APS and/or PA on top of lupus

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AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 12/2/2009 1:15 PM (GMT -7)   
although knew i had lupus for a few years along with sjorgrens I was also diagnosed with APS and RA today... so I have to provide my mri results to him stating that I have had strokes and he is putting me on coumadin for life UGH...thats something else to worry about anyone else have these??
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/3/2009 10:50 AM (GMT -7)   
Hi Amy,

I have both RA and lupus, so my rheumy says I have "rhupus". I don't think I have APS but I do have some of the symptoms and plan to ask my rheumy about it.

Good luck with everything, I hope that you feel better soon!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 12/3/2009 11:20 AM (GMT -7)   
I have APS and lupus. I have two DVT on a roll, and they tested me for APS, and I am positive. I am on warafin for life. I think another member, Ginny, also has APS (if you look @ her signature).
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 7mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; pregablin 75 mg


lunacygotme79
Regular Member


Date Joined Dec 2009
Total Posts : 34
   Posted 12/3/2009 1:13 PM (GMT -7)   
Hi Amy,
Sorry to hear about the new diagnosis .... I have "rupus" as well... Never heard of APS though. I hope you feel better!
 
Diagnosed 2009: Lupus (Tumid, possible SLE);Rheumatoid Arthritis; Dermatomyositis; Optic Neuritis; Behcet's syndrome; Microscopicolitis; Chronic Gastritis; Cryptitis
 
 


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 12/3/2009 6:39 PM (GMT -7)   
thanks everyone.. nasalady i always tested negative for Antiphospholipid Antibody Syndrome up until last week... so i thought i was in the home stretch
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 12/13/2009 5:22 PM (GMT -7)   
I was diagnosed with autoimmune hepatitis in 2007. have been on liver transplant list for 2 years. Then diagnosed with lupus-like/connective tissue disease, ai hemolytic anemia, and APS. Can not take asa or coumadin due tobleeding risk from liver disease, and at risk for strokes. WHAT the...  Meds-cellcept, prednisone,plaquenil, lasix, aldactone and weekly procrit injections...

ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 12/19/2009 11:44 AM (GMT -7)   
I was diagnosed by a hematologist with APS, and can not take asa or coumadin because of underlying autoimmune hepatitis. The fear is stroke, and in my case bleeding. I have had a "brain bleed" in 2005. My advise is live as healthy as you can and one day at a time, For me falling asleep is the biggest problem. I've  been looking for a support group, but have found none. A good theraoist is essential. good luck.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/19/2009 6:47 PM (GMT -7)   
I occassionally test low positive on antiphospholipid antibodies but not enough to have aps yet I still am on baby asprin just in case
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/19/2009 11:26 PM (GMT -7)   
I tested positive for APS in 2000 when I was also diagnosed with Lupus. I was put on an aspirin daily, but it wasn't enough. I had a stroke in 2002 when I was 28. I've been on coumadin since then. I definitely feel better when my INR is between 3-4. But the target my doctors want me to be between is 2-3.

I've been having a lot of strange symptoms since early september. I had an MRI last Wednesday to see what is going on in my brain. APS symptoms mimick MS in a very big way. I either have MS or my APS is raging. Won't know until next Tuesday when I get my results back.

Living with all this crap non-stop is wearing me out.
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