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Rheumatologist says I have APS & hematologist says I don't.

Posted by mrsruby @mrsruby, Jun 20 8:51am

Because of a stroke last year, I was advised to see a rheumatologist and a hematologist to find out the cause of the stroke and the lab findings. One says I have every indication of APS and the other is not convinced through a year of testing that I do have it. Currently I am on an aspirin a day and hematologist wants to put me on Warfarin and I'm not even sure I have APS. Anyone else confused with their diagnosis?

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artemis1886 | @artemis1886 | Jun 22 6:14pm
In reply to @swalex "@artemis1886 A sedimentation rate (ESR, or "sed rate") above 135 mm/hr is indeed very high. In..." + (show)
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@artemis1886
A sedimentation rate (ESR, or "sed rate") above 135 mm/hr is indeed very high. In most adults, ESR is typically under 20–30 mm/hr (depending on age and sex), and values over 100 mm/hr should prompt doctors to look carefully for significant inflammation, infection, autoimmune disease.
What was your CRP at the same time?

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@swalex I have lupus sojourns Hashimotos and MCTD. Elders Danlos 3. I was diagnosed in January and the rheumatologist has not put me on anything I feel like crude and lost a lot of weight was 220 and now below 150 and nauseated. It’s hard for me to eat without throwing up. My dna-ds is high also.

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swalex | @swalex | Jun 22 11:26pm
In reply to @artemis1886 "@swalex I have lupus sojourns Hashimotos and MCTD. Elders Danlos 3. I was diagnosed in January..." + (show)
Profile picture for artemis1886 @artemis1886

@swalex I have lupus sojourns Hashimotos and MCTD. Elders Danlos 3. I was diagnosed in January and the rheumatologist has not put me on anything I feel like crude and lost a lot of weight was 220 and now below 150 and nauseated. It’s hard for me to eat without throwing up. My dna-ds is high also.

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@artemis1886
High anti-double-stranded DNA antibody levels indicate the presence of autoantibodies that mistakenly target your body's own genetic material. Elevated anti-dsDNA levels can sometimes be associated with lupus activity, but only a doctor can interpret these results by including other laboratory findings.
If your rheumatologist hasn't started treatment and you're continuing to decline, I would strongly encourage you to contact them again as soon as possible and seek a second opinion.

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reets70 | @reets70 | Jun 23 4:55am

Yes, I was told 20 years ago that I had APS, but last year a hematologist said I don’t. I had a blood clot last year and while I was hospitalized all the blood tests did not show APS. I was prescribed Plaquenel and Methotrexate 20 years ago and still on Plaquenel today. I’m 86 years old and have no idea which diagnosis is correct.

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mrsruby | @mrsruby | Jun 23 8:10am
In reply to @reets70 "Yes, I was told 20 years ago that I had APS, but last year a hematologist..." + (show)
Profile picture for reets70 @reets70

Yes, I was told 20 years ago that I had APS, but last year a hematologist said I don’t. I had a blood clot last year and while I was hospitalized all the blood tests did not show APS. I was prescribed Plaquenel and Methotrexate 20 years ago and still on Plaquenel today. I’m 86 years old and have no idea which diagnosis is correct.

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@reets70 Thank you so much for taking your time to share your story with me. I think it might be time for me to consult another rheumatologist. I need some definite answers. You have been very helpful.

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mrsruby | @mrsruby | Jun 23 8:17am
In reply to @swalex "@artemis1886 High anti-double-stranded DNA antibody levels indicate the presence of autoantibodies that mistakenly target your body's..." + (show)
Profile picture for swalex @swalex

@artemis1886
High anti-double-stranded DNA antibody levels indicate the presence of autoantibodies that mistakenly target your body's own genetic material. Elevated anti-dsDNA levels can sometimes be associated with lupus activity, but only a doctor can interpret these results by including other laboratory findings.
If your rheumatologist hasn't started treatment and you're continuing to decline, I would strongly encourage you to contact them again as soon as possible and seek a second opinion.

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@swalex thank you, through all of these helpful suggestions, I am going to seek out a second opinion. Thus far lupus has been ruled out. Your information was very helpful.

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artemis1886 | @artemis1886 | Jun 23 6:40pm
In reply to @swalex "@artemis1886 High anti-double-stranded DNA antibody levels indicate the presence of autoantibodies that mistakenly target your body's..." + (show)
Profile picture for swalex @swalex

@artemis1886
High anti-double-stranded DNA antibody levels indicate the presence of autoantibodies that mistakenly target your body's own genetic material. Elevated anti-dsDNA levels can sometimes be associated with lupus activity, but only a doctor can interpret these results by including other laboratory findings.
If your rheumatologist hasn't started treatment and you're continuing to decline, I would strongly encourage you to contact them again as soon as possible and seek a second opinion.

Jump to this post

@swalex I am having labs redrawn. All this confirms what we already know. I have had the lupus rash the majority of my life. The doctor is making sure my labs are okay to start me on Benista a drug for lupus. My sed rate is 135 along with the dna-ds being elevated. I tested positive for sojourns, lupus MCTD and lupus. I grew up on IVIG from age 10-18. I am back on it. I am taking Panzyga

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