Well after 6 years I am back.....

Six Years ago I joined this site and posted the following.

I am a physically active and in good shape, I am a police officer and I run three miles three times a week and work out a couple times a week. Up until a couple of days ago I thought I was a very healthy physically active adult male. On 02-27-07 I got quite a surprise.

I came home from work and took off my shoes and socks to get changed into my work out clothes. I noticed some spots on my legs. I inspected the spots closely and realized they appeared to be “petechiae”. I am aware of this condition from my profession in law enforcement, because I have been trained as a coroner. This was definitely not a rash, it was not raised and it was under the layers of the skin. I checked the rest of my body and found it in several other locations including on my arms, stomach, and inside my lips.

I started to do some checking on the internet and made some scary discoveries. I decided that the condition I was observing could be ITP or even more serious Lukemia. I decided to make an appointment to see the doctor firs thing the next morning.

2-28-07 I went to the doctor, and showed him my symptoms. I did not tell him my diagnosis; I asked him what the thought it might be. He felt it was a rash and thought I might have had an allergic reaction. I gave him the information I had printed from the internet and asked him if he felt it could be ITP. He said he didn’t think so and “lets hope not”. He consulted with another doctor in the office and decided it was possible, so he sent me to the lab to have some blood work done. The Doctor said he would call me with the results.

Approximately two hours later I received a call from the doctor. He told me to go directly to the ER for a blood transfusion, and he would have a Hematologist meet me there. I was told that my blood platelets were 2000. I knew from the research that I had done that normal was 150,000 to 450,000, and serious was anything under 10,000. The doctor explained that I was in danger of spontaneous internal bleeding. All my other blood counts are normal, and there are no other symptoms for fatigue or illness etc.

I went to the ER and met with the Hematologist. I received three units of blood platelets within the first couple of hours. I also received a dose of steroids (40mg Decadron) which he told me he wanted to continue for the next 3 days. After the transfusion he checked my platelets again and found they were up to 50k. The doctor wanted to have me hospitalized over night, but I discussed it with him and decided not to check in to the hospital. I scheduled a follow up blood test the next day, and as long as the platelets were still holding fairly steady he would not admit me.

The next day when I checked the blood work the platelets were at 40k. The doctor advised me to continue the steroids and check with him the next day for another blood test. On Friday my blood platelets were at 90k, indicating that the steroids appeared to be working.

The doctor wants to try me on WinRho instead of the steroids. I think it sounds like a good option. I have been off the steroids for the past 5 days and I have an appointment with the doctor tomorrow, I am hoping things are good. The steroid medication is giving me TERRIBLE heartburn and makes me agitated, etc. I am not sure I could continue to take the meds.


Just thought I would post my experience for any feedback.

It has been only a week so far but I think I found a good doctor who is willing to try some alternatives not go directly to removing the spleen etc.

Thanks

Greg


So here is the rundown

2k on 2-27-07
2-28-07 Received 3 units platelets and 40mg Decadron
2-28-07 after ...........50k on 2-28-07
3-1-07 40mg Decadron.....40k on 3-1-07
3-2-07 40mg Decadron.....95K on 3-2-07
3-3-07 40mg Decadron (Last dose)

Received results from the doctor today
3-5-07 242K
3-8-07 344K

The doctor was amazed at the response my system had to the Steroids.
He actually was a bit puzzled that it responded so well. He is slightly concerned about a small swollen lymph gland under my right arm. When I was about 8 years old (so 28 years ago) I had an infection and the lymph node did not go back down it turned hard. They operated and removed it. It was not cancerous. The same area under my arm pit has a node that the doctor says is swollen. The doctor scheduled a CAT scan of all my nodes to see if any are swollen etc. He also wants to remove it and have a biopsy. He doesn’t think it is the cause and he still thinks it is ITP, but wants to be safe.


On the one hand I don't want to have the surgery I think just like all doctors they want to cover all avenues even if only slightly remote. However I know it would be better to know now if it is in fact some form of lymphoma. That way we can start treatment right away. If it is not then I can rest easy that it is ITP only, and start managing that.


Bottom line I guess I am having the node removed to be safe.

Results of the lymph node biopsy are negative….good news.


Fast forward 6 Years.

Out of curiosity I checked my platelets at my doctors office when we were running blood panels for my standard physical.

1-15-13 Platelet count was 250K......great no issues.

3-09-13 at 1500 hour, I woke from a night sleep after working graveyard. I noticed bloody cracked lips and a couple blood blisters in my mouth, I noticed petechial rash very evident on my feet and ankles with some petechial rash on my trunk and arms but not very noticeable.

I responded to the local ER and explained what I felt was a re-occurrence of my ITP symptoms. After a blood test I was confirmed correct they indicate I had a platelet count of less than 8k. They wanted me transferred to the local hospital so I had my family drive me rather than going by ambulance.

1700 hours I was admitted to the hospital. 1900 Given a loading dose of 80 mg prednisone. At 2300 -0100 hours I was given 2 units of blood platelets.

3-10-13 at 0300 hours my blood was tested and the count was 3k.

0400-0500 hours I was given one unit of blood platelets.

0700 hours, Dr decided to change to dexamethasone

1100 hours, I was given Rh(D) Immune Globulin Intravenous (Human)
WinRho SDF at the standard loading dose of 50micrograms per kg. A total of 4k micrograms . Slight back ache, small headache and chills shortly after. All but the back ache subsided within an hour.

1200 hour blood sugar tested at 126. Nurse gave me 10 mg

1200 -1400 hours, I was given two more units of platelets.

1730 hours, Checked blood sugar 203. Nurse administered 2 units insulin.

1730 hours blood draw results were 50…woohoo

Bottom line I thought I was cured but I guess I was just in remission I will have this for the rest of my life and I will have to watch things better now. I hope this round of treatment does as good as it did last time and perhaps I can get another 6 year remission.

Wow...sorry to hear of your recurrence. Hope all goes well...can you pinpoint anything that may have triggered it? A recent flu or virus; use of different meds or change in dosage?

I had similar experience a little over a month ago and after aggressive treatment am in remission. Your recurrence reminds me that ITP may be something that I will always have to be mindful of.

Good Luck!

Thanks for sharing your story with us. This is reminder that ITP is always lurking around so we should aways we watchful of any well-too familiar symptoms even when in remission. You responses to treatment very well first time round and hopefully the same will happen to you this time and you will disappear from this boards quickly enough. While you're hanging around again, keep us updated.

Ps before I was diagnosed with ITP I always though that I was getting rash from walking though the bush ha ha silly me.

Pechiachie i meant

I have had a recent relapse also. It is a reminder that this is an ongoing disorder. Hope you respond well to treatment again.

Greg,

If you ever check back on the site, I would really like to know how you are doing. I remember 6 years ago when you posted for the first time. I was in my first remission and was watching the ITP postings. I only got a 4-year remission and then it came back again--but much worse the second time. I am waiting for the results from my CBC to see how I am still doing. Made it three years this time. Like you said, once we have, there is always the possibility that it will come back so we need to be prepared.

DeeDee

OK OK....I better check in with ya all.

I checked out of the hospital and was placed on a pulse dose of Dexamethasone. X days on then X days off. I was testing my platelets weekly and receiving great results. Week 1 I was at 75K then week 2 at 93K then week 3 at 150k week 4 I was at 157K.

The doctor wanted me to continue the Dex for another couple rounds like 3 months total. I did the second round and decided my platelets were high enough there was no reason to continue on a third round. (the side effects were so bad I couldnt stand it, and when I was off I would crass the first day I think it was like 4 days on 10 days off or something like that). I stopped taking them and notified the doctor.

As of mid to late April we continued to check platelets weekly with results now in the 200K range. The doctor said to check once a month and come back to see him in 6 months. As of today 9-7-13 I have been checking monthly with a blood count of 200 K on a regular basis.

Interesting side note on this.

When this incident happened in 2013 I went to the ER first and told them ...I have ITP and I think I am having a drop in my platelets due to the petechia etc. I asked them to take my blood and check the platelet level. I was in the ER an hour they confirmed my assumption and sent me on the way.

So I later get a bill from them.

this is the same blood test I have done every month now at LabCorp that they charge me after insurance $7.50

This F-ing ER wants to charge me $1600

LOL I told them to send me to collections I offered to pay them 30% (still outrageous)

Hi Greg,

It's great that you are doing well!! I had the same type of pulses and am still in remission (2nd time); I get a blood test every 6 months. This is a really good sign that you responded to the Dex pulses. I was told that as long as you don't take any heavy duty meds, you always have a chance of responding to the Dex pulses.

Also, thanks for the tip about the E.R. I will make sure I never again get my blood test unless it is with a doctor's prescription! The E.R. is such a rip off!!

Good luck to you Greg, and please keep us posted. It could have been stress from your job (and being overly tired) that pushed you out of remission. Sometimes this happens. And, you do have a stressful job.

Just thought I would stop in and see how people are doing and leave an update. I am still doing well with no recent issues. My last count was 275k. I am only checking once every 6 months or once a year. Interesting how my body has responded. Just remember not everyone is the same and if you have had recent issues and are going through a scare it is possible that things will get better not worse. I keep my fingers crossed that things continue as they are.

You've had a fairly easy case to manage - I'm happy for you. Hopefully it just goes away or continues to stay so responsive. Thanks for checking in!