been on pred for over a year. If I bumped it up to 10mg I would feel terrible with high blood pressure, anxiety, acid reflux, weight gain- probably worse symptoms than you are having!

There are other options Rituxin, Nplate, Promacta-- problem is they are expensive. good luck

Hi Poseymint, no I am not thankfully at 2, I left hospital on a count of 15 and then went to 127 and now at 121, its been 3 weeks now on Pred, 90mg, last time was a lot easier,counts went a lot higher - oh well - but I guess I wait awhile and see what happens next...

Protocol says (or at least used to say) to stay to on high dose pred until the count is in the normal range, or for at least 6 weeks if it never gets there. I also used to say that if the first lot didn't work then to double the dose. I have not heard of many doctors doing that.

Interesting to hear the protocol Ann. When I was diagnosed I was put on 60mg and two weeks later we started to taper. I did have higher counts but that was due to Ivig - I'd had it three times by the time we started the taper. When I had a count of 1 the 60mg pred got me up to a whopping 8 before I dropped again

Fiona - I'm not on steroids currently but when I was kept on them for a period it was between 15-20mg a day (after taper down from 60mg over about a three month period if I recall rightly).

Steve - you will get to that holiday! It just takes a little time. I've played tennis before & wouldn't avoid it with counts at around 100. In fact - there's nothing I would avoid with counts like that. I've recently started running and when I had a count of 23 was told I was fine to keep it up - just had to make sure someone knew my route and knew when to start missing me (although that was a worry in itself! I had visions of getting lost, or stopping to chat with someone, only to have hubby in a panic lol!). Worst case scenario I can think of is being hit by a ball or falling over and twisting an ankle. The way I see it - you could fall and twist an ankle on an uneven surface when walking and you can't avoid that! As for the ball - with counts over 50 I'd expect a bruise but not much more. Under 50 and certainly closer to 30 I might be more cautious and only play a "friendly" match. I'd still play though. The confidence to make choices about what to do does come and you will find your comfort zone. Haematologist's do tend to err on the side of caution. Hope you do manage a couple of nights away and avoid the headaches long enough to enjoy yourselves

Eta - Steve I was remembering your other count when I wrote this. Maybe stick to a friendly match - the stress relief might do you good if you decide you can play

Joerg wrote: I work from home too. If I can not sleep because of the steroids I work some hours in the very early morning. I usually wake up around 4 when on Predni. These are usually also the hours with the clearest mind. So I either enjoy them or work on stuff that is difficult. Maybe that is possible for you too

4am must be the Pred switch on time as I'm finding that pretty consistent regardless of when I manage to get to sleep. For the last two days I've been very tired and slept longer,, today I've been up since 3:58am so as you say, I just use the time to get on with stuff now.

FionaJ wrote: Do you go everyweek for a blood test.... well lets hope next week is a better one!

At the moment we're doing weekly on a Monday. I then get a call from the clinic nurse later that day to advise on the count and consultant's opinion. Still early days for me really so we're hoping I perhaps level off.

@Katsim - Thanks. I think I'll take that advise and my wife and I will have a gentle rally at some point soon when my energy levels allow. Looking back, I took a serve to the back of my head from my partner not long before my diagnosis and survived that. No idea if I was on low counts at that stage as I don't think my bruising had started.

It's our anniversary today and we're off to London in a short while. Booked to see a West End show later. We had a great day yesterday visiting a local gardens and later the seafront with a couple of hours sleep in between. So we're making the most of it and having fun.

As the days go on I'm feeling more normal about things and getting used to the concept of having ITP. It's not great but I'm determined to get on with things and ignore it as much as possible. It will likely change on Monday when I await the next count but since Tuesday things have felt quite normal. I started back at work on a gentle return which helped me get into a more regular routine. I felt pretty tired most days due to the sleeping pattern but headaches have stopped for now. I have a new Pred side effect of acne to enjoy but it's not the end of the world!

Thanks for all the replies and info here though. It really does help to have somewhere to ask questions and here from others who share the experience.

Good to hear Steve, that you are coping better!!

Regarding the Acne - I shop what kids at age of 14 or 15 shop. Some skin soap and other treatments.
It helps and you feel real young again

Enjoy your trip.

Cheers
Joerg

Which show are you seeing Steve? We had a family birthday outing last week and saw Billy Elliot. With a meal afterwards it was a good day.

Glad you're getting a handle on ITP. Once you get to grips with it, you realise that even when counts are low it generally isn't so bad.

Excellent news! Glad to hear you're enjoying your wedding anniversary!!

A little update from me after the last couple of weeks. Last week's count was 83 and this week I'm at 107, so feeling a little happier about that. My consultant agreed to taper some of the Pred. Last week I went down to 50mg and after the count yesterday we're taking it down a little more to 40mg starting from today.

I'm hoping that helps with the sleeping pattern and other side effects I've had on and off. Generally though I'm feeling pretty well. I do hit points where my energy levels just seem to crash and I have to take a break but otherwise not too bad.

We're keeping the tests weekly for now to monitor my counts and will take it from there.

Ann wrote: Which show are you seeing Steve? We had a family birthday outing last week and saw Billy Elliot. With a meal afterwards it was a good day.

We saw the Lion King. We first saw it many years ago so it seemed appropriate to head back after 9 years and see it again. It was a very good day.