Rapid Taper - Prednisone

Hi. I'm brand new to this forum and must say for the first time in 3 months I don't feel alone! I just started Rituxan infusions and my doctor's office gave me this site address. Anyway... I'm on a "rapid taper" from 80 to 0 of Prednisone. After a week of 40 doctor put me on 3 days of 20, 3 days of 10, etc. Today I started 10. I feel horrible to say the least. Kinda scared too. I guess the hope is that the Rituxan will replace the need for steroids? Not sure. I've been adamant about getting off this horrible drug. My platelets were 14 on Mon. I started Rituxan Tuesday - didn't get the Benydryl (had a reaction so they gave me a steroid); platelets 31 yesterday. I'm not sure if the Rituxan is what boosted the platelets a bit or the steroid they gave me to counter my reaction? I didn't think to ask.

If anyone would like to share experiences with rapid tapering, I would appreciate hearing them. Thank you.

Lin

Hi Lin. I posted in the other thread (promacta) before seeing this one. I was on Prednisone for one and a half months, so I guess I had a rapid taper too. I was at 100 daily and within 18 days was off it. I also felt like something someone scrapes off the bottom of their shoe, if you know what I mean! It was terrible. but worth it in the long run. Prednisone did absolutly nothing for my counts, while on it my platelet count even dropped to 1! I don't think it was the Rituxan that brought up your counts, it takes a couple of weeks for it to work, it had to have been the steriods. I have been on NPlate for 6 weeks now and it's bringing my counts up, even to high! I've been up to 377 on it. That's to high for NPlate. I got my 2nd infusion of Rituxan today. No reaction this time..whew! I gotta work later today! And it only took about 3 &1/2 hours this time, that was a relief too.
Looking forward to seeing you around.

My taper wasn't as rapid as yours (dropped 10mg each week).. I've got one more week, and then I'm done! FEW! I got EVERY side effect and MORE on this stupid drug.. so I was very adamant about getting off as well.. But I didn't have any real reactions getting off... just relief! Okay.. that.. and I would feel kinda sucky for the first two days after a drop.. but that would pass after the third. So I suppose if I had been dropping every three days, I would have felt continually bad...hmmmm...

Good luck with Rituxan! My plan is to get off the Pred fully, and then just wait and see what happens... cause I can't afford anything else, and frankly, I'm done with the drugs!

Let us know how it goes!

Kate

Lin:

Rituxan doesn't replace the need for steroids. They are two entirely different drugs that work in different ways. Some people may respond to Prednisone and not Rituxan or vice versa.

It's hard to say what caused the increase in your counts...could just be normal ups and downs in fluctuation. I had Solumedrol with Rituxan too and it didn't raise my counts, even though I respond very well to Prednisone. Rituxan usually takes a few weeks to work, usually between 3 and 12 weeks. Some people have had a response well after the 12 weeks, so you never know.

Good luck - I hope Rituxan works for you!

I'm mentally in a place that I want to refuse steroids period. I was admitted to the hospital last February in complete renal failure - creatin was 13 (I was just dehydrated and the kidneys are fine now), and stayed 8 days. I had a bowel obstruction, pancreatitis and gall stones. At one point they said I had cirrohsis (sorry I'm probably not spelling that correctly) but then changed the diagnosis to ITP. I was put on steroids and sent home with 180 pills and told to take 6 per day. I was not under the care of a hemotologist. Due to a clerical error in the size of my gall stones (2 cm - not 2 mm) I needed to schedule surgery. It was in the surgeons office while talking about the drugs I was on that talk of steroids ensued. I had one pill left at that point. The surgeon looked horrified and said "you can't just stop taking them - call your primary care doctor TODAY and get more". My PCP didn't want to be the one to keep me on steroids (she had no involvement with my hospitalization as she is in a different town) but she did order 100 more pills and send me to a hemotologist. He actually said "someone dropped the ball on this" - no one was monitoring my steroid use. I had to have the surgery - so they used steroids during it since I could not taper fast enough.

Until recently I thought the steroids were prescribed for the pancreatitis not ITP. I didn't give that diagnosis much thought quite honestly because I wasn't aware of the ramifications. I was more focused on gall bladder surgery. HA! Now that I am seeing a hemotologist everything is clear - like a slap in the face. Everything has happened so fast since trying to get off this drug. My platelets have dropped to 6. I had IVIg - didn't work. Now Rituxan. What's next? I've already decided they can't have my spleen.

I don't mean to sound like a baby or a control freak. I guess I'm just in an anger stage. I am determined to be steroid free. I appreciate your response. I feel very fortunate to have found this forum. Lin

You'll be steroid free. I don't know of anyone who has been on them forever....not high doses anyway. Some people are on 5 mg's to 10 mg's per day, but that is a low dose. I've been on 5 or 10 mg's for five years.

I'm glad you found out that you can't stop steroids abruptly. That would have been bad!

Wow, what a nightmare! Good thing it worked out! How about the pancreas problem, bowel obstruction, and gall stones? You got those taken care of? The hospital discharged you with steriods and didn't tell you to call your doctor for follow up? Crazy! Good thing we have brains huh!? Well, mistakes to happen, but man......when it happens to you...ugh! Praying all is working out for you.

Hi - thanks for the support. Yes, the bowel obstruction was taken care of in the hospital, the pancreatitis is under control (I no longer drink any alcohol at all - miss my wine I can tell ya (lol) but that's a small price to pay) and my gall bladder was removed with no complications. As for all the mistakes - I even had two sets of discharge instructions - one didn't have the right name on it... there is no sense in going backwards. It is what it is and now I'm just moving forward. I'm grateful I didn't just end up stop taking the steroids now that I know that could have been bad. I like my hematologist a lot and am hopeful we'll get this figured out. However, based on what I've been through, I've learned I need to pay a lot closer attention to my own case, do my own research and not just "go along" with whatever, ya know? Finding this site is such a wealth of information. I'm grateful to all that have responded and reading the stories of people here and the q & a - this is awesome.

Tomorrow is blood test - this is my third day of just 10 mg of Prednisone. Tomorrow I start 5 mg for three days. My body hurts, my face is flushed (hot flashes on steroids - lol) and exhausted has new meaning but I'm not complaining - it's manageable and the goal is in site. Thanks again. Lin