Tapering Preds... what should I expect?

My son has been on long term relatively low dose pred since 2009. We are now adamant on taking him off completely and will not do any treatments until needed.

We know Prednisone helps keep up the platelets but just very recently we encountered a 264k count without upping the pred dosage. This gave us some hope for our chronic ITP 5 year old and we are hoping, praying for a remission in the near future.

The times his counts drop are when he catches a virus or infection, which, of course happens very often because steroids suppress his immune system. So my logic is i'll try to keep him as healthy as possible so he wont get sick and suffer from a lower count, but without preds.

Our method of tapering is this:
10 mg, 5 mgs alternate for 10 cycles(total of 20 days, this is where we are right now)
then 5 mgs for 10 days
then 5mg, 2.5 mgs for 10 cycles
then 2.5 mgs for 10 days... then bye bye preds.... hopefully.

What should we expect?

Your comments are most welcome.

As with most comments this is another one that needs to start by saying that every kid is different and every reaction is different. We seemed to be in a pretty similar situation with our daughter (9 years old, diagnosed 6 years ago). Prednisone was the only thing working and we eventually tapered her off and had mixed results. Platelets did go down, but we stayed away from putting her back on prednisone (as long as there was no bleeding) and let them go back up on their own. Our experience was that we had no specific affects (other than platelets on a rollercoaster) from stopping the prednisone. It certainly sounds like your doctor is taking a good amount of time to ween (that seems to change from doctor to doctor), but it sounds like you are on the right track.

A lot of the decisions come back to the "great debate" of treating symptoms (bleeding, bruising, etc), and not numbers.

I hope this helps.

Thanks for your reply.

A lot of the decisions come back to the "great debate" of treating symptoms (bleeding, bruising, etc), and not numbers
^ this is partly why we have been on preds, nose bleeds come so easily to my son. but we are adamant on this. we want it off.

And i think that immuno suppressant meds hinder the anti bodies from "re-learning" what a platelet is from what its not. Just my thoughts.

In terms of attitude/mood when not taking preds, what did you notice? Should i be lenient with him especially when it comes to his mood swings?

This is where an adult might be helpful because we can verbalize what tapering feels like, whereas a child cannot. A person can feel exhausted, depressed, achy, detatched, lethargic, weak, sleepy, the list goes on. It gets worse as the taper goes on, and going under 7.5 mg's is the hardest. Things start to get better a few weeks after the drug is stopped completely.

I wouldn't say that mood swings come into play while tapering, that mostly happens on the higher doses. During tapering, a person might cry more because they feel so miserable. To answer your question, yes, I would go easier on him. He won't understand why he feels that way or be able to control it.

Some people taper and do just fine without any withdrawal. Your son could be one of those, but just be alert for changes in his energy level and emotional state.

Does tapering Prednisone have a significant effect on platelets?

Our high of 264k less than 2 weeks ago has been short lived. We just had a test and its at a measley 32k.We are currently tapering very slowly, 5mg, 10mg alternating. Another nose bleed came, but it was controllable. I'm getting anxious again. Phew.

All I could offer is our personal experience with Prednison (which my 9 year old daughter has been on and off of for 4-5 years. Unfortunately, in my experience (and with others I have spoken to), there is no science with prednisone. Sometimes it works, sometimes it does not and there does not always seem to be a rhyme or reason as to why. One time when our daughter was tapering, and taking a very low dose, our doctor told us that she did not think that the prednisone was affecting the platelets. She did tell me however that it can sometimes strengthen the vascular system as to help try and prevent bleeding.

Unfortunately tapering prednisone is another example of how ITP can be confusing. I have spoken to multiple doctors about its affect on our daughter, but seem to get different answers.

Hang in there,

Jay

Thanks. The struggle never stops. Let's all be strong.