I have been fighting with ITP since January 2010 when it was discovered that my platelets were at 1 (1,000). They are up to 48000 last time I got checked and the doctors seem content with that. They had gone back up to 177K at one point. I have seen two doctors - a hematologist and a rheumatologist in addition to my primary care physician. P
They have both done extensive bloodwork and my ANA comes back positive (but right on the cusp of negative), hematocrit is on the lower side, MPV on the higher side but all close to the borders of OK. Rheumatologist said ITP could be the first manifestation of Lupus but as of now it's just the ITP that is my sole autoimmune disorder.
Has anyone else heard of this sort of situation or been through it themselves? I didnt see an ITP board so I figured that I would start here. Thanks...
The following user gives a hug of support to drc1:
Way back in 1989 I had ITP (initial platelet count of 4k) for about 3 years with a negative ANA at the time. I fought through it with many rounds of high dose steroids, gamma-globulin infusions, etc. etc. At the time I was not dx'd with anything other than immune mediated thrombocytopenia. My ITP did finally resolve. I continued to feel tired all the time, achy, but nothing specific, and still no positive bloodwork for anything. I'm leaving out a lot of the details... but then I was dx'd with hypothyroidsim in 1997. It took 15 years and lots of other symptoms coming and going before my ANA did finally turn positive, and it was a low positive at that. Because of the totality of the symptoms, and because of further antibody testing (my anti-RO was positive), I received the SLE diagnosis. Remember that you must meet 4 of the 11 criteria (posted in the sticky posts at the top of the lupus board) before a dx is usually made.
It can be very frustrating, I know. I don't know how old you are or what your financial/job situation is like, but here's something to think about. Once you have a diagnosis like SLE, you are going to have a much harder time getting life insurance, and if for some reason you have to switch health care plans, pre-existing conditions are a definite problem. I think sometimes drs are cautious to give such weighty diagnoses because they do carry ramifications. Hang in there. My advice (for what it's worth!) is to document everything and to keep asking questions and informing yourself. If you feel like you're not being taken seriously, then ask for another opinion if you can get one. This disease can be a tricky one to diagnose. Find a dr. you trust.
Best of luck to you as you search for answers. I'd be happy to talk more about the ITP with you if you'd like.
drc1, hi & welcome. Yes, I've read that people can have only ITP without an accompanying autoimmune. In one of my books, the author says that only 20% of poeple who present with ITP go on to develop SLE... but you'd certainly want to discuss that with your own specialists.
I *think* ITP can accompany antiphospholipid syndrome as well. Have you seen the sticky post on APS? The stickies are permanent info posts at the top of the thread list. Did your rheumatologist test you for APS?
Also, I believe ITP can also be a sign of other conditions outside of rheumatology, like cirrhosis, etc.
It must be hard to find extensive info on ITP, if there are no books out there for patients. You could try identifying conditions in which ITP can exist, look for library books on those conditions, then use the indices at the back to look for the specific pages that discuss ITP.
Are you seeing both your hematologist & rheumatologist regularly?
I wish I had something more useful to offer. Let us know how you're doing, OK? Sending you warm wishes, Vee
Thanks for your kind words. I am a 35 year old male, smoke free for 8 years and that will not change. Light/rare drinker altho in my younger days I liked a drink or 10. I was a marketing executive until a month ago when I was unexpectedly eliminated from my position along with 7 others in my department. Luckily I still have health coverage for a couple months and after that I will switch to my wife's plan.
Luckily for now it's just ITP and even that seems to be stable. Although my platelets are very low. I guess the positive ANA is what makes me nervous as I know it can be a sign of other autoimmune problems. My hema and rheuma don't seem to see anything urgent, they just want to wait and see with checkups every couple months.
I feel OK I guess...I was traveling the country for work and wondering what the bruises I was getting were, and the tiny red spots were all over my legs and I felt fine then, meanwhile my platelets were at 1,000. The doctor said I could have bled out internally with even the smallest fall or bump. On my last trip before I got diagnosed, someone was in the aisle plane seat I had wanted, but I didn't want to ask them to switch so I begrudglingly took the window seat. Well, a suitcase fell out of the overhead compartment and hit them on the head, hard. That would have killed me with a platelet count of 1,000. That still boggles my mind. So I must have a guardian angel up there somewhere.
Hopefully that guardian angel will get me through whatever this is, and hopefully it's nothing to worry about. I am going to read the stickies above now, and see if they help. Thank you!
drc1, I just read your most recent & can appreciate why your positive ANA is worrying you. Do you know if ITP *alone* can cause a positive ANA? Have your drs. commented on that?
BUT I've read & have been told that a LOW positive ANA can have BENIGN reasons, such as a passing VIRUS or family tendency. And interestingly, I read that the most common cause for platelets crashing is a recent VIRUS. (Hmmmmm---another mention of VIRUS.) Could your drs. not be worried terribly because they suspect a passing virus has caused BOTH cusp-ANA and scarily decreased platelets? You could ask that point-blank.
You said you'll have ongoing hematology & rheumatology follow-ups, which is smart & prudent in my book. Don't want to sound sexist, but my two main men behaved so differently. My father put on a face for his GP, always said "I feel fine!" In contrast, my husband follows up. So I'm really glad you're looking after yourself wisely. Don't ever cease.
Re: your wondering about possible lupus, yes, do read the stickies. They provide an excellent list of what to watch for. If you want to know even more, you could visit your library or bookstore. Hopefully you'll never develop any lupus-like signs/symptoms.
That was an awful account about luggage falling on your plane seatmate. I'm glad you were in a safe seat. And I hope your ITP resolves without ever presaging anything more. But now you know how to find us all here, so any time you want to converse, you'll find us. Best wishes, Vee
Last edited by VeeJ; 11-01-2010 at 04:28 PM.