More Pred or Rituxan? Help me decide.

I was diagnosed in Sept. '08. Since then, I've only had to treat twice with low-dose (never higher than 20 mg) prednisone. The first time, I took it for 8 months before I was able to taper off. Counts stayed safe for 4 years after that.

My count nosedived to 9 this past Sept. Again, I began taking 20 mg pred and am currently at 10 mg/day. This time, the count seems to be more volatile, so I'm unsure when I'll be able to stop med altogether. Thursday, my count was 38. Doc says he doesn't want me on pred for much longer and that he wants me to try Rituxan. Before deciding if I want to go along with his plan or not, I have questions for you:

1. How long is really too long on pred dosages as low as this? Are frequent, short-term courses at high doses more damaging than prolonged low doses or are they about the same risk?

2. I achieved four full years of very safe counts after the last 8-month pred treatment. From what I've read here, Rituxan would probably not give as good a result, and side effects are potentially much worse. And then there's the cost of it.

3. Given how leery I am of Rituxan, if you were me and decided to accept it, would you insist on the low-dose option? I have a feeling my doc isn't aware of those studies and will want use the standard dose.

I don't want to stay on pred, and I want Rituxan even less. Five years ago, I said I'd never go on pred. When I caved in on that, I then vowed, "Well okay ... But I'll never do the heavier duty stuff." Now here I am, having to make a hard decision again.

It's a tough decision for sure.

1. How long is really too long on pred dosages as low as this? Are frequent, short-term courses at high doses more damaging than prolonged low doses or are they about the same risk?

That is difficult to answer. Everyone is different and it can take a long time before long term side effects are noticed such as osteoporosis and cataracts. When I was in my 30's and took prolonged high doses, I only had short term side effects. Now that I am older than that and have been on 10 -20 mg's for the past 7 years, I am having more problems such as foot fractures, thin skin and severe muscle weakness.

2. I achieved four full years of very safe counts after the last 8-month pred treatment. From what I've read here, Rituxan would probably not give as good a result, and side effects are potentially much worse. And then there's the cost of it.

Rituxan can give a very good result if you are responsive to it. Most people get a year or more of remission. Most people have no side effects with Rituxan and get through the infusions easily. Some have side effects during treatment but those are carefully controlled. There are rare side effects that can be serious, but most patients who are otherwise healthy have no problems.

3. Given how leery I am of Rituxan, if you were me and decided to accept it, would you insist on the low-dose option? I have a feeling my doc isn't aware of those studies and will want use the standard dose.

If you prefer the lower dose, you could take print-outs of some articles and discuss it with your doctor.

Never say never! I said the same thing about Prednisone and will now be on it for the rest of my life. You never know what the future holds as far as other autoimmune disorders sneaking in that would cause you to have treatments that you do not necessarily want. As far as ITP, you have choices which can even include watch and wait.

I was in a similar situation in 2007 and i will tell you what my hema told me.....
There is no dose of prednisone that is really "safe", and the risks of both long and short term side effects are always there.

I was anxious about trying rituxan, but went ahead with it and and had a 4 1/2 year remission. It was very nice not to have to worry about ITP for all that time. I had some side effects during the infusion but had benedryl, hydrocortisone, ranitidine, with it and that all helped.

If i were you Id discuss the lower dose with your doctor and go with that if he will approve it.

It sounds like you are doing a good job researching your options but it's still so hard to pick. My son was on prednisone continuously for 16 years from age 8 to 24 except for 2 weeks when he was 14. He has Evan's Syndrome. We adjusted the dose to keep his Hgb at least 10. Most of the time he was on 5mg every other day. It worked well. I took him to several hematologists who all agreed with the treatment. His Hematologist felt continuous low alternate day doses were better than frequent high doses. He did develop gastritis at one point but no other obvious side effects. He relapsed at age 24 and received Rituxan with 4 1/2 years remission. He developed several medical problems which may or may not have had anything to do with the rituxan that all resolved. I can explain them in another time if you want. When he relapsed again in 2011 he did not respond as well to prednisone and received rituxan again March 2013. I don't remember if we discussed low dose rituxan but my son chose Dr. Bussel's protocol with 4 weekly treatments and 7 maintenance treatments over 2 years with the hope of 6 year remission. I think the psychological effect of all those years of steroids, blood tests and waiting for results got to him. Good luck whatever you choose. Joan

Thanks, everyone. I greatly appreciate your taking time to help me with this.
Just wish there were black and white answers, I'm sure you agree.

I've understandably been thinking about and researching this all weekend and am now even less convinced it's for me. It's very hard to believe that the risks and costs involved make it a better choice than staying on the low dose of pred or even just gradually tapering off that and going untreated unless serious bleeding starts. My below-10 counts are rare, and I've never had a serious bleeding episode at any count. Yes, I'm older (64), but otherwise in good shape. I just don't feel as nervous about doing nothing as I do about putting this harsh a chemical into my system.

Would you folks mind me asking a few extra questions?

1. Wouldn't the amount of steroid used to pretreat four Rituxan infusions amount to a much higher dosage than I would get in several months' worth of 5-20 mgs a day?

2. Can the osteoporosis risk of steroids be countered in the same way as osteoP for any other reason? Plenty of calcium intake and exercise?

3. I found reports from PubMed and Medscape about low-dose Rituxan, but they're older (most recent one is 2010) and not very large. Can someone point me in the direction of the most recent and perhaps larger studies? I want the big ammunition in case I can put aside my fear and agree to this.

I still haven't received a call from doc's office regarding insurance approval. I wouldn't be disappointed if they've forgotten about me, actually.

1. Wouldn't the amount of steroid used to pretreat four Rituxan infusions amount to a much higher dosage than I would get in several months' worth of 5-20 mgs a day?

I wasn't pretreated with Prednisone. I was pretreated with Solumedrol which did nothing for my counts. I am very responsive to Prednisone but after three weeks of Solumed, my counts were still below 10k. Were you told that you'd be pretreated with Prednisone? Most people are not.

2. Can the osteoporosis risk of steroids be countered in the same way as osteoP for any other reason? Plenty of calcium intake and exercise?

Of course exercise and Calcium can help, but may not prevent osteo if enough Prednisone is taken for a long time.


I haven't seen any recent articles about low dose Rituxan, but 2010 isn't that old.

This is just my opinion but, if you are so worried about rituxan and side effects then you might be better off with ypur plan of not treating if you have no symptoms or using prednisone as needed. For me i dont have that choice because i get bleeding symptoms under 17 k. Also, like Joan's son, i have Evan's syndrome and have been treated with rituxan for both itp and hemolytic anemia.

With rituxan, i wasnt pretreated with prednisone but then needed hydrocortisone because of becoming itchy during the infusion.

I take calcium and vitiman D since ive been on prednisone so much over the past 15 years. Hopefully it helps. I am 61 and do have osteoporosis. I take boniva too.

It takes a long time for those studies to be completed. Something from 2010 would be considered recent and im not sure whether or not there are any ongoing studies now.

I have so much to learn. This was my misunderstanding without actually knowing which specific drug is used for pretreatment. Plus, I assumed any drug within the class of "corticosteroid" conveys the same cumulative risk.
After my latest crash, I was given Solu-medrol as a quick boost before the oral pred could kick in. Within a week, I was at 199k. I've always been very responsive to steroids, which is another reason I'm reluctant about the "heavier" treatments.

Thanks to you all for talking this out with me. It helps more than I can say.

Solumedrol is methylprednisolone and is slightly stronger milligram for milligram than is prednisolone or prednisone. You are right that at high doses and if taken for a long time it would have the same effect on the bones as the other steroids. But if you were given it with Rituxan you'd only get it once a week presumably, if at all, many doctors don't give it, and then you'd be off the steroids altogether.

I have a muddled view with the choice you have been given because I don't like Rituxan because it only works with about 50% of patients and the other 50% are left with no good effect from it but immunosuppressed for a year. But steroids long term scare me and I think three months is plenty long enough on them, so to take them for years would not be on my, or my haematologist's for that, list of possible treatments.

I've also noticed that people with ITP seem to get very blase about the doses of pred thinking that 20 mg is a low dose and it isn't... 5 mg is a low dose.

Have you thought of trying other treatments? There are lots to look at?

Thanks, Ann. You've provided several pieces of the kind of information I'm looking for.

The Rituxan success rate doesn't seem promising. I've been reading that it works 2/3 of the time, but you say only 50%? A year of immunosuppression isn't a fair trade-off for the higher risk of failure. And I just read the recent article that says vaccines won't work for at least 6 months afterward. That would put me in the thick of flu season without the benefit of vaccine against it.

I've been on this round of pred since August 14, seven months so far.
(Since then, I've taken an average of 18 mg/day.) Thanks for clarifying that this isn't as "low" as I'd believed. Yet, there has been very few side effects - no increase in BP or blood sugar, no colds or other infections this winter. I've gained perhaps 5 lbs. around my torso and have a little body acne. Otherwise, I feel okay.

The nurse called me today saying she was a hair close to getting the insurance company approval and should know for sure by tomorrow. She was very displeased with me when I expressed my deep reluctance to go ahead. I scheduled an appointment with the MD for Thursday to talk more about it. I suspect he'll be pretty ticked, too. Not looking forward to that.

Other treatments? Yes, I know their names, and that what works for any one patient seems to be luck of the draw. But my goal is to get back to no treatment. I went for 4 years without it and maintained counts between 50 and 70. As long as I stay above 20, I'm fine with that.

Thought I'd add an update for the record.

My MD took my Rituxan refusal pretty well. I thought he might be angry, or even 'fire' me as an uncooperative patient. No problem there. He seemed slightly surprised but impressed at my understanding of the serious side effects. The disappointing part of the conversation was his mention of splenectomy as the next step. I looked him strongly in the eye and said, "Oh no... THAT will not happen." End of discussion. He agreed to let me stay on Pred a little longer, but ordered a bone density study to see if it was doing damage there.
Great news on that front! The results showed not only that there has been no additional loss from the Pred, but I've actually gained 5.3% in the lumbar and .3% in the hip since I've been on it.

I wrote a thank you note to the unhappy nurse to let her know her efforts to get insurance approval were appreciated. Can't hurt to play nice with a woman who just might be assigned to infuse me with some chemical in the future.

I'm glad that things seem to be working out for you. How are your counts? It's nice to have a doctor who is supportive of your decisions.

Thanks, Sandi.
My last count was 38 on 3/13. Due for the next one on 4/13.

Count done on Tuesday the 15th was 60. Pred dose was reduced to 10/5 mg alternating.
Hope it holds, so I don't have to go through another treatment argument.

Something odd happened, though. On 4/10, five days before this count, I had a day of the worst bleeding I've ever had. Not what I think of as "severe", but bad for me. Random bruising, heavy petechiae, oozy nosebleed that would not stop, and a few mouth blisters. The next day, the nosebleed stopped and no new signs appeared. And then the count of 60 was just days later.
Another time when notable bleeding signs appeared, my count had been in the 70s two weeks before and two weeks after the bleeding episode.

So my question is... Exactly how fast can a count change from 60s-70s to one in the danger zone below 10 where bleeding signs shouldn't be ignored? Can it change that much on a daily basis?

I've never done counts more often than weekly but I did once go from 377 to 1 in a week. I think that was my most dramatic change.

I can see counts dropping that much in a day, but then going right back up again would be odd.

I have had a drop similar to Ann's...360 down to 4 in a week. They went back up but slowly and only with treatment in response to prednisone.

My counts are yoyoing just now, I know they are.. I had a mouth blood blister the other day, but today is fine and I'm guessing back up again. It's the way I was before diagnosis but didn't know then what was going on. I'll ignore it for now, and treat with Nplate again if my count goes consistently low. For now, ignorance is bliss!

There is just one certainty I've come to know about ITP. There are absolutely no certainties about anything related to it.

• No certainty about what causes or worsens it.
• No certainty about which count produces symptoms.
• No certainty about the effectiveness of any treatment ... Either from patient to patient or even from episode to episode in the same patient.
• No certainty that any individual MD knows how to deal with it.

In the weeks prior to the day I bled so much, I had begun taking OTC Pepcid to counteract the awful heartburn caused by the Pred. It worked great... I only took it once a day on random days as needed. Then came the "bloody Thursday". The new med suddenly occurred to me, so I googled about it. Ta-dah ... Famotidine, ranitidine, and cimetidine all have shown the capacity to plunge even non-ITPers platelets into oblivion. It seems to be a short term event, normalizing after 4-5 days. All I can do is wonder... Because there are no certainties!
Argghhhhhh

Funny how everyone reacts differently. I take Pepcid every day with no problems.

Different people respond differently or not at all to various treatments.

If it were me, I'd do the roids and hit the gym (it's what I've done in the past).

My doctor told me that Rituxin works great...assuming that you survive the first treatment. I went with the roids and take Octagam. Haven't had the roids in a while.

Seriously your doctor told you:
...assuming that you survive the first treatment.

Sinfoniarc wrote: My doctor told me that Rituxin works great...assuming that you survive the first treatment.

Wow. If there were truth to that, no one would use Rituxan. Death during first treatment would not be worth the risk for platelets.

Besides that, it doesn't always work well or even at all in 50% or so of people.

Like Ann said, it doesn't work at all for some people. And some have a serum sickness reaction, but that would be a few weeks after a treatment, maybe the first and maybe not. So it does seem weird what the doctor said, about 'surviving the first treatment'.
Erica

When I did Rituxan I had a reaction on my first infusion. I started to wheeze/ whistle when I was breathing being I'm asthmatic I called the nurse over. My lungs were clear and the noise was coming from the throat (was slightly closing). Stopped the infusion gave me a drug (benadryl not sure??). Than they started the infusion back up. I did not have any more problems with that infusion or the other 3 infusions.

Maybe that is what the doctor is talking about?

My doctor told me that Rituxin works great...assuming that you survive the first treatment.

Probably, but usually those symptoms are easily controlled. I don't think any of us were warned that we might not survive.

Sinfoniarc wrote: My doctor told me that Rituxin works great...assuming that you survive the first treatment.

I can't presume to interpret for Sinfoniarc, and if he returns here he should correct me. But it seems to me the statement contains opinions from two people, the doctor and himself. That is, the last part is his own editorial statement, not the doctor's.

Sandi wrote: Probably, but usually those symptoms are easily controlled. I don't think any of us were warned that we might not survive.

That is why I am big at telling people to research and just do not follow the doctor blindly. Sometimes I just want to shake the doctors and say Wake up! and stop Scaring the crap out of patients.

I will never forget the nightmares I had when I was first diagnosed!

My wife just had Rituxan last week on Thursday. It was uneventful she was a little under the weather the following day but other than that it was a breeze.

Believe it or not we have been getting some of the best first hand accounts about drug reactions from the nurses @ the infusion centers. Find the one or two that has been there and seen that, and ask them questions about what to expect.

We've had some really great nurses over our short little journey so far, as well as some who are just learning. You'll learn to pick up on the ones who know their stuff.