Newly diagnosed and need follow up advice

Hi All - I've been reading on here for a few weeks now and finally decided to take the plunge and ask for some advice.
I was diagnosed with ITP in August, my levels were at 5 and I was admitted to the hospital and given hemoglobin (I think, something along those lines) and prednisone. I was discharged after 24 hours and I got above 20, I continued to climb back to a "normal" range. I was tapered off prednisone over about 6 weeks and stayed in the 140s. I went back in the beginning of March because I saw increased bruising, headaches, and that awful fatigue. I was at 41, dropped to 40 the next week, stayed at 40 the following, went up to 89 the next and just now dropped to 74. I have no follow up care plan, I don't even feel like I've every really been sat down and had ITP explained to me. When I was finally released after my initial diagnosis, they just said come back if you feel low. They continue to say you're not low enough to treat, come back if you feel low. So I've been back every week in March because it drives me crazy to not know and to be considered "low". What does follow up care look like? Is it normal for them to just let you go if you're not low enough to be treated? I am so new to this I don't know if this is a normal pattern for me, but I can't help but think I'm going to keep dropping. Doctor keeps saying I'll be fine just hanging out in this range, and I really don't want to go back on prednisone. I guess I just want some guidance on what others follow up care looks like when the drop again.

Hi, I was also recently diagnosed and figured I’d share my follow up care since then! So, after finding low platelets from my physical I was sent to the ER for a platelet transfusion in December and I met my hematologist there as he was the one on call. The very next day he saw me in his office and it has been constant trips to his office and the hospital since then. He formulated a plan and then some right away and explained everything to me and where he would like to see me before starting to slow things down a bit! I am very surprised they let you go without explaining the ITP more and not to mention keep monitoring you for a while since you say you felt low! I will say your recent levels look pretty good, but even then I’m surprised they haven’t given you a backup plan in case you bottom out again! You should write all the questions and comments down before your next appointment with your hematologist and be sure you get answers, I have had to do that with a few things myself. Hope this helps a bit, good luck to you!

Treatment isn't usually commenced unless count is below 30, just watching and waiting to see what happens to your count & symptoms if you have any.

At the hospital, they probably gave you 'IVIG' aka InterVenous ImmunoGlobulins, aka gamma globulins. Gamma globulins are a subset of immunoglobulins. Google search is your friend.
en.wikipedia.org/wiki/Immunoglobulin_therapy
en.wikipedia.org/wiki/Gamma_globulin

Since I don't respond to steroids, I often finding myself suggesting them to those that do, LOL. Take advantage of something that I can not. And with that, you might look up what a 'four day Dexamethasone pulse' is. As I recall, user member 'GrouchoMarx' has done that recently. There is a PDSA forum search page too.
pdsa.org/discussion-group/search.html

I've had ITP for 10 years, have had numerous single-digit counts, and have never once been sent to the hospital for it. I've also never had IVIG, but was given an IV steroid at my doctor's office on a couple of occasions. He doesn't bother with that anymore. I now use NPlate but still have cyclical episodes of counts below 20. I don't take prednisone daily; but depending on the severity of the physical signs that show my count is sliding, I take between 10 and 20 mgs of prednisone for 2-3 days as a rescue. The method has my doctor's approval. By the time I get my weekly count and NPlate shot, the pred will have saved me from single digits and generally put me in the high 20s to low 40s instead of 4-10 range.

Thanks to the wonderful folks here who taught me this trick. It was totally their idea, nothing my own doctor would have ever thought of.

midwest6708 wrote: ...
Thanks to the wonderful folks here who taught me this trick. It was totally their idea, nothing my own doctor would have ever thought of.

I haven't been on here near as long as others to know. Weren't the prime movers to that idea 'momto3boys' and 'poseymint'? An abbreviated use of a 'dose pack' or something?

I've had ITP for 5 years. Just the initial day of my diagnosis in hospital . I've never had IVIg or a platelet transfusion.
The longer you have this condition the easier it is to manage. You rule it not the other way round.
Having low counts per se doesn't worry me at all. It is the symptoms of low counts that get on my nerves. Oral blood blisters are a pain and is very difficult to nurse patients with blood dripping from one's nose therefore as a preventative measure I boost with a couple of days 10-20mg Pred if I get run down/am under a lot of stress/have an infection.