Brand new ITP dianosis.

Wow what a weekend. I went to the lab for yearly blood work on Friday. Saturday just before noon I get this call from my doctor: "I am going to put a big kink in your weekend. You need to go straight to the hospital I have a room already waiting for you. Your platelet count is dangerously low this cannot be put off."

I pack a small bag still not sure what is going on. I get to the hospital and they take me to the big C floor. Stepping off the elevator the wall is covered in crosses in memory of the people that had died of cancer in the past year. Now I am starting to get really nervous. I get to my room and almost immediately I am getting huge bottles of blood drawn from each arm and an IV. Within an hour the nurse comes in with a big bag of platelets and says my level on Friday was 11.5 and that it is now down to 5.5 so I need to have a transfusion immediately. I finally see a doctor at midnight. (his normal time for rounds on the weekend I was told) He told me that they did not know what was wrong yet and that a specialist would see me on Sunday morning. So I did what we all do now when we are trying to find out stuff. I asked Google. Needless to say there was no sleep on Saturday night.

I saw the Hematologist Sunday mid morning. He had already ruled out all the really bad stuff, but was not sure yet what to call it. My count had gone to 25.0 after the transfusion but was down to 22.5 Sunday morning even though I was getting high doses of IV steroids every 6 hours. He said I was out of the danger zone for now and that if I was up to 30.0 on Monday I could go home and that they were still running tests on the original blood draw to determine a cause.

Monday morning at 4am I had the big draw. Hours later while waiting on the doctor to come around I pried the count out of my nurse. Reluctantly she told me I was down to 20.0 and would most likely be staying another day. When the doctor came around I was overjoyed when he said they decided to let me go ahead and leave. The old bed and pillow sure were great last night!

They did a final draw before I left the hospital to test. For now it is being called ITP but the blood doc says possibly Lupus or medication induced Lupus. They are testing that final draw to either confirm or rule out both.

I see the blood doc on Thursday for the results. He said we would be seeing each other a lot over the next months as we monitor my counts. For now I really do not know what is next. I am on the oral Prednisone that it looks like everyone gets first round.

I guess Thursday will be a big day. Hopefully I will get some answers and figure out where things head from here.

I almost forgot to mention that I look like someone has beat me with a bat right now. I didn't know there were so many shades of purple. Lucky I like that color I guess.

Well not sure what any of this means but it did feel good typing it all out. :dry:

Wow, you sure had a traumatic introduction to ITP! It's not always that scary. When doctors are a bit more calm about low counts, they don't scare the patient half to death like that. Do you have any symptoms other than the bruising? When did that start, before or after you knew about the low counts?

Why are they looking into Lupus? Did your labs show anything or do you have symptoms?

I had noticed about a month ago I was bruising more than I used to but really did not think much about it. I had a hip that was hurting and OTC meds did not help. I went to my general doc about the hip and in passing mentioned the bruising. He did not think much about it but suggested the blood workup since I had not done my yearly physical. I went for the blood work on Friday because I had taken vacation for the day and needed to fast. That is when it all hit the fan.

The Lupus angle is being looked at because my father has Lupus (currently in remission). So since nothing else was making sense they tested something that showed a very slight indication of Lupus. Not sure if that is all accurate, I am still trying to catch up to the wave on this whole mess.

They are running some special tests on this last draw that will help determine the Lupus. Thrown in the mix I had a laceration 60 days ago that required and ER visit. I was given an antibiotic that the blood doc says can cause medication induced lupus.

The crazy thing is I used to go donate platelets. They loved seeing me because of my blood type and my count was always so high I could donate a double or triple every time. Now I want those back. :laugh:

Did you tell your hematologist what medicine you took for your hip pain? Could that be a trigger?

My son's experience is no better than yours. My son had frequent nose bleeding so I mentioned to his ped during annual check up. Doctor asked for blood test, and platelet count was 15k. He said come back a week and recheck it, the next week he had a fever and white cell drop to 2.1. It was Saturday and on call doctor called me and said you need to come to emergency room, and prepare to stay over night, take deep breath, drive safe... We went to the supposedly best local Children's hospital and was referred by nurses and in document as the leukemia boy... And the fellow doctor told me before any further test that "I think it is leukemia". I still hate her...

Result come back not leukemia. Then another week of sleepless wait for Faconi anemia, negative. And several weeks for tons of genetic abnormal test, all come back negative. Now doctor still scratching their heads with his platelet count stable at around 20k and red and white cell come back normal for a month.

I did tell them about the hip meds. I was taking Naproxen which they said could suppress platelet production but not stop it or drop my levels to >6K. They said it probably made what ever this is worse but did not cause it.

The antibiotic I had 60 days ago is the possible trigger according to the blood doc. It was a sulfur based drug, I do not have the name of it handy.

I hope to get answers on Thursday.

Antibiotics can trigger ITP but that does not always mean that ITP will go away. Sometimes they imply that drug induced ITP is temporary. That is not always the case, but it is possible.

They probably tested your ANA which is usually the first test done for Lupus. A slight elevation means nothing and can actually be elevated due to ITP. Hopefully, you are not developing Lupus. I have it; I was diagnosed with ITP 8 years prior to the Lupus diagnosis. As you know, it can be difficult to live with.

Good luck with your tests.

When did someone start beating you with a bat, errr ahhh, I mean, when did the bruising become apparent?
Just off hand, 60 days since antibiotics seems like a long time.

Naproxen can cause ITP

The doc told me that the possible reaction to the antibiotics can be delayed. I am just trying to hit the ground running here so I really don't know a lot. My hope is I will get some kind of answer Thursday. At this point I just want to know so I can start working on this. The whole not knowing anything is crap.

My doctor thinks my ITP was induced by my ecoli/sepsis back in March and the huge amounts of vancomycin I received as well as a month of cipro.

E coli is more likely to cause TTP or HUS but Cipro & Vanc are known to cause ITP

I think he meant the antibiotics I needed to take for the ecoli/sepsis.

ITP could also be triggered by whatever you were taking the antibiotics for. My counts drop when I have an infection even those that don't require antibiotics.

Advice - find a hematologist who has experience with ITP - it sounds like your doctor was freaking out.

Are you noticing any bleeding like gums, or nose or anywhere?
Erica

One other thing that I just remembered...sulfa drugs can trigger Lupus.

Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population. Trimethoprim/sulfamethoxazole (Bactrim®) is an example of this category of antibiotics.

www.lupus.org/answers/entry/which-medications-and-herbal-supplements-should-be-avoided

It might be a god idea from now on to avoid them since you may have a predisposition to Lupus and autoimmune disorders. You may never get it, but you have two red flags: ITP and your dad.

Well I got good news today at my blood doc. My count has gone from 20K on Monday to 39K today. The prednisone seems to be working at 60mg daily. They want to get me above 50K before trying to wean off it.

Don't let them keep you on it for too long at that dose. It's not the best response for such a high dose. You might need a second opinion.

When is your next count check?

Best of luck for a great number.

The blood doc said he was hoping for >50K. That's why I am staying on the 60mg. I have a lab on Friday next week and see the doc with another lab in 2 weeks.

Having been on 60mg myself I'd sure want more than 50K out of it! Nasty, vile stuff! And the thing is, once you start tapering down the count might not stay >50k. I agree with Sandi.

It will be interesting to see how your doctor has you taper that dose.

After doing more and more reading one of the suggestions I have seen is that you should chart your count and meds. I know I do not have a history yet I had to play around with Excel and see what I could come up with. I saved the chart as a word doc so it should be easy to view. Is this something that anyone else does?

For some reason I cannot attach the file in any format.:huh:

I never charted, just tried to always get copies of my labs. I remember exactly which meds I responded to and which ones I didn't respond to. I seem to get either a huge response or no response.

I chart everything. Meds, dosage, side effects, test results, bp (at the beginning) and any symptoms. It has been really helpful to get some perspective especially to help me and the doctor easily track dosage and effect.

D.Mann I did for the 1st 4-5 years after diagnosis since I was on prednisone a long time - besides having my count & prednisone dose I noted if I was sick or anything else unusual. My hematologist really liked it. I think it is a good idea for you to do.

Yesterday was platelet count day. I have been on 60mg prednisone since October 11. Last week I was only at 39 which disappointed me a little. Seven days later and I more than doubled, now at 109. I spoke with the blood doc's PA and asked to start tapering the meds. Today will be day 1 at 30mg.

You are going from 60mg to 30mg overnight? That could cause a drop. My count went to 142k [know that thanks to the chart I kept] and so they hurried me because they wanted me off prednisone before we moved overseas, well cutting the dose in 1/2 caused my count to crash & had to go back to 60mg and go slower.

Good luck!

Counts are great but that is a fast taper. As Melinda said, going down too fast can cause counts to crash. It's also harder on the body as far as side effects.

Melinda, after the crash, going back to 60mg, what was the first dose reduction? Was it to 50 for a week, or ?

I went down in 10mg increments per week from 60 to 30. That is fast....

Hal9000 wrote: Melinda, after the crash, going back to 60mg, what was the first dose reduction? Was it to 50 for a week, or ?

Hal I went back to:
60mg for a week which took me to 144k
to 50mg for a week which took me to 156k
to 40mg for a week which took me to 119k
stayed on 40mg another week which took me to 182k
to 35mg for a week
to 30mg for a week and count dropped to 60k
back to 40mg count dropped to 50k
then dropped 5mg about every week and I did stay fairly stable.

This is what is neat about keeping a "log" - I was diagnosed in 1989 and I can go back and see what was going on regarding count/prednisone/sick/not sick etc

However after diagnosis we moved to Tokyo & that was why the big drop in prednisone dose, they wanted me off it before the move but it just didn't work & I moved while taking 60mg - I had an absolutely fabulous hematologist there, turned out he knew & had gone to some classes with my US hematologist. After Tokyo we moved to Hong Kong and the hemtologist there really didn't know much about ITP and would panic anytime my count dropped even a little bit so for that reason I elected not to totally taper off until we moved back home.

More is known now then when I was diagnosed - but a big drop in prednisone still could be a big drop in count. And as Sandi said, harder on the body.

So today is the 3rd day on my half dose meds. Not sure I can really tell a difference. If this were to cause a major platelet drop, what signs should I pay attention too? I see my blood doc Thursday for a count and review.