Return to work

I was admitted to hospital after my Doctor referred me to ER. Platelet count was 5,000 had IVIG and Prednisone 100mg as was discharged 3 days later. With platelet count of 41,000
4 days later I got a massive bruise on my arm and ER with a count of 10,000 and spent a week in hospital and left with a count of 76,000.
I have been off work now really 3 weeks, But have no energy, fog brain and a bit spaced to be honest.
I am trying figure out when I can get back to work. I know I have just been through the mill and things can take time.
I work as a director of business development for a large multinational company, Brian Power and building relationships with energy are key.
Would love to know your thoughts or experiences.

Well....my experience was a bit different. I was never admitted to the hospital, so kept working even with counts under 5k. My doctor kept telling me to go to work so I did. It didn't occur to me to take time off because I wasn't really sick (contagious). I also had a fast-paced, stressful job and if I took time off, someone else had to do my job on top of their own and I didn't want to do that to anyone.

Are you still on steroids? If so, that will cause brain fog as well as many other side effects. Most people are on steroids for months and the side effects can get worse as you taper. It can be difficult to work through it, but it can be done. It's either that or take a long leave of absence. ITP can be a chronic thing and there can be a lot to deal with. That's not to say that you won't achieve remission, many do, but sometimes it's best to keep life as normal as possible. It can take time to find a treatment that works for you and has few side effects. Prednisone is the worst. IVIG is usually temporary so is not an ideal long-term treatment. It would be a good idea to research the other options so you can make an informed choice when discussing treatments with your doctor.

Thanks Sandi for sharing it really helps. Can't believe how low my energy is back into get bloods done tomorrow morning so will see if they are still up. But given the energy levels and foggness in the head wouldn't be myself back at work for at least another week. Hoping this passes as I have only been sick 4 Days in 21 years at the company. Body certainly feels under attack. It's like having Flu.

Also currently on 100mg Prednisone. Maybe this is the root of all evil.

Yeah, Prednisone will do that and it will not get better until you are off of the drug for a few weeks or months. Like I said, it can get even worse when the taper starts, especially if you are on it for a while. If the 100 mg's is not keeping counts up, I'd talk to your doctor about starting the taper. The longer you are on it, the slower you have to taper and that causes the withdrawal to go on for a long time. You really have to be your own advocate with ITP so it's best to learn as much as you can.

Working while on steroids can be a challenge. I had a horrible time just trying to have a phone conversation with clients and I was very hard on myself. I stuttered and couldn't remember words. I was horrified at the time but years later, all of the stories actually became funny. My co-workers knew what was going on so if I got stuck, they helped when they could. The trick is to not take yourself too seriously and know that it's the drug that is causing the problem.

Thanks Sandi great to hear your experience. I'd expect some clangers from me. I at least can laugh at myself. Thanks again for your thoughts they help so much

One thing I remember doing is talking to a woman on the phone named Stacey. My mind was racing and I kept calling her "Spacey". My co-worker heard me and help up a card that had her name on it. I actually had to keep reading it to say it right. I did so many things like that! It's frustrating to not have your mind at full capacity, but the best part is that it's temporary. My second round of Prednisone went better than the first because I realized that.

I understand entirely where you are coming from. When I was first diagnosed I had a brilliant attendance record as a front line nurse on a high dependency unit. A stressful job demanding 100% attention span. I was on high dose Pred & couldn't function sufficiently enough to work. The pred was working as far as my platelet count was concerned but I couldn't cope with the side effects and tapered whilst trying other meds. Azathioprine came next, the side effects of that were awful too so I was swapped to mycophenolate but that didn't work. Pred tapering was too fast the first time I tried which had awful effects.
I was off work for 9 months all due to medication side effects.
Staying on high dose Pred really isn't an long term option. Maybe you could ask to try Promacta, effective for me with no dose effects.

Just wondering what side effects to expect when they start the tappering. 100mg prednisone to zero seems it might take a number of weeks.

I think I am getting used to the high dose. I Get a daily sweats hour., sleep is messed up and mood can get angry. I also went into work today and did half day of work but had to crash out fir the afternoon. At least I know I am not up for it yet.

Thanks to everyone for sharing their experiences.

Some people experience fatigue, muscle weakness, joint pain, depression, etc while tapering. It can all get worse every time the dose is lowered. Sometimes the taper is worse than the high doses and it can take a few weeks or months to feel normal after the drug is stopped.

Tapering from 100 mg's should take a few months, not weeks. Tapering in a few weeks will cause the withdrawal symptoms to be worse than a slower taper and can actually be dangerous. I wish I had better news for you. It is a miserable thing to go through....been there a few times!

Thanks great to know the timeline and what to expect. The prednisone has certainly taken its toll. Something more to look what for when the Tappering starts which I think will be next week all things going well.

Hi,
This is what I did and may work for you.
Immediately get approved for NPlate or Promacta.
For me NPlate worked and I currently take NPlate only below 40. One vial 250 mcg lasts me for 4 weeks.
I Tapered prednisone 50% every week, mine I was on 80mg per day. So I tapered to 80, 40, 20, 10, zero. So I was out of prednisone in 4 weeks.
With Nplate I am back to 99% normal. I take off work 30 minutes early once a month and get tested.