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thunder_dog88
@thunder_dog88

Posts: 13
Joined: Aug 14, 2018

APS SLE with ITP

Posted by @thunder_dog88, Tue, Aug 14 12:48pm

Does anyone else have this? I have red spots all over my feet and legs, hands and arms, now showing up on face. I went to emergancy room but they could not help me. My Rhumy put me on Planquenil, but the spots are getting worse and they burn. I feel like I'm getting dumber, too. Lol. Not funny! I have been to so many doctors, im on my fourth Rhumy. I requested getting Theraputic plasma exchange but all the doctors say no, it is not for me. But my condition is getting worse, fast. I'm stuck on couch unable to walk or stand much, going out tires me out so much that my husband and kids run my errands for me. Three years ago, I was a hearty class 'A' truck driver, tanker. Now, I cannot work at all, I get weaker everyday! It's like im a 92 year old and need to take daily naps, sit with feet up or they burn. I wish I could go to Mayo Clinic and find a doctor who knows how to treat this. I feel lost. Any advice or tips? Ps..im 53 yr female

REPLY

Hello @thunder_dog88 — Welcome to Connect. I'm sorry you haven't been able to find any answers for your symptoms. Are you able to ask your rheumatologist for a referral to a specialist who may be able to diagnose the problem?

Do you also have sores inside and around the mouth? The only reason I ask is I did a search and found similar symptoms that mention hand, foot, and mouth disease.

WebMD.com – Facts About Hand-Foot-and-Mouth Disease
https://www.webmd.com/children/guide/hand-foot-mouth-disease#1

I would definitely seek treatment as soon as possible. If your doctor is not able to figure it out, I would try to get a referral or second opinion from another doctor. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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Hi @thunder_dog88,
Another resource that might be helpful for you is Google Scholar (https://scholar.google.com). You can find a lot of medical research and articles and you can sort the search results by date using the links at the left.

I did a search of Google Scholar with the phrase SLE treatment options and it found the following articles:
https://scholar.google.com/scholar?as_ylo=2018&q=sle+treatment+options&hl=en&as_sdt=0,24

Hope you find some answers soon.

John

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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Hi! I just called Mayo Clinic number you forwarded to me. The guy there gave me a phone number to give to my Rhumy in N.J. To call and ask for wisdom. A physician refurral service. I left a message for Rhumy and pray he is not too arrogant to call. Some of these doctors get so busy and sometimes drop patients who's case is too difficult. Healthcare is a business. I will look up the other links you gave me. Thank you, again! 🙂

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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You are welcome! Hoping your Rhumy follows up. Good luck!

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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Well….my Rhumy called me back and 'dumped' me as a patient. Told me to go find another Rhumy that can better treat me, they give up. I think they got angry I gave them the Mayo Clinic Referring Physician Service number to help with my case because I'm in pain and having a reaction to the Planquenil. They told me to off the med, and find another doctor. Great. Proof once again, the business of healthcare, whom doctors can select low hanging fruit and 'dump' patients who have rare diseases. I feel like the bottom of my world just fell out. 🙁

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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I would be tempted to call the state and report the doctor or at least find out what your rights as a patient are. You mentioned New Jersey. If that's where you live here is a website the may help – If you scroll down you can see the name of the patient advocate who may be able to help.
https://www.njconsumeraffairs.gov/staff

John

@thunder_dog88

Hi! Thank you, I will check it out. My problem is I live too far away from good doctors. And the ones I go to cannot explain the red spots and the burning pain. (Robert Wood Johnson Hospital in NJ, about 5 hours away). It's like they become stupid, and don't seek to get in touch with an expert to find out what it is, why, and what I can do about it. My primary local doctor is clueless, and tried to find a Hemotologist with immunology backround but couldn't. Then found out, he was required to stay 'in network' and not go outside that network no matter what. I have private insurance and can go where I want to..but can't find a doctor to not quit on me or say 'I dont know', I've had 9 doctors look at my feet and legs, and hands and arms saying 'I dont know'. But I tested positive for APS and SLE, high liver count, and high blood count. Low platlets is the benchmark to having CAPS which would qualify me for TPE (Theraputic plasma exchange). Why do I have 'high' blood counts yet have purpura (big and small spots) and webs under skin? That's a symptom of low platlets not high ones. Unless my platlets are not functioning right and my marrow just keeps pumping out more. They did confirm I have too much blood in my system. Lol. I could feed 'TWO' vampires. But seriously, I feel I was sent home to die. At 53 years old. And yes, everyday it gets worse, the burning pain, new spots showing up on my face, hands, legs. No, no sores. Occasionally I get hard blisters on my fingers, and cuts or scrapes take a long time to heal. Thank you for answering my question!

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Hi. I posted another question with a pic of my legs. They burn extra hard tonight. I'm finding it hard to get comfortable in bed. I can't let my feet touch each other, they burn and sting where the blanket touches them. Maybe someone on here has seen these type of spots and can give me some wisdom. I've been off the Plaquenil for two days, and the spots are still intensifying. I had already gone to the emergency room a few days ago, they said they didn't know what spots are and couldn't give me treatment for the pain. Someone must know what I have, what these things are. Is it ITP or CAPS? If so..doesnt that mean TPE is a cure? I cannot walk into an aphorisis center and demand plasma exchange…I need a doctor to confirm things and walk me thru stuff. That's the rub…find a dam doctor who cares. *frustrated, sorry

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