Pred Stop Working?

Hi All,

I'm just wondering if anyone has been in a situation where pred suddenly stops working?
I've been on and off pred for the past 4 years (since I was diagnoised with ITP) and it has always been effective in pushing my platelets back up.
However, about 4 weeks ago I caught the flu and my platelets dropped quite significantly. I am all recovered from the flu and have been on high doses of pred but it is not helping my count at all. Even IVIG which also worked previously is having minimal impact.
I'm kind of running out of options.

I'm just wondering if anyone else has had a similar experience? Could this be a temporary thing due to me getting sick or is it likely that pred has permanently stopped working for me?

Hi, I can understand the worry but it could well be that you just had flue and the body is still fighting that and taking all your time to recover from it which can vary in length - without wishing to worry you more.

I have had a weird year too because back on Boxing Day, I went in with a count of 8 and pred pushed it up to 410 and lasted whilst May. I went in over night on the count of 4 and was allowed home on pred which pushed it up to 200+. But when they tapered it down to the lowere end it dropped again and was taking in and received IVIG for five days. That pushed it up to 25, was allowed home (thankfully to do course I was on) or the following week for it to drop back down to 5. I was given another course of 60mg of pred and the following weeks rituximab. My platelet count rose before they started the treatment but they continued with it and it kept within norm. That was July. Since finishing the steroids of that time my platlets have kept up - but have they? For I have had blood blisters every week though this week I haven't but was stiff yesterday and woke up to tell tale bruising today. though look ordinary to a non ITP'er and it only because of yesterday stiffness. So who knows what is happening to me...

I think it may be because of the flue. It may feel like you are running out of options tho as my consultant told me, I haven't had everything yet. Though I don't have insurance questions as am in England. But there is more than IVIG. I have had a splenectomy so they can't do that to me again. I been told - next time I be on NPlate. Have a read around on the treatment pages and hopefully that will help you to feel a little bit more reassured that you aren't running out of options. May be they will give another course of IVIG once you're recovered from the flue an it will push it back up again?

There is hope and I hope you will find hope through reading the treatment pages and hanging around here and reading other posts. I hope you feel better about treatment options soon

It could be either. Sometimes a treatment stops working because the ITP antibodies have changed. For example, you may have had antibodies that cause destruction before, but are now producing antibodies that hinder platelet production. Antibodies can come and go and can vary, which is why treating autoimmune disorders can be tricky.

Hopefully, it's just a temporary thing.

Thank you Rhiannon, I've just always taken for granted that there's a drug of last resort that will get my platlets up. As much as I didn't like taking it, it was a safety net and I never even considered this kind of situation.

Sandi: Shouldn't pred supress the production of antibodies in general? Or is that not how it works? Yes, I'm still hoping it might just randomly start working again but I'm not holding my breath!

In theory, yes. But if that were true, then Prednisone would work for everyone. I really wish there were more articles about all of that. I have to try to piece things together based on what info is available and try to make sense of it. We know that some people don't respond to anything, but they have had luck with the TPO's that stimulate production. Supposedly, there are antibodies that inhibit megakaryocytes from making platelets. If those antibodies responded to Prednisone, then why would anyone have to use the TPO's? Too many questions, not enough answers.

The pred stopped working for me. It had always worked in the past but didn't work this time after trying it for two months.

Prednisone quit working for me about five years ago. Fortunately since then I've treated on two separate occasions with Rituxan but have had no dips below 10,000 so have not had to try the Prednisone again.


Debbie