Newly Diagnosed with ITP

Hi,

My name is Kristina, I'm 21, and I've had no previous medical issues/family history of blood disorders, and I just found this forum because I just got diagnosed with ITP and I just got discharged from the hospital last night.

My story is pretty brief, thus far, but nonetheless, I would like to share it. On 8/8/2013 I woke up with what I thought was a rash on my chest. It looked like scratch marks, so I thought that maybe I had scratched myself in my sleep. Later on, I had noticed similar purple dots clustered on my arms and my back as well. I thought I was having an allergic reaction, so I took some benadryl. I had a bad headache that was lasting for around 3 days at this point. I was taking some ibuprofen to help, and I had taken more than the recommended dosage a couple of times, but the headache wasn't going away, and it got worse whenever I moved my head. It was really strange. I had taken a nap, woken up, and the insides of my cheeks felt strange. I looked in the mirror and saw a whole lot of hematomas. I immediately got scared.

I decided to go to urgent care. They immediately realized that this was petechiae. At this point, I was starting to bruise everywhere as well, they sent me away with prednisone and instructions to come back to get my blood drawn the next day. I started prednisone at 7:00 pm that night and had difficulty sleeping. They started me on 50 mg, tapering every 2 days (so 50, 50, 40, 40, 30, 30, etc...) for 10 days.

On 8/8/2013 I went back to that urgent care place to get my blood drawn, but they realized they didn't have the right needles, so they referred me elsewhere. I just had to wait until that Monday, so I did. The petechiae and the bruising got a lot worse over the weekend, but I also realized that it wasn't like the prednisone would work overnight.

I got my blood drawn on 8/12/13. I was told I'd have my results in 2-3 days. Still, the bruising and petechiae was bad, but I didn't have other side effects. I was still going to work everyday, and I felt fine. My skin just looked terrible.

On 8/13/13, I got my blood test results back. Everything was fine aside from my platelets. My platelet count was 6. They told me to immediately go to the E.R., and I did. It was really scary.

At the E.R., I was immediately seen. They took even more blood from me, and my platelet count was 2. I got a ct scan to see if my brain was bleeding, and it wasn't.

I was admitted into the hospital on 8/13/13, and they immediately gave me a platelet transfusion and a session of IVIG (gamma globulin), as well as starting me on solumedrol.

After this, they took my blood, and my platelet levels were at 13 that night.

The next morning 8/14/13, they followed up, and took my blood again, but my platelet levels had dropped to 8. I was pretty frustrated at this point. I had an ultrasound done of my spleen, liver, gallbladder, and other organs also on 8/14. Everything turned out normal. They gave me another session of IVIGs, 3 more sessions of solumedrol, and another platelet transfusion.

They waited until 8/15/13 to take my blood again, but when they did, my platelet count had risen to 50. I got another session of IVIGs, 2 more solumedrol sessions, and then they released me.

I currently have to get a CBC (complete blood count) every Monday, and I'll be following up with my hematologist in 2 weeks. He still wants to(/ or did but didn't tell me) check for h. pylori in my blood, and he also wants to do a bone marrow test. My hematologist, his two PA's, and the other doctor that was looking over me all think that this is an acute episode, and I'll never have to deal with this again, but everything I've read about ITP in adults states that it's not acute, and that is pretty scary.

Currently, they put me on a 6 week course of prednisone starting off at 60 mgs, tapering down 10 mgs every week, and I was also prescribed pepcid to counteract some effects of the prednisone. Like I said, I have to get a CBC every Monday, and I'll be following up with my hematologist.

Nonetheless, this is really scary for me. I've never had medical issues before, I've never been hospitalized, or been in the E.R. for myself. I absolutely hate looking at myself in the mirror because all I see is petechiae and bruises. The petechiae is going away (luckily), but the bruises are going to take a lot longer to go away. I start my second year in my MA Psychology program in a week, and I am scared that my count is going to go down and I'll end up hospitalized and be behind on my studies and my thesis.

Any insight, comments, concerns, etc... would be greatly appreciated. I'm kind of a mess right now.

Hi there,

It's late, so I'll keep this short. There's lots of good information on this site, so read, read, read.

Also, don't take ibuprofen....if you have a headache, Tylenol is preferred. Ibuprofen and aspirin don't drop your platelet count, but they make the platelets that you have work less effectively....so will cause more bruising and/or bleeding.

I'm sure others will chime in soon....there are typically several people on prednisone who pop in late at night when they can't sleep.

I am definitely only taking Tylenol from now on as per the suggestion of my doctors. Thanks so much for the quick response.

Hello. You're right, ITP can be acute or chronic, and most of the time it is chronic. However, chronic does not mean that you will have it for life. Chronic just means that it lasts longer than a year. Many people go into remission. I struggled with ITP for 8 years, but then have had a 7 year remission. It may come back, it may not. Either way, I'll be fine.

ITP is usually manageable. That means that you can treat it and have periods of time where counts are normal. If not normal, then they may at least be safe (anything over 30k). Most people continue to have normal lives with ITP. It will be as normal as you make it. I won't say it's always easy, but it can be done. Some doctors do not hospitalize patients with low counts. Many of us have continued to work with counts under 5. That is up to you and your doctor.

ITP has come a long way in the past 15 years, and there are more treatment options than there ever were. You have a lot of choices ahead of you if need be. You'll be fine!

Kristina, it is possible your headaches were being caused by the ibuprofen. There is a phenomenon called Nonsteroidal Antiinflammatory Drug-induced Aseptic Meningitis. It is in the literature (for example, www.hcplive.com/publications/resident-and-staff/2005/2005-12/2005-12_04 ) I am familiar with it because I observed that my own headaches that would not go away in spite of excessive doses of ibubuprofen were qualitatively similar to my wife's IVIG induced aseptic meningitis. The headaches finally quit when I stopped taking ibuprofen. The mechanism for NSAID-induced aseptic meningitis is unknown, and could be immunological.

There is disagreement whether NSAIDs can cause drug induced thrombocytopenia as well (if thrombocytopenia is drug-induced, it is not called ITP, even though the immune system could possibly be involved) www.ncbi.nlm.nih.gov/pmc/articles/PMC1993236/

It is within the realm of possibility that both your persistent headaches AND your thrombocytopenia were caused by taking excessive amounts of ibuprofen. Wouldn't that be nice? We can hope for this, but you certainly can't count on it. If I were in your shoes I would never again take ibuprofen, and I would be cautious with other NSAIDS as there seems to be sometimes some cross-sensitivity.

Hope for the best, but prepare for the worst... and that includes reading everything you can find, especially on this site.

Thank you everyone for all of the advice. I saw my hematologist today, and my counts have been consistently in the 200k-250k range since I got out of the hospital. I've tapered my prednisone doses from 60mg a day to 40mg a day. My platet count today was 243k. Since my counts have been consistent, I don't need to get my blood drawn every Monday anymore! I'm so happy about that. I'll be continuing to taper my prednisone dosing 10mg a week until october 1st when I see my hematologist again... then *fingers crossed* I can get off of this prednisone. I gained 4 pounds on it, and it's giving me acne on my back and neck.

Thanks everyone for the support. I'll be sure to update again in October.

My husband was recently diagnosed with ITP. This is the most frustrating disease I have ever encountered. We have done two different steroids and we are now on our third. He is taking Prednisone 10mg 5 tablets a day. This is a reduced amount because he was taking 5 tablets twice a day not to mention the Ritumimab we are receiving once a week for the past 4 weeks. We have his blood drawn nearly twice a week and the numbers just keep getting lower and lower (2,000). No one wants to do much besides say take it easy and go to the emergency room if you experience any spontaneous bleeding or notice any unusual behavior. Is this normal? Should we be doing more? Like you he was a totally healthy active man with no obvious health problems. We started noticing some bruising and red spots that werent going away. He has has regular blood draws, ultra sound that was all clear. There is nothing wrong with him except blood problem that wont go away. Im tired, he's hurting and miserable for alot of different reasons.

teashav
I can understand where you and everyone is coming from. My fist doctor thought my ITP was induced by a medication. It is now 1 1/2 years for me and still can't get stable. Yes the doctors will tell you to just be careful and go to ER if you start to bleed (gums/nose/females the unexpected bleeds. I work full time and yes I am always tired and sore, with the last medication I had to call into work once every two weeks. I like my work and hate calling in, we are not a big place so it really does effect the one I work with. Then some of the other medications had no side effect but didn't work at all.

Teashav:

There isn't much that anyone can do but try different treatments and hope that something eventually works. That can take some time and patience, but most people do find a treatment that will raise counts. The treatments can be worse than the disorder itself, but if you try to just go on with life and keep things as normal as possible, you get through it one day at a time.

Hi again everyone,

I just got back from seeing my hematologist. In the time from my last update (end of August) to now I've tapered down to 10 mg prednisone successfully.

So today has been the day I've been waiting for... *drum roll* I finally get to stop taking prednisone! My platelet count was 237k, so still normal. As of tomorrow, I will no longer be taking prednisone. It's kind of weird because I read that most people taper down to either 7.5, 5, and or 2.5 mgs of prednisone before completely stopping it, so I thought it was odd that I'm going to be going from 10 to nothing. Is that strange, or did anyone else go from 10 mgs of prednisone to no longer taking it?

Otherwise, I have been good. I kind of fell off of my bike a few days ago (I really should have checked the tire pressure), so I've been pretty bruised from that in certain places, but they actually look like normal bruises and not the ones I got when my platelet count was 2. It's kind of refreshing, if that makes any sense.

I'm anxious about coming off of the prednisone, but I'm also glad that at least temporarily, that I will be off of the prednisone. I gained probably 7 pounds on the drug, and it caused me to have terrible acne on my face, shoulders, and back. When I was on high doses of it, I had really bad joint pain as well.

Farewell prednisone, you will not be missed.

I know the chances of me having a long remission from prednisone are slim to none, but at least I will be off of it for a while.

-Kristina

Kristina:

Ideally, the taper should at least go from 10 mg's to at least 5 mg's before stopping Prednisone for two reasons. One reason is to avoid a platelet crash and the other reason is to lessen the taper withdrawal symptoms. A lot of doctors don't fully realize how bad withdrawal can be. However, some people have no problems going from 10 mg's to nothing, especially if they have not been on Prednisone for a long time. Also, it seems as though the first time on Prednisone isn't quite as bad as subsequent rounds.

Keep hoping - you could end up with a good remission. Some people actually do get lucky!

I was thinking the exact same thing Sandi, so I didn't listen to my hematologist's advice. I took 5mg today (cut a 10mg pill in half), and I'll probably continue doing 5mg for a few days before stopping all together. I don't want my body to freak out and experience a crash because I tapered from 10 to 0 with nothing in between.

Thanks! Statistically, I doubt I will be one of the lucky ones, but hopefully my count will stabilize somewhere considered to be safer then where I was prior.

-Kristina

When I tapered off prednisone, I went from 10mg, 5mg, 2.5mg and done. Good choice in deciding to go with the slow taper. Good Luck!!

After I last updated, I decided to do 4 days of 5mg prednisone and then I stopped.

I had my 6 week follow up today, and my platelet count was 252! I was really surprised considering I've been having some petechiae on upper arms and elbow creases, but I suppose it's from me scratching too hard after wearing a new sweater. I told my hema's PA, who did not seem concerned.

I'm really surprised that I'm still sustaining counts this high, since most people do not after stopping predisone, but I will take it!

Consequently my MCHC was slightly low, like it was the last time I got my blood drawn. I guess that means I need to eat more iron rich foods.

I finally took a good look at my records for the 6 weeks that I was on prednisone and all I have to say is wow. My WBC count was always above 11 and it got around as high as 16, and my neutrophils were always around 88% with my ANC at around 10,000 or higher. I thought counts for those things only got so high when your body was fighting an infection. I did not think prednisone could do that.

Regardless, I am glad that I get to remain off of the prednisone for the time being. I follow up in 6 weeks again.

The white count, and particularly neutrophil count, always goes up while on steroids. It's called demargination and is where white cells that usually hide out in the endothelium of blood vessels come into play and get counted.

www.pharmacologyweekly.com/custom/archived-content/pharmacotherapy/79

Yet another update!

I went in to get my blood drawn on 12/23, and my platelets are still at normal levels at 233. They dropped from 252 to 233, but I was always around 233 or so when I was on prednisone, and now that I've been off of it for 3 months, it's good that I'm still maintaining those levels.

I spoke to my hematologist about the possibility of my itp in August being an acute episode, and I was told that it was too soon to tell. I get to go back in February to get my blood drawn again. He also said that while it is uncommon to see a durable response with prednisone, he has seen it in a bit of his patients with ITP, so I am not alone in that.

It is too soon to tell whether or not you had an acute case of ITP, but it sure looks good at this point! Even if counts do drop again, you'll be fine since you respond well to treatments. Great news!

Another option to look at is you may not have ITP you may have medication induced thrombocytopenia. Basically like a reaction to the drug instead of showing signs of allergy your body lost plateletes!




If this is the case than you shouldn't have a drop again as long as you avoid the drug. You stated you were taking Ibuprophen for headache.

Hi everyone,

I've been gone for a long time, but I still wanted to update you all on what's been happening. Essentially, I have been fine since the last time I posted. My platelet count has been in the 220's and 230's.

A couple of weeks ago I got a UTI where I was prescribed Cipro, and it didn't go away after my five day course. Then I noticed blood in my urine, so I was prescribed macrobid. I also took some cystex to help with the pain.

Then bam, petechiae all over my legs and around 10 unexplained bruises on top of that. I got really concerned, but right after stopping the antibiotics, it all went away. I'm not sure if it was the cystex or macrobid that did it. Cystex has an NSAID within it, and I didn't realize it... so I'm thinking that could have been the culprit, but Macrobid also has rare reports of causing thrombocytopenia.

I hope everyone else has been well.