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ITP as a Symptom Of Something Else?

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13 years 4 months ago #9834 by bpritikin
ITP as a Symptom Of Something Else? was created by bpritikin
Hi everyone,

Ever since my daughter was diagnosed with ITP 2 years ago, her doctors think she could have "secondary ITP". In her case, her ITP is possibly a symptom of another rheumatological illness, such as SLE (lupus). She is 9 years old with other vague symptoms (occasional headaches, leg cramps that come and go, etc.). Her rheumatologist hasn't given her an official diagnosis yet because she hasn't met all of the criteria for one of these illnesses. She has positive ANA (last time we checked it was 1:320, and we've seen higher titers in the past). In the past her bloodwork has shown some positive antiphospholipid antibodies....but some have been positive and have moved to negative over time. Her recent testing shows borderline anti lupus coagulent, and we need to test for this again in a few weeks to double check the result.

Anyways, is anyone else in this stage of "limbo" like we are? It is so frustrating to not know where my daughter's ITP is heading, and whether or not it is a precursor for another illness.

Also, my daughter's skin is very itchy. Does anyone else notice this as a symptom? Her recent platelet counts (last week) were 18,000, and I wonder if this is a symptom of ITP at lower counts, or perhaps another systemic type symptom we can't explain.

So far we are watching and waiting. No treatments yet, but we may be headed in that direction if her counts continue to fall.

Thanks for listening!

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13 years 4 months ago #9835 by Angelalogin
Replied by Angelalogin on topic Re:ITP as a Symptom Of Something Else?
Hi bpritikin!

I have no clue about lupus or the testing done for such...my son had a BMB and Im assuming they checked him for lupus or other things!?
The symptoms you mention I guess is what struck a chord with me because my son has the same things, it could be a coincedence or medicine related, I don't know. He has occasional headaches, leg aches (always in the legs) and itchy skin. However he is on prednisone, and was on a very high dose of it.
The thing thats been bothering me as of late is I have this sinking gut feeling, that this ITP is being caused by something else...call it mother's intuition, something is nagging at me, an underlying infection perhaps!?? I dunno.
The lupus questions, I know there are some very knowledgeable people on here so Ill turn it over cuz Im clueless in Canada....but we're here for you regardless of the problem!!!!
Angela

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13 years 3 months ago #9837 by bpritikin
Replied by bpritikin on topic Re:ITP as a Symptom Of Something Else?
Angela,
My daughter's other symptoms (not ITP) and positive ANA were present years before the ITP showed up. She had a bone marrow aspiration/biopsy this past May just to be sure we didn't miss anything.

Interesting that your son has similar symptoms, but it could be side effects to the pred. When my daughter has leg cramps we have to give her over the counter pain relief to make her feel better. There is no swelling where her cramps are, so the doctors can't figure it out.

If you haven't already, you may want to see a rheumatologist for further screening.

Thanks for responding!

Barb

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13 years 3 months ago #9842 by mghd
Replied by mghd on topic Re:ITP as a Symptom Of Something Else?
My 15 year old daughter was diagnosed with ITP 4 1/2 years ago. While she tested negative for lupus, she has had some of the symptoms you mentioned. While she was growing up, she would often have leg cramps that would require tylenol before she would feel better -- although it has been quite some time since she's experienced that. And, she had a bout of excema (also an autoimmune disorder) that caused very itchy skin. An Rx cream immediately took care of the excema and it hasn't come back. I know, it's a full time job trying to get to the bottom of all of the wierd symptoms that can accompany ITP!!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 3 months ago #9858 by Sandi
Replied by Sandi on topic Re:ITP as a Symptom Of Something Else?
BP:

I went through the Lupus waiting game after being diagnosed with ITP. I'm not a child, but it's a similar experience. My ANA was the same as your daughter's - 1:320 and I also had APS antibodies on and off over the years. I have the Anticardiolipin Antibodies. From the time my elevated ANA was discovered until the time I was diagnosed was almost two years. It can take much longer than that for some people as Lupus can develop very slowly. I had ITP 8 years before I had any symptoms or blood work that pointed to Lupus.

I am not telling you that your daughter will be diagnosed with Lupus....sometimes it takes certain triggers. In the meantime, there isn't anything you can do about the limbo - it's definitely just a time to monitor and wait. You can try to keep her out of the sun and use sunscreen religiously, that will help. No tanning at all! Sulfa antibiotics are also known to trigger Lupus, so try to keep her off of those as well and ask for substitutes if possible.

Leg cramps can be a result of low potassium - has she had that checked lately?

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13 years 3 months ago #9863 by bpritikin
Replied by bpritikin on topic Re:ITP as a Symptom Of Something Else?
Hi Sandi:
I am glad you responded---your case is really interesting. My daughter's positive ANA was identified when she was about 2 years old, and the leg cramps started back then as well. I remember our doctor told us it was probably growing pains. The ITP didn't show up until she was 7, and she is now 9 years old. She had positive anticardiolipin Antibodies at one point, and now it is negative.

We use sunscreen religiously, but her rheumatologist cleared her to go to summer daycamp the last 2 years, which I was always concerned about, but we let her do it. I am not sure this is the best move, but we also want her to live as normal a life as possible until we know what her diagnosis is. Very good advice about the antibiotics and I will have to remember that.

If you don't mind my asking, what were your symptoms/lab results that helped your doctors confirm a Lupus diagnosis?

Thank you, Sandi.

Barb

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13 years 3 months ago #9864 by tacmom
Replied by tacmom on topic Re:ITP as a Symptom Of Something Else?
Hi, I just wanted to chime in since my daughter also has/is going through a similiar experience. She is 12, but was diagnosed with ITP when she was 8. About 6 months after diagnosis, her hematologist started running tests and she had a positive ANA with a high titer. She has never had APS as far as I know. Caitlin has enough of the indicators in her labs to be labelled "undifferentiated connective tissue disorder", but not enough to get the Lupus diagnosis. She has ITP, neutropenia (low white blood cells), positive ANA, and a positive dsdna. Her rheumatologist ran about 40 different labs to test for different things and said that she may or may not develop Lupus. She has also had fluctuations with her ANA titers, but I think that's normal. Caitlin really hasn't had any of the physical symptoms like joint pain. She occasionally has joint pain, but she is very, very active and we contribute her pain to this. Headaches are extrememly common with her and she gets cold sores every now and then. Those are probably the only physical symptoms we can pinpoint. Her rheumatologist has discussed the possibility of putting her on Plaquenil, but we have not done this yet. (Drs have ruled out CVID and something else, but they have looked several times into ALPS because she has some of the "cellular formations" of that, whatever that means.)

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 3 months ago #9891 by Sandi
Replied by Sandi on topic Re:ITP as a Symptom Of Something Else?
Barb:

Apparently, ITP was the first symptom, but of course I didn't know that then. I'd have to say that the first physical symptom was feeling flu-like for a few days a couple times a month. Then I began to have symmetrical joint pain that would move around - elbows for a few weeks, then shoulders, then hips, etc. I developed an intolerance to cold weather and feel feverish/sick any time the temp is below 74. I also had very stiff and painful muscles, and fatigue. I also developed neuropathy in arms and legs that comes and goes.

The labs went bad slowly. First the ANA, then C3 and C4 were low. SED rate was elevated, APS Antibodies and finally, the dsDNA was elevated and that was the clincher. Oddly, I've never had any rashes.

I made the mistake of tanning before my daughter's wedding, and the dsDNA was elevated for the first time right after that. No coincidence; UVA and UVB can really trigger Lupus. I was headed in that direction anyway, but I sure sped things up by doing that. I can't stress enough how important sunscreen is.

Good luck with your daughter and if you have more questions, ask away!

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13 years 3 months ago #9894 by ktonooka
Replied by ktonooka on topic Re:ITP as a Symptom Of Something Else?
Hi Barb,

My daughter Jordan fits into this catagory also. She is 15 and has had ITP for the last year and a half. This past summer, she had a battery of blood tests and has been further diagnosed with Sjogrens syndrome. She has positive SSA and SSA antibodies, and a positive ANA, can't quite remember what the last count was. She also has a low white cell count. We are currently trying Cellcept, have tried Imuran (slightly worked but was toxic to her), and have been off and on Prednisone (which actually raises her counts the best). We have some autoimmune issues in our family, so I guess this is all not a total surprise.
Jordan's count seems to hang out in the teens or twenties without treatment. She plays tennis and dances so we treat for now. She doesn't have the dry eyes but has had a plugged salivary gland sore in her mouth that the doctor says was typical for Sjogrens. It has since gone away without doing anything. She occasionally has some joint pain but not enough to even take anything for it.

Karen
mom to Jordan

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13 years 3 months ago #9896 by lornahalbert
Replied by lornahalbert on topic Re:ITP as a Symptom Of Something Else?
My hema in Colorado never said anything about Lupus. When I traveled to Louisiana for the summer, the hema there wanted me to check in with a rheumatologist because of my ANA results (the same results from my tests in CO). The wait list was too long so I couldn't see anyone while I was there. When I came back, my CO hema said he really didn't think lupus was a possibility. Dr's opinions can be so different! Anyway, when I go back to Louisiana next summer, I will get it checked out if the doctor recommends it.

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12 years 8 months ago #16831 by Momma Jo
Replied by Momma Jo on topic Re: ITP as a Symptom Of Something Else?
My daughter's first bout with ITP was at three years old. We were told it was an acute case. She then had another bout at seven. Now she is seventeen and we have dealt with a count of 6,000. Steriods have brought her counts up rapidly each time but it's what she seems to deal with the rest of the time that doesn't make any sense to me. She has bouts with extreme fatigue, joint pain, muscle pain, dizzy spells, and headaches. She has mitral valve prolapse as well. She doesn't seem to have typical symptoms of chronic ITP as her recovery numbers are above 150,000 but her doctor says it is classified as chronic. I, like many of you just want to know what we are dealing with going forward. She is looking at colleges now and how far she venture from home will be dependent on her health. Has anyone faced similar conditions? Has anyone gotten any answers that might help?

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12 years 7 months ago #17224 by brittany
Replied by brittany on topic Re: ITP as a Symptom Of Something Else?
i was diagnosed with ITP during my pregnancy 2yrs ago...
so we went on our 1st family vaca to the beach. and i come home with a bumpy rash on my hands/wrists and inner knees- nose bleeds on the ride home (and i always get leg pains- especially at night- i run up&down steps to relieve the nagging pains then as soon as i lay back down its unbarable)
me platelets were 80 2weeks ago i get them checked again and have hemo appt tuesday.

Your post made me think of the symptoms i have (dr never says much about my leg pains and fatique) But im bringing all these points back up to him again (also have been having problems with my vision past few months- had to get my contacts changed twice and still cant see right--- makes me wonder if all this is related)

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