In the hospital at 2

After9 days and counting being on my period and petechiae everywhere I broke down n went in to the hospital haven't been in since I had my son 15 months ago. Usually get nplate but having issues with insurance. I got ivig last night and only went up
To 3. I can't remember how fast ivig works anybody know the answer?
Thanks

Hi, for my son's experience, his platelets were 2 then they did the IVIG that lasted around 10pm. His CBC was done next day morning like 9-10 am which resulted to 35K...so that is around 12 hours? I believe for some it is higher and faster though... did you notice lesser petechiae while you are having IVIG? I noticed that for my son.

Sorry, just to add that the doctor informed us to wait for 24-48 hours but usually 24 hours to see some effect. Good luck on your platelets. Hope it will increase soon!

How irritating that your insuarance will pay for a hospital stay and not NPLate! Good luck.

Nope nothing's cleared up so hoping it hasn't stopped working for me

Ouch! I feel your pain on the never-ending period. Ugh, that is definitely the worst. Please keep us updated on how your counts go at the 24 and 48 hour marks. I hope that you'll get a bump from IVIG and not have to resort to something else. Good luck.

I got my nplate yesterday through the hospital but it takes a lil to kick in this morning at 3am platelets were 7 not exactly what I was hoping for but maybe it'll be better when they check them later hemoglobin down to 8.7 not too bad but was 12 last week

I have like ten thousand bruises I can't wait to go home!

I'm sure your 15 month old can't wait for you to get home too. 8.7 hemoglobin isn't too bad. At least they won't be trying to transfuse you (my worst runaway period earned me a hemoglobin of 6.5 and a transfusion). I'm glad they finally managed to get you the nPlate too. Hopefully higher counts and heading home are just around the corner. Hang in there!

I hope something kicks in for you soon, Keli!

Platelets up to 29 3 doses of ivig later got another nplate shot my hemoglobin dropped to 6.8 from 12.8 in a week so I'm going to get a transfusion and hopefully go home

I'm sorry to hear the HGB didn't hold for you at 8. But 29K platelets sure sounds a lot better than 2, 3, or 7! Hope you can just get the transfusion and head out the next day. It should help with the energy and panting when climbing stairs issues

Good luck and keep us posted!

Thinking of you Keli

Got out Thursday night hemoglobin went up to 8.6 and platelets at 65 had three doses of ivig and 500 mg of nplate and I feel horrible too much medicine I'm guessing can't wait for this too pass I feel light headed, sweating and a little swollen, have also had two migraines and a stiff neck, getting better little by little but man this stay really messed me up

I had petechiae Thurs fisrst time in ten year. Had ivig but it took 24 hours to see real increase second treatment had me up from 13 to 18 then later check was 27. But 12 hours later it was 20 and the free fall continued. Today I was 3 and had 80 mg of Prednisone 8 hour prior. Trying to get insurance clearance for nplate to try it and get off peeved which makes me crazy.

Kelirae,

It is a very frustrating disease. Hang in there. Hope you feel human again soon.

Cindy

I feel for you Cindy sometimes the meds are so much worse then the Itp I'm just ready to feel normal again

Thanks Kelirae.

It does.hell that I have been post menupausal since '96. Hysterectomy. Polycistic ovaries. That seems to be related to thyroid issues which can mess up platelet counts I'm told.

*help*

I have Graves - but don't feel that my count went down because of it. Didn't know polycystic ovaries had to do with thyroid - don't have it but will be looking it up & relationship to thyroid issues.

I think that's what makes Itp so frustrating, no one has any idea what really causes it. I was healthy my whole childhood ran track, played basketball, lacrosse, was a cheerleader then I got mono when I was 16 a year later just turned 17 boom got diagnosed with Itp I'm now 30 and I guess I'll have it forever. It sucks but there's always worse things.

Kelirae, That is interesting. I had mono in highschool too and doc gave me Keflex which I became allergic too. My tongue was so swollen I couldn't fit it in my mouth and I had fish lips.

I didn't get ITP until years later after a bad flu. It is something docs always aks have you been sick. I had colitis and a UTI that hospitalized me in June 2015 and kidney failure. It happened again just before Christmas.

But Jan CBC I had 186 count. Went down to 7 and the petechia broke out.

Grace, polycistic ovary syndrome incourages insulin resistence and can be a dibetes pre-cursor too. Hypo-thyroidism can also be a result. Strange ways things from all over tie together to work or notand affect your health. I did not know until this year when they shut down that kidneys regulate the iron and hemoglobin and blood cell production. Have been going to endrocrynologist for years but it never came up.

I'm with you on the annoying nature of ITP Keli. It's interesting that a viral something or other was a trigger for so many of us. I ended up with some bizarro virus when I was around 8 years old (totally fine and healthy before that). Ended up in bed for a week or so and we probably assumed that it was the flu. Then after I was back to normal the bruises started and had a count of 10K. Congratulations to me, that funky virus activated my ITP. Blegh!

Still fighting it 32 years later. Aren't we the lucky ones :sigh:

Hope you are feeling better Keli and on your way back up to normal. At least you get to enjoy chasing your toddler around now that you are out of the hospital!

That I do! I noticed your screen name is mom to 3 boys did you have all your boys with Itp? Did you need treatment during your pregnancies?

Keli,

Yep, I've got 3 ITP babies. I definitely did need treatment during all pregnancies. My counts got lower and lower as I went along, and they had fits keeping my numbers even above 30K in the third trimester. I was on massive doses of prednisone (it was working a little better for me back then, my oldest is 13 years old, my middle son is 11, and my youngest son is 9).

Luckily I had all three of them naturally (with the counts I had I'm pretty sure an epidural wasn't an option, but I really really didn't want one anyway). They couldn't get me to the 50K minimum count for a c-section so I can't comment on what sorts of rescue measures may have been needed if I had required a surgery.

I bled pretty badly during the delivery and required platelet transfusions at the time of delivery (I can't remember if it was for all of them, two of them, or just one of them... it's all a fog now)

The babies all ended up in NICU jail because they were born with low platelets because of my antibodies crossing the placenta. My oldest son was stuck for 9 days until the pediatric hematologist broke him free and told the overly cautious doctors that we only needed to monitor his counts for 3-4 weeks until my antibodies worked their way out of his system.

My second son was stuck in the NICU for 5 days until the same doctor worked to get his release. By the time of the birth of my third son, we switched hospitals to the one where the ped. hematologist was on staff and he was released from the hospital after only 2 days in the NICU. That was awesome.

I'm really lucky that it all worked out as well as it did, frankly.

Hi Keli, as it appears that you are currently on-line, I need a quick opinion. How long should I let a nose bleed (not severe one) go before calling my hemo? Last week before I knew ITP was back I would totally ignore it as non-issue. Today count fell to two. I have new bruises and petech. I had to go get a unit of platelets.

I changed from Pred to dexamethazone, too. Just had first dose. No higher brain functioning at the moment.

Thanks,
Cindy

No longer then 15 minutes I was told be careful with that I've had that before and lost massive amounts you should get checked out at least

And I don't know about anyone else but platelet transfusions make my count worse so I would definitely go get checked at the er

Keli,

Good advice. I called just after my post. He said readmittance. They are doing two more units of platelets. Nosebleed is worse. Staying overnight.

Will see hemo in the morning.

Hoping to get back out of here tomorrow.

I hate the wait and see but it is necessary.

Hating Dexamethasone a LOT.

Has anyone taken it? I am on 20mg daily. Not expecting to sleep for a while.