Hi Crystal,
Here's an article that I've posted before, written by a couple of hematologists with a busy practice. I think you may find if reassuring, as far as being around to watch your babies grow up (which may seem like a long way away right now, but it's amazing how all the sudden it happens that they're all grown up!).
And, there are a lot of options out there. You may want to check out the Natural Treatments section as well, for some alternative views on treatments, as some of us have had success with that, without the unpleasant or dangerous side effects that can come with most of the other treatments. The symptoms you're currently describing are very likely from your Pred taper. Not sure how fast you're tapering, but going more gradually may lessen the symptoms. If you're breastfeeding or postpartem, you're likely more sensitive to the symptoms as well, with hormones changing. You might check out a thread in that section called, "HOW TO ATTENUATE SIDE EFFECTS OR ALLERGIC REACTION TO MEDICATIONS", too. You can use this method to lessen the side effects of Pred.
Here's the article:
Can I die from ITP?
By James. N George, M.D., Oklahoma City, George R. Buchanan, M.D., Dallas
www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf
The question is often asked, directly or implicitly, whether ITP can be, or is often, fatal? Such concerns are expressed, not only by ITP patients and/or their parents, but also by physicians who may or may not be familiar with the condition. The concerns are inevitable during the initial days after discovery of a very low platelet count, when dangerous diseases such as acute leukemia are also considered. So, in this brief essay, we will try to address what is obviously a very important question.
Yes, ITP can potentially be fatal. However, that could be said for virtually every disease, including many which are usually not very serious. Extremely rare, but fatal, complications can occur from strep throats, the common cold (which may lead to pneumonia), chickenpox, or what seems to be a mild case of indigestion. But, to put things in perspective, ITP, although troublesome, and occasionally, a truly serious problem, is rarely fatal. The fear of serious and even fatal hemorrhage, far exceeds its actual occurrence. This, of course, is due to the otherwise good health of most patients with ITP, and the fact that their platelets, though few in number, are younger and stickier than platelets of normal people. This is due to the rapid platelet destruction in ITP, and the increased production of new platelets, by the bone marrow. The younger platelets are more effective in protecting hemorrhage in the brain and elsewhere, even following minor injuries.
The most common cause of death in children with ITP is intercranial hemorrhage (bleeding in the brain). We lack accurate scientific information about how often that occurs and whether any specific treatment prevents it. The best study, performed in the United Kingdom, by Professor lilleyman and his colleagues, suggest that it happens in about 1 in 800 children with ITP. Since slightly more than half of children with intercranial hemorrhage due to ITP recover, the actual death rate is probably about 1 in 2,000. This would translate into approximately two deaths annually, due to childhood ITP in the United States, and 1 every other year in the U.K. So, fortunately, fatal bleeding in ITP is extremely rare. Since splenectomy is so infrequently performed in children with ITP, it’s most feared complication is fatal septecemia, or blood poisoning, and is also now very rare. One important job that we as physicians interested in ITP have, is to educate patients and parents, as well as our physician colleagues, about this reassuringly low incidence of death, due to ITP or it’s treatment.
The situation may be somewhat different in adults, who are more likely to have other conditions that contribute to fatal bleeding, whose disease is longstanding, or who suffer from fatal consequences of long-term treatment of ITP. Hence, some adults die ‘with’ ITP, rather than necessarily ‘from’ ITP. Good data are hard to come by, but it seems that death due to hemorrhage in adults with ITP is, like in children, extremely rare. Many hematologists have never experienced fatal ITP in their practice.
So, what does all of this mean? We can’t say, ‘don’t worry’ about ITP. Clearly, as the recent survey conducted in the UK showed, ITP causes a great deal of anxiety, and bleeding problems resulting from ITP, as well as the side effects of steroids and other treatments, can be difficult. However, most people with ITP fully recover or eventually improve with few or no bleeding problems. ITP rarely caused life-threatening or fatal bleeding complications. Therefore, the fear of hemorrhage in ITP should not influence patients and their physicians, to pursue toxic, arduous and costly forms of treatment. As we often tell our ITP patients and their families, “If you have to have a blood disease, ITP is a lot better than most of the alternatives!”
april
Topic Author
They are always so helpful and uplifting. If anyone hasn't read "Excellent Advice" in the Newly Diagnosed section, they really should. It is also by Steve, (although typed by Sandi) It's great to read anytime you are feeling overwhelmed.