... originally treated with a high dose of prednisone (60 mg 2x/day) and IVIG infusion treatments. I had a bone marrow biopsy which led to internally bleeding into my backside for three days. This, in turn, led to hospitalization with round the clock blood and platelet infusions. I had the splenectomy and then was put on NPlate. Did the Rituxan treatment and then was put on Promacta in April 2009. Promacta seemed to do the trick. I was in remission (no meds, level checks every 3 mos) for roughly a year and a half. Caught pneumonia in February 2012 - retriggered the "virus". Promacta not doing the trick this time. I am back on IVIG therapy. This time around, I experienced wicked side effects (severe headache from front to base) and body stiffness starting at the neck (flu like but much more severe). Any body else experienced this?
Hello. I dont have your disease but I have been on all the drugs except the last one you mention. I remain on prednisone. Currently in another taper.
IVIG was an issue for me. I had the intense headache first time and the second round more problems like you mention. A third infusion was done, my disease continued to flare and we stopped. They did give me medications to reduce the effects prior to each infusion. These were huge infusions that took all day, over twelve hours.
I hear you with the frustration of finding the correct medications. Perhaps remission will come again. I have never been off the prednisone since the first day I became ill. I have polymyositis with interstatial lung disease. Just so you know.
Have you discussed this with your doctor? Mine was surprised as most people tolerate IVIG well. I know others with my disease who do fine with this. Just lucky, we are. Hang in there. Never stop searching. Karen
I am relieved to see that you have reported a history with ITP dating back to 2008. I am not glad that you, or I, or anyone else, have this condition but your longevity in treatment is encouraging to those of us just beginning the journey. I was diagnosed in Dec 2012 and have been down the same hospital treatment, bone marrow biopsy (w/o your complication, thankfully), platelet infusions, Rituxan and IVIG treatments and now, lab work and Nplate injections, weekly, since last Feb, 2013. I noticed that you were in remission on Promacta for over a year... Are you now on Nplate?
Hi smasten - did you end up getting your accessory splenules removed? Did your count improve after that? If so, how long did it take? Was it gradual, or were you still on IVIG etc until it did? My mom recently got her splenule removed after her ITP came back 4 months ago (after 25 years in remission). She tried nplate, but nothing seemed to be working. Even with IVIG, her counts were up and down on a daily basis. There seems to be less volatility in the counts after the splenules was removed (has been a week so far), but none of the docs know what to expect.
- Prednisone Information for Consumers
- Prednisone Information for Healthcare Professionals (includes dosage details)
- Side Effects of Prednisone (detailed)
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