Has anyone been diagnosed with ITP? my husband was diagnosed in Jan 2013, has had steroids, IVIG, and chemo. He has not responded well at all. His platelet count goes up after IVIG but slowly declines days after. Chemo makes it hard for him to even function. Can anyone give some advice/ thanks
I haven't, but it must be very hard for both of you. I almost started chemo last year, but plaquenil is controlling my clinical symptoms, so chemo wasn't an option anymore.
I'm a complete newbie here, but maybe someone can give you some advice.
I'm sorry to hear he is feeling so rough...hugs to you both xx
There have been a few posters who have questioned about ITP. I'm not sure if this link will work, but here's what a "Search" on the site for "Idiopathic Thrombocytopenic Purpura" produces
Notice also on that page the "sticky" thread List of 63 Auto-Immune Diseases
Click around on some of those threads, and maybe gain more understanding. Each case is different, so don't go scaring yourself with what some folks say on the internet. I've had trouble with my platelet count, but never serious. I do monthly IVIG infusions (which basically kills the day, thank you very much), but I do them for my CVID, which is probably related to my lupus, or vice versa, depending upon which doc I talk to... lol - anyway, I seldom have issues any more with the platelets, so I'm not much good for the advice part, other than to have you keep asking questions of the docs. If you don't understand something they say, ask them again. Keep after them. btw, if they decide that the lupus causes the condition, then they'd change the name to ATP, for "Autoimmune..."
I have not been diagnosed with SLE (just saw a rheumy for the first time) but I did develop ITP (and possibly hemolytic anemia based on a positive coombs test) about 20 years ago. I had a pretty severe case, my platelet count was down to 2K and my hemoglobin was at about an 80. Steroids marginally bumped up my platelets to about 10K so they gave me gammaglobulin a couple of times. Within weeks my counts plummetted so they gave me a splenectomy. I was one of the lucky 60% that it works well for - I haven't had low platelet numbers once over the last 20 years (knock wood). I know splenectomies are not given as often for those with SLE, but it worked well for me 20 years ago when there were fewer treatment options. I hope your husband finds the treatment option that works well for him soon.
This is an ITP forum. Perhaps some folks here can share their experiences or advice with you. http://pdsa.org/forum-sp-534/index.html Best wishes.