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New here - ITP, possible Lupus

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9 years 4 months ago #54702 by jodster
New here - ITP, possible Lupus was created by jodster
Hello! My name is Jody. I'm a 42 (creeping up on 43) year old female. I was diagnosed with ITP about 3 years ago, but found out later that I had low platelet counts show up on blood tests for 10 years prior to that without anybody telling me.

Since I was diagnosed, my platelets had never gone below 40K...until now that is. Back in January, I had an all time high count since my diagnosis of 80K. I was so excited but it was short lived. 3 months later I was down to 37K so I began monthly testing. 37K went to 34K and as of yesterday I'm down to 24K.

Additionally, my hematologist retired and I have a new one. My initial hematologist found I had anti-platelet antibodies, diagnosed me with ITP and did no further testing. My new hematologist thought this was odd and tested me for other auto immune diseases. I had a positive ANA result with 1:320 titer with a pattern suggesting lupus. The hematologist said she thinks that's really what's causing my platelet destruction. I couldn't get in to see a rheumatologist for over a month, so I'm still waiting for that appointment. I see there is a Lupus board on here but I purposefully posted here because (1) I have no official diagnosis and (2) my husband is convinced my positive ANA results is just ITP showing up on that test. One question I have for all of you is whether anybody has had a positive ANA result, what the titer and pattern was, and did it end up being a Lupus diagnosis? I do not have the most common Lupus symptoms.

I will see my hematologist tomorrow and we'll go over my new, lower-than-ever platelet count results. I want to prepare myself. Do your hematologists treat at 24K? Is there a magic number your hematologists use to decide to wait and continue testing vs. treat? I believe I have a petechiae rash on my back, if that makes a difference. I may even have a little on my arms but it's harder to tell there since my arms are a little tan. My gums are bleeding when I brush my teeth and I had a bloody nose yesterday (though not really bad, just unusual for me in summer).

Tomorrow I will know more about the platelet count and hopefully by month's end I'll know more about whether I have Lupus or not. In the meantime, I really just want to prepare myself and get an idea what to expect!

Thanks so much!
  • 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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9 years 4 months ago - 9 years 4 months ago #54705 by Sandi
Replied by Sandi on topic New here - ITP, possible Lupus
Jodster:

Hello - welcome!

I'll tackle your questions in order. How low were the platelet counts for the past 10 years? Below normal isn't always cause for concern unless you had symptoms, so there probably wasn't any harm done by not informing you. People can have counts in the 70's and be perfectly fine and that might not alarm some doctors. Others might overreact. It all depends on the doctor.

I don't find it odd that your initial Hemo did the anti-platelet antibody test and stopped there. Most doctors are pretty specific in their specialty and stick to the disorder protocol. That was all my Hemo did too, most don't even do that. Generally, only a blood smear is needed to diagnose ITP unless there are other odd physical symptoms or something else weird shows up on the CBC.

I found out that I also had an ANA of 1:320 (Speckled) about 10 years after I was diagnosed with ITP. I had physical symptoms at that point and had seen a Rheumatologist who blew me off. I saw my Hemo a few days later and told him about it. He ordered the ANA and referred me to a different Rheumatologist when the results came back.

A positive ANA is not 'ITP showing up in a test'. They are two distinctly different things. Some people with ITP do have an elevated ANA and do not have Lupus. The ANA is just an indication of inflammation that can be common with autoimmune disorders. By itself, it means nothing. In order to get a Lupus diagnosis, you'd have to meet four of eleven criteria:


1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

Without physical symptoms, you will not get a diagnosis. The Rheumatologist will probably do more extensive labs unless he feels that the lack of symptoms don't warrant it. That is a very good thing. Since you do have two of the criteria though, I'd consider that a red flag for a possible future diagnosis. That does not mean it will happen. It takes triggers to cause Lupus and there are some things you can do to possibly prevent it. Avoid UV rays as much as possible, avoid a lot of stress and avoid sulfa antibiotics. Those are known Lupus triggers. Illness can also be a trigger but you can't always avoid that. Some autoimmune disorders develop slowly...years. I had physical symptoms and an elevated ANA but still didn't get diagnosed for a year and a half because labs didn't support it.

As far as treatment for ITP, there is no magic number for treatment. Many doctors will treat in the 20's and some will only treat if symptoms warrant it. Treatments are not fun and come with a whole slew of side effects. Prednisone is usually the first treatment. Many people feel just fine before treating and once they start, that sure changes.

Did I answer all of your questions?
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9 years 4 months ago #54707 by jodster
Replied by jodster on topic New here - ITP, possible Lupus
Thank you!

I do actually have a few other indicators from that list. I have a history of having canker sores (they've come and gone my whole life, I always thought it seemed related to stress..I have one now). I also have a high resting heart rate (sinus tachycardia). I have an echo cardiogram scheduled for next Thursday to see if there's inflammation in any areas of my heart. Inflammation could cause the rapid resting heart rate.

I'm also starting to get weird rashes. Right now I think my rash on my back and arms is petechiae and due to the low platelets. Earlier this spring, though, I had some weird things happen when I was sitting outside on the bleachers at track meets. Oddly, it wasn't my exposed skin so much. The sun was beating on my thighs (that were covered in blue jeans) and I had flaming red skin where the sun was hitting my clothing. It lasted about 2 days then went away. It didn't hurt, didn't itch, just looked completely red. It looked like a really bad sunburn but wasn't. This happened on two different occasions this spring. Anything like that ever happen to anybody else? The word Lupus had never came up at that point so I had thought it was a weird ITP symptom. I still don't know and forgot to tell my hematologist about it at my last appt.
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9 years 4 months ago #54708 by eklein
Replied by eklein on topic New here - ITP, possible Lupus
Rashes that are not petechiae are not an ITP symptom. My doctor always checked my ankles for petchiae, I think it's the most common place. I don't get them anywhere at any count.

I do get sun rashes from lupus and sometimes through thin clothes but never through denim. And they always itch. Mine come up about 2 hours after sun exposure.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: jodster
  • 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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9 years 4 months ago - 9 years 4 months ago #54709 by Sandi
Replied by Sandi on topic New here - ITP, possible Lupus
Hard to say about the canker sores. Could be related, may not be related. I have a friend who gets frequent canker sores but does not have Lupus. They can be viral. As far as I know, Lupus sores are white ulcers...I've had them a few times. Any symptom can be Lupus-related though if a person has it.

I don't really get rashes in the sun, but I do get livedo reticularis on arms and legs when directly exposed to the sun or cold temperatures. Livedo is a red or purple lace-like discoloration. It's usually associated with a blood clotting disorder called APS which can go along with Lupus. I've never heard of a sun-related rash that goes through jeans either. Most Lupus rashes are a direct result of the sun or UV exposure.

As for petechiae, it can appear anywhere, but most see it on legs. I was odd and always had it on my hands and chest. I also had nasty bruises, but usually only if counts were below 10k.

Your symptoms are iffy as far as being Lupus-related. I guess the tests will show one way or another. A negative now does not mean that Lupus will never happen, just like being cancer-free doesn't mean that cancer will never happen.

These were the symptoms and labs that I had when diagnosed. I had the symptoms for a while and was monitored every four months. It took a while until the labs became elevated.

Constant muscle pain - felt like a combination of the flu and working out too hard.
Joint pain - moved around bilaterally, elbows, hips, etc
Felt flu-like for days on end a few times a month
Extreme fatigue
Paresthesis - skin burned when exposed to heat or cold temperatures
Numbness in fingers when exposed to heat or cold

Elevated ANA, Postitive dsDNA, Elevated C3 and C4, Elevated SED Rate, and Elevated Anticardiolipin Antibodies (APS) (also prior history of ITP).

Shortly after diagnosis I developed Neuropathy in arms and legs.
The following user(s) said Thank You: jodster
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9 years 4 months ago #54710 by jodster
Replied by jodster on topic New here - ITP, possible Lupus
I'd love for them to say it isn't Lupus, that's for sure! I can't even stand having ITP. I am quite adventurous by nature and it drives me nuts having to say "I probably shouldn't do that" to all kinds of activities I want to do for fear of getting injured.

Can I ask, does anybody else overthink how dangerous a car accident could be? That's been my one biggest fear since being diagnosed with ITP. I have a far commute to work (at least an hour each way) and that's what usually worries me most about the low platelets.
  • 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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9 years 4 months ago #54711 by Sandi
Replied by Sandi on topic New here - ITP, possible Lupus
The only time I ever worried was when I had to drive on ice or snow. I probably should have worried, but I didn't let myself think about it much.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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9 years 4 months ago - 9 years 4 months ago #54712 by midwest6708
Replied by midwest6708 on topic New here - ITP, possible Lupus
My doctor calls up the "bad car accident" scenario all the time when he wants me to take ITP more seriously than I do. I tell him I could die in a car accident with or without low platelets, so don't bully me, doc. :lol: The only count he's ever insisted on treating is 10 or below.

However, if I had a long daily commute like you, I'd definitely get a medic alert bracelet and would put something on it like "chronic low platelets" instead of "ITP". I've seen people here on the board say that even medical professionals such as ER interns and paramedics often don't know what "ITP" means.
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9 years 4 months ago #54714 by eklein
Replied by eklein on topic New here - ITP, possible Lupus
I had the muscle pain and joint pain but mine wasn't bilateral, I know it was supposed to be. It would move around one side one day and one side another day. I would wake up with big pain and then it would fade in a few hours. I also had neuropathy. That was just once though for a month. Normally I just have the sun sensitivity and occasionally flu-like.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • LaurWinn
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  • Diagnosed with Lupus in 1995 at age of 17. Diagnosed with ITP in 1998 at age of 20. ITP currently stable post treatment in 2014.
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9 years 4 months ago #54715 by LaurWinn
Replied by LaurWinn on topic New here - ITP, possible Lupus
Hi there,

I am a lurker - I read this forum frequently, but don't post too often. However, this topic speaks to me since I was diagnosed with Lupus when I was 17 years old (symptoms were frequent canker sores, pain and swelling in both hands and fingers, elevated ds-DNA, positive ANA, high sed rate, etc.).

At the age of 20, I developed ITP with a platelet count of 10K. Was treated with Prednisone and weaned over about 2 months time. 6 months later I developed TTP, was treated with Solu-Medrol (later changed to Prednisone) and plasmapheresis, and weaned off Prednisone about a year later. Both my hematologist and rheumatologist both strongly suspected my ITP/TTP was secondary to Lupus.

For the next 5 years, I had normal-ish platelet counts requiring no treatment. The platelets dropped to around 90K shortly thereafter and stayed in the 80-90k range for many years, again requiring no treatment. During this time, I was taken off Plaquenil (a drug used to treat Lupus) and had my son who is now 7 years old.

3 years ago, my ITP returned worse than before. I had no response to Prednisone or Dexamethasone, so I treated with Rituxan. I received a remission of just under a year, before platelets dropped again to 6K. I attempted another Rituxan course, but had an allergic reaction half-way through the 3rd (of 4) infusions. Needless to say, I did not finish the Rituxan course, however, I did have a response from the Rituxan I did get, with fairly normal counts going on 2 years now.

Ironically, I've never had joint pain/swelling or other Lupus symptoms since my initial diagnosis. My lupus manifestion seems to be the ITP.

I am currently taking no medications - my "Lupus" laboratory studies are pretty good right now (except my sed rate which is always very high) and I don't plan to treat my ITP unless my platelet count dips below 30K. I get a CBC monthly and see my hematologist every 6 months. I see the rheumatologist every 6 months as well. I neither worry about the ITP or Lupus nor do I allow it to effect the way I live my life. Before I had my son, I used to dwell on every ache, pain, or bruise and now I guess I've just gotten to the point where I don't worry about it anymore. If I see an increase in bruises, I'll get another CBC. I do worry about the increased inflammation (the high sed rate) but my rheumatologist consistently says that they don't "treat" a high sed rate, they treat any symptoms that may develop from the high sed rate.

So, hang in there! You're not alone, if you do happen to get that Lupus diagnosis. These boards are very helpful and the community is very supportive.

~Lauren
  • 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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9 years 4 months ago #54716 by Sandi
Replied by Sandi on topic New here - ITP, possible Lupus
Lauren:

Thanks for sharing your story! I'm glad that Lupus is under control now and you don't have any complications. TTP is very scary and I'm glad you got through that okay. I hope you continue to have remission.