Prednisone/taper/counts/refractory?

I need some advice and would appreciate some of you experienced ITPers giving me your thoughts...positive or negative.

My history: Diagnosed with ITP at 16. Did Prednisone, IVIG, Dex. Had good response to the prednisone, but when I would taper off, counts dropped and had a splenectomy because that was the standard of treatment then. How I regret that. Over the years I have had 3 or 4 relapses, usually following a fever, but they never lasted for long, about a couple months and I recovered with short doses of prednisone.

Now to the most recent episode, after 10 years of high counts (now I am age 45), I had a relapse of ITP about a year ago. I got sick with a nasty virus...sore throat, fever for 3 days. About two weeks later I noticed the bruising & petechiae and knew my counts were low, down to about 25K. I followed up with my old hemo who I hadn't seen in 7 years. I started on prednisone 60 mg and counts went up. I didn't care for his office staff and it was a challenge getting results to my blood tests so I changed hemos. The one I have been seeing for about the last 8 months is a very highly rated hemo, the lab is state of the art and all of my results are online within a couple hours.

Now, getting to the point, I am fortunate that I respond to prednisone, however I won't agree to a super high dose anymore like I did in the past because my body can't tolerate it and I have had an arrhythmia and prednisone makes my heart race. So being that I won't take a higher dose than 60 mg initially, but taper to 40 mg rather quickly, my counts don't rise as fast as they have in the past. Anyway, my counts have been up and down for the last year...25K, 153K, 44K, 71K, 264K, 50K, 83K, down to 38K up to 352K and back down to 153K at last count. I know most would say those are great counts, but they usually drop down when I taper below 20 mg of prednisone, but I think that they problem is that this hemo wants me off the prednisone so fast and she has played with my dose so much. I have been up and down bouncing back and forth with dosage from 30 mg to 10 mg back up to 20 mg back down, etc. Also, I have been sick twice in the last 6 months and both times my counts dropped again so then she wants me to up the dose and cut it down again in a couple weeks. Basically, she just wants me off the prednisone. (Not to mention she doesn't get the tapering slowly part.) She says that since my counts drop below 20 mg of prednisone it means that I am becoming refractory to it, but I disagree. I think because she has played with my dose so much, my body hasn't had the opportunity to even out. She wants me to take rituxin, but I don't want to. I am not someone who handles drugs well in general. I would rather deal with the effects of the low dose of prednisone than the unknown effects of something stronger. I don't really see where any of the other treatments have been proven to be effective. I am not convinced some of these other treatments are beneficial and I am concerned about the long term effects. I am not in a crisis and I am not a drug taker and avoid them at all costs. I say, what the heck is the big deal, not that I want to take prednisone, but it does work. Also, my insurance sucks and I can't afford to try a more expensive therapy that might not work and cause me to miss time at work and leave me with lots of medical bills. The doctor is basically saying that I need a back up plan if my platelets drop again and I am feeling pressured. Can someone shed a light on this? I thought to be considered refractory means that you do not respond at all? Am I wrong about this?

Also, I have extremely low ferritin (last count was 9), but I am not anemic. My hematocrit and hemoglobin are within normal range. The doctor says I should be doing iv iron and is convinced it would help my platelets. Any opinions on this? Has anyone had iv iron and seen it positively effect their platelets?

I would appreciate your feedback.

Thanks,

Erin

That's an interesting story. Quite a plight.
Take a look at user 'julia'.
pdsa.org/discussion-group/search.html?searchuser=julia&exactname=1&searchdate=all&order=inc&childforums=1&limitstart=0

There is a lot there so I'll give you a nutshell. Overtime, she lost response to steroids. Went to Azathioprine / Immuron. Started at 150mg but only needed 50mg to sustain a count of 275. After 3 years, she went into remission.

How does that sound to you?

Erin:
From what you've said, I don't think you are refractory. If the dose is adjusted up and down quickly like that, counts will be all over the place. Are you asking if staying on low dose Prednisone indefinitely would be a good idea?

As for the ferritin, I've had low ferritin and my doctor would not do anything about it unless I became anemic. I had symptoms from the low ferritn...RLS, and was miserable from not being able to sleep for two years (dIdn't realize it was because of the ferritin until I found out it was low and did some research). She still refused to do anything to raise the ferritin. I decided to take some iron on my own. It raised the ferritin and the RLS stopped within two weeks. I have never heard that IV iron will help to raise platelet counts. Have you done any research on that?

Hi Erin,
I just wanted to comment on the IV iron infusions and platelets. Last year I had low ferritin (4) as well as low HGB and hematocrit. I underwent 10 IV infusions of Ferrlecit (sodium ferric gluconate) to treat my anemia. Those treatments did not raise my platelets (boy I wish), and that seems strange that your doctor is interested in doing such a treatment hoping it will raise your counts. Certainly do some searching for research on the topic, but anecdotally I can tell you that it had no effect on mine. It did help with my iron stores quite a bit, and I've been managing my anemia with oral iron for the last year. HGB values around 13 for quite a while, and my ferritin rebounded to 22. I haven't had it checked lately, but the treatments definitely helped with my anemia.

From hearing about the strange dosage management of your Prednisone, you might want to find another doctor and get a second opinion on treatment options. Having a high pressure doctor is never a good thing, and you have managed to get some really nice, high counts on the steroids. I agree with you on not throwing in the towel on Prednisone just yet, especially if you like managing things with it. I spent a lot of my life managing count drops with steroids, and I could often take just a single 10mg pill after being sick to pop my counts up enough to avoid symptoms. I did this on my own without a hematologist (not recommended, lol!), but it's your body and you can work with a doctor to try to experiment with lower doses overall. People here have great advice on decreasing Prednisone very slowly over a long period to avoid drastic changes and crashes. Anything above 30K with no symptoms is good, and I only see one count in your list that is barely below 30K! Good luck.

Thank you for confirming what I already feel. I know that long term usage of prednisone is not great, but I know people who have been on it for other reasons for years at a time. I would much rather stay on the prednisone that go another route. I am just not ready to do something else. It would be different if I never responded to the prednisone. And as I stated, I don't handle drugs well in general. There are certain drugs for which I can take only a child dose and experience side effects. I don't know if it's genetic or what. That includes antibiotics.

I have tried researching iv iron and other than it increasing RBCs, I have yet to find anything confirming it's benefits for platelets.

I've been on Prednisone since 2004 for Lupus, from 5 mg's to 15 mg's. So far I have had three foot fractures, osteopenia, am pre-diabetic (not over-weight), and have very thin skin. I have three dogs and even the slightest touch of their nails rips my skin open...my arms are scarred. I'm 54 years old btw. I was willing to take the risk but am now paying the price and it does come. It's only going to get worse with time. I didn't feel that I had a choice due to inflammation that nothing else would control, but I wouldn't have done it for ITP. You get to a point where your adrenals are shot and then you can never get off of it.

Thanks for sharing. Like I said, I appreciate the positive and negative feedback. I feel for you Sandi.

There was something else I thought of and maybe this should go on another forum, I don't know, but as I stated I had my spleen out when I was 16. I am 45 now and about 2 1/2 years ago while having an MRI, I found out I have 2 accessory spleens. This was before I had a relapse of ITP, I was actually thrilled because I always regretted having my spleen out. My parents made the decision and I know that was pretty much the standard of treatment back then and I don't blame them. But I always prayed for a new spleen. I know it sounds crazy, but I thought it was funny that I had 2 splenules. I have no intention of doing anything about them. I figure they are there for a reason. I asked my doctor if she thought this may be why I am having issues, but she said it was not likely. Does anyone here have any accessory spleens that they know about? I would be interested in hearing from you!

I haven't really seen any accessory spleens here lately, but there have been quite a few over the years. It's not uncommon. They can also grow back from splenic cells. Removing them rarely resolves ITP from what I've seen here, but it did once or twice.