Lupus? ITP?

[16ITP]

I was diagnosed with ITP on August 4th. I was given 3 dosages of IVIG through August. I started steroids yesterday, 150 mg/4 days. I got tested for lupus because my joints hurt and I crack a lot. He thinks it's just ITP but I'm so scared! Prednisone is the steroid i'm on. No bad reactions yet. He also wants me to change to a birth control that makes me not bleed. I need it because i'm at risk every time I'm menstruating. Has anyone else been through similar?

[jaywitter1978]

I had a Platelet count of 4 in August, was given platelets and 4 days of steroids. On day 4 I was at 360. Two days later my count was 1. I was readmitted, given two 2 bags of IVIG. I was at 55 when I was discharged, 360 at one week out, 206 at two weeks out. I will find out what I am three weeks out tomorrow. They have me on 75 mg of Prednisone daily for twenty eight days, then they want to do a slow taper. I have been on it for three weeks now and have had about enough. I can't sleep, all I want to do is eat, and I am absolutely miserable. They are telling me if I am at 30 or higher after the taper I can forego further medication unless my numbers drop.

[wjoyful in reply to jaywitter1978]

I know what you mean when you say your sick of steroids. My platelets sit at 26 to 28 and I've been on steroids for 4 months. I told them I want off. They say I should have been on a higher dose than 50 mg but I barely tolerated that. I'm on 5 mg now and they say they will ween me off so we can see where I land. I'll cross my fingers for you and you cross yours for me. Take care

[HOLCOTT]

Hi there, all sounds stressy, and that's a lot of steroid, hope you start to come off soon. What's your platelet count? The only thing I have in common is the birth control, made a big difference to me....also traneximic acid to further reduce bleeding. I hope things will level out for you soon , take care

[tartan_paint]

You never mentioned your count. To begin with my platelets were as low as 20, gave me steroids as cheapest option, worked but I hated them as made me feel funny. Thankfully 2nd dose of steroids never worked and my platelets dropped again. Put me on revolade 50mg pill a day, no side effects, platelets stable at 60-120, only thing is the drug is expensive, running into thousands a month so he only gives me a 6 week supply and then I need to get blood tests again etc... Much better than steroids though, never want to go near them again, made me feel awful... Sorry I have not been through the other things to give help, just the platelet side of things... All the best.

[ItsRalphy]

Poor you! Your situation sounds very stressful! My intro to Itp was nowhere near as stressful as I was diagnosed with a level 50-70 so thankfully have not yet needed treatment.

I did, however, have the test for lupus. I was told that they check the blood samples and need to find the indicator in 3 consecutive tests... I came back positive, positive, negative so the last test was a nail-biter!

Also, because of the massive monthly blood loss, I started taking birth control pill to decrease the blood loss. So I'm on cilest which makes my flow more manageable. Over 2-3 years I also managed to get my iron levels back to an acceptable level using sodium feredetate prescription. (The original standard issue iron tablets prescribed never worked for me.)

The other test for possible low platelet causes I had was the poop test for H pylori bacteria which also came back negative.

Some fellow sufferers also have the bone marrow test but not in my case.

I really do hope your lupus tests come back negative and that your Itp gets under control. It can be a worry when you're first diagnosed and events feel out of control. I have found that this site and the people on here invaluable and it's always nice to know your not the only one ... Itp is quite rare and non-sufferers don't really get it.

Good luck for your Itp journey. Fingers crossed for you!