I was recently diagnosed with ITP

I'm a 35 year old male in good health except for my recently diagnosed ITP.

On Monday, 10/17/11 I started noticing red dots on my legs and feet. My largest dog scratched me and instead of a scratch I got purple dots. I got a dark bruise on my leg with no injury. The next morning, 10/18, I had spots on my arms, a few on my face, one in my eye, and a few dark spots in my mouth. I called my doctor's office. He was booked, but they scheduled me with another doctor in his office. When she grabbed my arm to examine me her thumb caused a bruise. She called my doctor into the exam room and they agreed on ITP. I had some blood drawn and was sent home. An hour later the doctor called me while I was at Walmart and told me to go to the ER. She asked if I was with anyone who could drive me. I told her no but that I felt fine until she called and scared me.

I asked everyone who worked in the ER why my doctor chose the ER for a low platelet count, and answer I got was that they can get tests done fast. The nurse told me that my platelet count was 2 and that they needed to re-test it because it could have been read wrong the first time. The result of the new test was 1. They began thawing two bags of platelets to give me a transfusion. During the transfusion I was moved to a regular hospital room. After the transfusion my count was up to 3. That wasn't the dramatic increase they were looking for, and by that time a Hematologist had finally responded to their calls and switched the treatment to IVIg (80g), rather than the 10 bags of platelets my regular doctor had ordered for me. That night I was given 20mg Prilosec, 40mg Prednisone, 100 mg IV injection of another steroid, 2 Tylonol, and a Xanax. More medications than I had taken in the last 10 years combined. I didn't sleep at all that night.

The next morning, 10/19, my count was back down to 1. My Hematologist came in the room, saw I wasn't bleeding, and turned to leave. I asked him why my count was still low and he said the medicine can take a few days to work. Just give it time. My therapy was set at 20mg Prilosec once in the morning and 40mg Prednisone twice a day. After watching Game 1 of the World Series from a hospital bed, I finally slept that night, but woke up shivering and freezing in a pool of sweat. It was probably the Prednisone.

On Thursday 10/20 my count was up to 10. I was happy, thinking I was getting better, but on Friday 10/21 it was back down to 2. My Hematologist ordered another 80g of IVIg for me. After brushing my teeth, my gums started bleeding. I the blood did clot, but it covered 4 of my teeth. A few hours later I rinsed with ice water to remove the clot and seal the gums. It worked. So did the 80g of IVIg that I was given on 10/21.

On Saturday, 10/22 I was up to 6, and on Sunday, 10/23i got to go home because my count was 42. They began to taper the Prednisone immediately upon release. I got 2 big bruises from very minor stuff around the house on 10/23, but I was happy to be home, so it didn't bother me much.

On Tuesday 10/25 my count was 172, and on 11/1 it was up to 404. My Prednisone taper was continued, down to 40mg/day. On Saturday, 11/5 I got the blood test for h pylori at my request and had my count checked while they were at it. Results: H pylori antibody positive and 360. Yesterday, 11/8 my count was down to 258. My Hematologist did not seem the least bit concerned that my count had fallen by 102 in three days. He said counts fluctuate and I am still in the normal range. He continued to cut my Prednisone dose. It's at 30mg/day now and scheduled to drop to 20 by the weekend. He doesn't want me to get tested again until next week, when he is out of the office. Does anyone think I should ask for a test Friday morning while he is still in town? Has anyone else's platelet count fallen that fast? Did it keep falling?

I started my Prevpac for h pylori today. I know the IVIg can cause a false positive, but my h pylori antibody count was 1.41, and anything over a 1.0 is considered positive. I met with a GI doctor today and he said any other test they do can give a false negative due to the Prilosec. No other h pylori tests were ordered until after the Prevpac because any result would still lead to taking Prevpac to eradicate any possible h pylori infection in the long shot hope that it can put the ITP into remission.

I know this is a long first post. I'm sure anyone who read the whole thing was interested enough to keep reading and anyone who skimmed still got the info they wanted from it. Hopefully we can all be cured someday.

-Dave

Hi Dave. Your story sounds pretty typical. I'm glad you found us and hope you stay as long as you need us.

Platelet transfusions don't work for ITP, I guess you found that out. Having had both IVIG and Prednisone, it's hard to tell which one you are responding to. Your doctor seems to be dropping the Prednisone pretty fast.

I don't really think you have to have blood work on Friday, but you should do whatever makes you feel better. You may be able to tell by symptoms if your counts are down and can always get help if you need it. Counts can drop fast, but they can also go up when you least expect that.

Keep reading, keep learning. You will be okay!

Hi Dave,
I read the whole story, very similar to mine except I had lot's of bleeding. I also tested positive to H-pylori and had to have two rounds of the antibiotics as the first lot didn't get rid of it but it didn't resolve the ITP either but don't be discouraged for some it does (I was hoping it would).
When I was on prednisone I got big fluctuations in counts, I had one cbc done one night and another done about 18 hours later and my counts had dropped by 100k, I was lucky though at that stage my count was 210k so I only dropped to 110k and that ok, I don't really know the reason for this but I really didn't think of it as a big drop, I just think my count was unusually high at 210. My count stayed at between 80 and 120 which seems normal for me so as you go on you learn that just because counts fall doesn't mean that they will continue to fall.

I am like Sandi, it seems really fast to drop the prednisone, I was on it for about 10 months and only tapered by 5mg a fortnight, but everyone is different. The fortnight I reduced the prednisone counts would always drop but after a few days they would come back up again. As far as having a cbc I think if it will allow you to relax a bit, have it done, peace of mind to a good thing.
Good luck with your journey Dave, I will look forward to hearing how the H-pylori treatment goes. Stick around and let us know.
Milly

Glad your prednisone make your platelet back to normal, prednisone does make blood count fluctuate but since your count is in triple digit, it's a good news.

I've been living with 20-30k counts for the last four years and almost never reached count above 150.

Taper slowly and keep monitor your body is probably the best advice i can think of.

You have to just love those MD calls out of the blue telling you to get to an ER immediately! Afterwards I can chuckle about it but when I arrived and the nurse asked why I was there, I told her my MD said my platelet count was 5 - I sure got a lot of attention then!

Seriously, ITP scared the devil out of me! Those first few weeks were H**L, test, RX, nothing working, platelets staying < 10 and the MD's not really telling me much. When my daughter brought me about 30 pages re ITP printed off the Internet - I really got concerned then!

The good news - 15 years later and I'm still kicking. Had one "relapse" if you want to call it that but ITP wasn't an issue for 10y. My point is this "illness" upsets our life like a bomb - little warning, little info, to much time to think the worst. Yes, it's bad, but generally not life threatening- just seems like it. Time and knowledge are your best solutions. It may take a while to find a treatment that works and the worries will likely continue for quite a while, but eventually it is possible to accept your "new normal".

As you've heard - we've been there - done that! Ask questions here - lots of them - nothing is trivial or stupid. There's an amazing amount of ITP experience and knowledge here - sometimes it was the only place I could ask the scarey and simple questions.

Sandi, thank you. I don't know which treatment I responded to either. My last IVIg treatment was 26 days ago. My count today was 174. Could the IVIg still be keeping me in the normal range? I've got 84 fewer platelets than last week. My dose of Prednisone was cut from 30mg to 20mg two days ago. Could that explain the drop?

Milly, thanks for the info about your counts on the Prednisone. It helped me relax the past few days before being tested today. The first week of the H Pylori treatment has gone well. The Prevpac ended my three weeks of perfectly normal digestive function that the Prilosec/Omeprazole had allowed, but that is the only side effect and it's not bad.

Redmage, thanks for the info. I agree with all three of you that I am being taken off the Prednisone too fast. I think it was used as a quick fix rather than a therapy to try to induce remission. My Hematologist's strategy is to take me off all medicine and see what happens. I hope it works, but I made an appointment with a different Hematologist in the next town for November 25 just in case it doesn't work.

SteveC, yeah, "GO to the ER immediately" is not a good thing to hear over the phone from an MD. Thanks for sharing your ER experience. I can certainly relate. How long did your count stay under 10? Did it go back to normal on it's own or did a treatment finally work? What did you do to bring your count back up 10 years later?

I'm happy that I've had a normal platelet count for three weeks, but not happy that my count has fallen by 230 in two weeks and is still heading down. I have vacation time from work this weekend to attend two sporting events Saturday and have my girlfriend move in on Sunday. Hopefully they will let me get a count done Saturday morning so I can enjoy the weekend or at least be worried for a reason.

Dave - IVIG doesn't keep counts up for most people for very long. A few days or a week are average. Some people do have a longer response and there's no way to know where you fit in since you are also on Prednisone. Yes, your steroid taper and IVIG wearing off are most likely the cause for the drop, but sometimes people maintain counts after treatments and they become stable.

As hard as it might be, try not to spend time expecting drops because it seems to be the trend. It may not happen and you'll worry for nothing. Enjoy your time off and focus on the things you planned to do. I've shared this before, but don't know if you read it: I played a mind game with myself and it worked. If I got a count done and it was 174, in my head, it stayed 174 until I had the next count and they told me differently. Of course, if I noticed excessive bruising I would know otherwise, but I honestly didn't spend time scouring my body looking for anything either. It was just a way to keep my life in normal mode until I had to deal with it.

Dave, In my case I stayed < 10 for 2 months because my platelets were unaffected by steroids (pulse and usual taper dosing), multiple win-rho accomplished nothing and IViG was temp for two weeks. Splenectomy @ month 3 resolved my issue for the next 10y. At that time I didn't know enough about other treatments and wished I had so I could have discussed/pursued them but that's history. 10y later and surprise - steroids still didn't improve platelets so we went with Rituxan infusions (which has its own scare the devil out of you possible side effects). I didn't show any change until week 9 after my first treatment (so I went thru all 4 infusions and didn't show any positive platelet improvement for another 5 weeks).

By now you've heard the mantra but I remind you "what works for someone else doesn't mean it will work for you". We all know the anxiety of finding the treatment that controls our ITP. We also share the belief that knowledge grants us power in participating in our treatment discussions and decisions. Ask questions - lots of them - but never lose sight of our mantra and I pray it will help you if you have a treatment journey different than ours.

Healthy 37yr old when I was diagnosed. Unusual brusing/fatigue is what prompted me to get things checked. I felt so alone. I have been as low as 2k. At 13k the ED Dr suggested wraping me in bubble wrap. He told me to STAY home and rest. Do not go any where!!!! While waiting for the results one time the Lab Tech says "Holy S***", when the numbers showed up. 2k she says
That was one of the worst feelings. Prednisone raised my counts at first, but they fluctuated quite a bit and dropped as I tapered off. Had two platelet transfussions with no luck. Platelets were destroyed right away. Two rounds of Rituxin first lasting about 16 months, the last being two years ago!!! I also played the mind games as Sandi mentioned. For several years ITP was all I thought/worried about. I finally convinced myself that stressing over it was not helping. I do not let the fact that I have ITP bother me anymore. If my counts drop again I'll just go with the flow. Stay positive!!!

Thank you Sandi, SteveC, and Dean for the information and advice. Since my last post my count dropped to 150 on 11/19, then went back up to 174 on 11/23. They cut my dose of Prednisone to 10mg/day the next day, and on 11/30 my count was 238. My Hematologist said counts in the normal range do not predict the course of my ITP until A) they stay good for two more months, or they fall. He said counts usually fall within a month or two of the Prednisone dose dropping this low, but if they hold that is a very good sign for the future. Next week I only take 10mg every other day.

Last week I met with a different Hematologist. He was surprised that I had already been treated for H Pylori and even more surprised that the H Pylori test was my idea. He said most of the time H Pylori is overlooked because the data on it is inconsistent, but since the side effects of antibiotics are so low compared to most ITP treatments, it's worth a shot even if the odds of it curing ITP are low. The one scary thing he told me is that at this point we can't rule out Lymphomas, particularly Non-Hodgkins Lymphoma (NHL). I have no symptoms, but I did some research and found that in half of the people with both NHL and ITP, ITP appeared before any NHL symptoms did. I brought this up to my original Hematologist yesterday and he said, "There is no need to worry about low grade lymphomas at this point." Just as I started to breathe easier he said, "because we can't cure them anyway." That was not the answer I wanted. He said they might not even show up on a test until there are symptoms and all he would do is treat symptoms anyway, so no need for invasive tests at this point, especially since the odds are that I just have ITP, which sounds funny since the odds of getting ITP are 1 in 20,000.

After he found out I had seen a different Hematologist in the area to get more information, my first Hematologist was a lot more willing to discuss ITP with me and didn't seem as rushed to get to his next patient. The second Hematologist agreed that IVIg and now Prednisone are the correct treatments, so I am still undecided which doctor I will choose. I have appointments with both of them in two weeks and with an expert at Northwestern in Chicago on Dec 27. I hope this is all overkill as my count stays normal, but if it falls, I want to make sure I get the best possible treatment to put ITP into remission for as long as possible without compromising my immune system any more than necessary.

Dave - sounds like your doing quite well! Good counts!

No, no reason to worry about lymphomas. It is not common at all from what I have seen here.

Glad things are looking better. You're in a good spot regarding a choice of MD. I think that's a very good position to have what sounds like two good MD's who will spend the time to answer questions and accepts that questions are not a challenge to his authority.

I emphasize Dave's and Sandi's comment about anxiety, second guessing and generally turning your life over to a pursuit of ITP answers. I wasted to much energy obsessing about what might happen. It's not as if I had any control or influence. Every new day is a blessing - regardless of my health and I want to live it to the fullest extend possible.