XP: prednisone questions (long, sorry!)

Hi everyone,

I hope you don't mind that I also posted this on the treatment board and pregnancy board, so if you see it more than once, feel free to ignore it. My question sort of touches on a few different topics so I wanted to get people's input from various boards.

I haven't posted on here in ages since I was first diagnosed with ITP about three years ago. I've been really fortunate in my ITP journey with my counts generally ranging from 50-80 and I have never had any symptoms so my hematologist has never thought that I needed to be treated. I just had labs done today and my count was 55. A month ago it was 61 and 2 months before that it was 63, so it has gone down a bit but not that much.

Well, now I am pregnant (33 weeks tomorrow!) and I am very grateful that my ITP has not been a problem during my pregnancy thus far. That being said, I am getting closer to my due date so we are looking at starting treatment soon to get my platelet up closer to delivery. My hematologist says that a count of 50 or above is safe as far as he is concerned, as long as I stay asymptomatic, but the anesthesiologists at the hospital where I am delivering require 80-100 for an epidural or spinal anesthesia, depending on which doctor is on call (some will do it with 80, others require 100). So, we are going to start treating soon to try to get my count up so that I have the option of an epidural, and more importantly, so that if I end up needing a c-section for any reason, I won't have to go under general anesthesia for it.

So - I'm finally getting to my question here. (Thanks for reading so far already!) If you have been on prednisone, and I know it varies from person to person, how long does it take to start working? And how much did it raise your counts? My next appointment with the hematologist isn't until 3 weeks from now when I will be 36 weeks pregnant and I am nervous that my count won't be high enough by the time I deliver, either because I won't have been on it long enough or because it just won't get my count above 100. What are your thoughts? Thanks in advance everyone, and I'm sorry this is soooo looooong!

Liz

Liz:

Everything depends on whether or not you respond to Prednisone. I do, and my counts can go from 5 to 200 in a week on 40 mg's. That is a good response. Some people do not get any response, or they get a minimal response.

My advise would be to talk to your doctor about a trial a month before delivery. Try 20 mg's for a few days and see if you get a response. Good luck!

Sandi is right - it's different for everyone. I think my counts go up near 100 from 10 within 24 hrs of starting prednisone (say 30mg). It's hard to know when you'll go into labour so it can be hard to plan. In a pinch, you could have IVIg to raise counts fast.

I'm one of those who is unresponsive to pred. I started with 100mg/day for 7 days and taper 5m/week and absolutely NO platelet response

Praying you'll respond to pred cuz dealing with the likely side effects for months without ITP improvement is discouraging.

I respond pretty quickly to prednisone, within a day or two, and I think that's been the case with most people - if the dose is high enough to get a response then the response is pretty quick. It might take some experimenting to find out what dose works for you (if any, for some it just doesn't work).
Erica

Hey Liz,

When I had my baby last December, I did a 4 day round of decadron right around by 39 week point. I think it was 40 mg, but it may have been 20mg. Anyway, when I went in for my regular appointment, my platelets were up over 100, so we decided to induce before they dropped again. I wound up having a regular epidural and c-section, and everything went great. No problems with bleeding, and the anesthesiologists weren't scared to treat me because my numbers were normal. I was also told if my numbers were lower than the 80-100 range I would have to be knocked out completely if I needed a c-section. NO WAY i was going to miss my little one being born!

I wish I could have gone into labor naturally, but it all worked out. Sounds like you know your options. Go with what you are comfortable with.

Blessings!

I'm another one who responds to prednisone quickly--from very low to safe within 1-3 days. I had an epidural for my splenectomy, and I think they did did some sort of intravenous blast to make sure my platelets were high for that.