Another new inductee into the VIP that is ITP

Hello, hello!

Name's John and I've just recently been diagnosed with ITP on April 5th. I'd begun to see a couple nasty bruises and lots of petechia appear virtually everywhere quickly just a couple days prior. In going in to a GP, he did a CBC and we found my platelet count to be 3K with everything else in the green. Needless to say, there was a bit of panicking involved and he recommended I get to a hospital immediately. I ended up getting to a hematologist instead who believed I wouldn't need to be hospitalized and told me to remain in one place, and started me on 80mg/day prednisone. I happily jumped to 32 in just 3 days and things were looking pretty good. Unfortunately, I leveled off some. Weekly there's been an average of 5K increase while maintaining the daily 80mg dosage (37, 42, 55). After 3 weeks at that level he's had to start tapering me down, and given the very slow increase since the initial burst, he's hesitant to drop me any faster than -10ng/day/week. I just had a CBC Wednesday after a week of 70mg/day and already the counts started dropping again (slowly) to 48. He has suggested that perhaps this week's number was a fluke (or perhaps the previous number 55 was a fluke) and to not worry until we see next week's number as he has now dropped me to 60mg/day.

I felt prompted to go on a big hunt on all the information I can find on anything related to this condition and I've gotta say I'm really glad to have found this website. It's really helped alleviate a lot of my and my family/friends worries.

In the midst of the story so far, I've had a bone marrow biopsy which the hematologist has said showed no abnormalities but sounded as though there was a little concern that the sample wasn't satisfactory enough. He's however dismissive that something would have been wrong so I guess I have to take his word for it. He's also pretty gung-ho on splenectomy if things continue to get sour with the counts. After reading a lot here I feel inclined to compile a list of alternate options to show him and likely go looking for other opinions as well. I've begun to think he isn't as familiar with this condition and current events with it as one might hope :dry:

On top of this, I'm between being able to be covered by insurance. I'd stepped down my position at work some time ago to go back to school to finish my degree, and recently I was almost complete when a few other life situations came up (financially) so I'd returned recently to full time. Since I was gone, I became ineligible for insurance and coming back apparently isn't all that easy to get coverage again. My biggest concern is that a lot of really expensive things are going to have to happen in this window before I can get any sort of coverage again, not to mention the extra 6 months or so that the insurance company is allotted to ignore coverage for the start of my plan. What's worse is that he didn't communicate that I could have returned to work after the first 2 days - I'd been staying at my parents' house this past month thinking I shouldn't go anywhere or put myself into a position of getting injured.

So here I am at 27, uninsured, without a degree, and worrying about losing my job. A little much to take in lately. :sick:

Despite this, I'm optimistic. I look forward to sharing stories and experiences with everyone here and seeing this thing through! I thank you for reading my little rant; I understand the majority here have this condition in much worse ways and any time there is anything I can do to help anyone, I will.

Hi Frag! Nice to meet you.

Yes, bad time to be without insurance. It's too bad you don't respond well to Prednisone, because that is the cheapest treatment. There is another steroid which is more potent that you could respond to....it's Decadron. It's also cheap and might be worth trying. The rest of the treatments are pretty expensive.

As for the hospital, not everyone is hospitalized with low counts, so you could probably avoid that if your symptoms are minimal.

Things look bad now, but they will get better. I know that feeling and truly, you never know what is around the corner. Keep your optimism!

Fraggy (aka John): Glad you posted. Yikes, you have sure had a run of it. What led you to a Dx of ITP? Mine was a routine physical, although I had a couple of unexplained bruises I simply shrugged off - stereotypical male response - shouldn't have done that! :side: You've already made a good step in locating a hematologist vs GP. Many GP's, even some hema's, simply don't have knowledge or experience beyond what they quickly research and seem to push the splenectomy option. When I was first Dx I spent hours & hours scouring the internet trying to learn all I could. IT would be fair to say I was obsessive about it. But much was med speak which didn't help and some was the opposite of what I found elsewhere until I found this place.

I sure wish my MD had tapered the pred @ 10/week! I'm one of those who are unresponsive to it but still have many of the side effects (sleeplessness & irritability but not the moon face effect). My taper was 5/week and seemed to take forever.

If the pred doesn't hold perhaps you can try the Decadron Sandi mentions. Many here saw success with it and considering the insurance issue it might be worth it. There are several other fairly successful Rx but as you've probably heard they're relatively expensive.

You've probably read that a splenectomy, like all ITP treatments, isn't guaranteed to resolve ITP. I went that route and fortunately it worked for me - but 10y later it stopped. I still consider it a viable treatment in some circumstances. The cardinal rule for ITP treatments is there's no definitive treatment that works for all and what works for one doesn't mean it'll work for me. That's frustrating and scary.

I was outwardly optimistic but internally worried about my family. It took a few months before I would admit that to myself and eventually to others. I do believe that ITP isn't the monster we envision when we're given that initial diagnosis, but it takes a while to come to grips with it!

You don't mention but I hope the MD questioned your use of food supplements, OTC drugs, health foods etc?? Some such items are known to be platelet unfriendly and trigger ITP. If not, please consider that possibility and discuss with your MD.

Stay the course of optimism but don't hesitate to ask any questions here. We're not MD's but collectively our experiences can provide insights to treatments, clarifications to medicaleze and a place to simply rant - we've all been there and understand the frustration and anxiety that often accompanies ITP. You've found a resource that scours the internet and shares all thing ITP.

Hi Fraggy and welcome to a pretty special group, sorry you had to find us but if these people help you as much as they have helped me you will do ok.

Just wanted to throw my experience at you. I to was on the pred road and like you was on a pretty high dose for about one month with counts all over the place but after about six weeks the Pred did seem to kick in (kicked me in the bum as well, side effects were pretty bad). My counts did start to go up slowly, every time I dropped down in the dose my counts followed but I changed from weekly taper to fortnightly, so they would go down the first week but up the next.
Anyway when I finished the pred last November counts were around 120 so this was pretty good(I was on it for about 10months in total). My last count was 180 with no treatment so I have been at normal counts now for 5 months. I did have two lots of IVIG as well but I am going pretty good. So don't give up yet on the Pred, don't know why it took a while to work for me.

For smart people Drs are really silly sometimes, why did they not explain to you that you could leave home. I would have been pretty upset about that.

I really understand that things are hard at the moment but they will get better, a combination of the initial dx of ITP and the blur of the prednisone really throws a curve ball at you in the beginning but like me you will learn from here good questions to ask you doctor and how best to help yourself.
Don't worry about the rant and although yes there are worse cases of ITP at the end of the day we all have it and it effects all of us in different ways. Hopefully you like I will take inspiration from the people on this board and the battles some of them face. I think I have thrown some pretty silly thing at them over my time here but they have always helped me.

My last bit of advice is to read Steve aka Gorts advice, I found this to be the best thing(currently posted on my fridge for freak out days) I think Sandi has it right at the beginning of the section.

Hi Frag!
I am glad you found this site. It was a sanity saver for me! My doctors really over reacted too. This site gave me a healthy perspective and lots of research. The people are very knowledgeable. Also, once you get over the terror (at least it was that way for me) of having low platelets, life will still go on. Everything pretty much returned to normal even with my low counts and treatments interrupting things. Also, does your work's insurance plan have cobra. Its a form of emergency coverage, but I don't know how expensive. It won't be as expensive as some treatments. Good luck to you. If you're feeling down or stressed come to this site and just read. It helped me immensely to be around people that were going through what i was. I'll be thinking about you.