A QUICK QUESTION

[ZRHONDA]

Hi I'm a newbie, I've posted very little in the way of replies. I have been diagnosed with Lupus SLE and Factor 5 Lieden. I've noticed from the reading I've done on this site that many of of you have several or multiple autoimmune issues. Does factor 5 or Lupus ever morph into APS? I apologize for my ignorance but at a I learn more about my own disease and suffer through all that goes with them I want to make sure I keep an eye out for other things and make sure my doctor's are too. I'm in U.S A it seems as if a great deal of you are in the U.K.

[Manofmendip]

Hi and welcome

Some people have Primary APS and others have Secondary APS, with Lupus being their primary condition.

Dave

[ZRHONDA in reply to Manofmendip]

Thank you Dave

[MaryF Administrator]

Hi, lots of people from the USA are on here also. Regarding your interest some do have both. ncbi.nlm.nih.gov/pubmed/112...

nhs.uk/conditions/thromboph...

Factor 5 Leiden is classed as an inherited disorder, APS is not, although it does seem to run in a pattern in some families.

MaryF

[ZRHONDA in reply to MaryF]

Thank you for your kind reply and the helpful links

[Debbweb01]

Yes I'm from USA! Have they tested u for APS? Good luck and feel better! Godspeed from NY

[ZRHONDA in reply to Debbweb01]

Thank you, I grew up on Long Island, Stonybrook/Setauket area. Nice to meet you

[Debbweb01 in reply to ZRHONDA]

I'm from Nassau County, Franklin Square, NY! Do u still live in Suffolk County! My sis does Nanny 23!

[ZRHONDA in reply to Debbweb01]

No, I'm in So. CAL. now and hate it. No change of seasons whatsoever. I want to go home!

[Nanny23 in reply to ZRHONDA]

Hi I'm nanny 23. I'm from Babylon Long Island. Welcome to the forum. You will find many knowledgeable people here.

[Tammylola2012]

Hi, I too am from the US just like Debbweb01. There are some people on here that have primary and/or secondary APS. You should check in with your specialist and make sure that you have/have not been tested for APS. APS is usually secondary when Lupus is a diagnosis. If you have not been tested for APS then I would check into getting tested as Lupus can also attack the healthy parts of blood also. Don't be afraid to ask and push back on your specialist a little. You have probably already read that this is rare and many medical professionals know little to nothing about APS (especially in the US). You are your best advocate when it comes to your health. Wishing you the best.

-Noelle

[ZRHONDA in reply to Tammylola2012]

I will make an appt. I've got to get my daughter tested too. I have a great team of hemotologists/oncologists that are Ver thorough. AndI'm starting with a new rheumatologist and cardiologist and pulmonologist next month as I was in the hospital for a week with congestive heart failure and pulmonary edema. So I want to get to the bottom of all this. I had a stroke at 48 years old and I feel like I'm 80. To top it off I have shingles right now so I'm in a really bad mood, Lol

[Debbweb01 in reply to ZRHONDA]

Awe so sorry to hear u got shingles! I'm in pain everyday of my life! I had bak surgery in July 2014! Spinal fusion, lamenectomy, and some other thing! Three in one surgery and was cured! I was out one day having fun with my mentally retarded stepson, when a 19 yr old girl decides to make a left on wrong side of road! She hit me head on with my first new car that I saved for years for! Lost it all plus my back and the police ticked her for driving on wrong side of road and she is suing me for not stopping when I saw her! Never saw her!!! I awaken every night at 3am with unbearable pain! I go to reccomended pain doc and she speaks so fast like I was on an assembly line!!! Then they tell me, like some common drug addict to pee in a cup so they can test me for drugs! I said no because my health insurance makes me go to special lab! When I got tested in my eye docs office for Sjogrens, I got stuck with a $545.00 bill I've yet to pay! Then sec'y told me since I refuse to pee in cup I can never get pain pills! I told her I don't want pain meds I want a shot to get better! I'll call her and tell them I'm not a number or on an assembly line and won't be back! It's a darn shame that because others abuse the system, I Gota pay and be treated like a common drug addict! I was so upset wen I left there! I do have an apply with my friends doc! She had 3 back surgeries and I met him and he said he cud help me! I watched him skillfully give her a shot with a Sono-tech as he guided the needle into her back! So sorry I'm going on and on, but living in USA with our healthcare system is abominable! I'm still upset about asking to pee in a cup, when it's been doctors running drug places! I went to a doc once wen he first started and he held me with shots! Then on his own he went to a common drug place! He was shutdown after one year! They get these poor regular unsuspecting people addicted and then what! I'm in healtcare and have taken care of regular people trying to get off what DICS did and they want me to pee in a cup! I send them all to hell! I'm sorry u have shingles! You must get shingles vaccine after this bout! My hubby n son got the vaccine! Are u on Acyclovir? It's very painful! We certainly don't need anything else! I too get cranky and out of sorts when the pain becomes too much! My sis Nanny 23 is on here too! After I was DX'd last October with APS, I made her go to be tested! I had to force her and she had to bring the list of tests with her! Her doc was in the dark with APS and said he'd research it! To his surprise she came up positive for APS! Thank God she's never had clots like I did at age 24! Now 63 and just DX'd! At least she knows! She is very book smart and has helped me! How did ur daughter test? You r so lucky to have great team! They tell me to c Pulmanologist too, but no I c enuf and soon I'll shut down and will only c my Hemotologist that I've taught many things to already! I found a wonderful old fashioned Rheumy that's amazed I'm still standing, one leg only, but fighting. He's funny he's thorough and want me to c immunologist that he introduced to me! She tuk one look at my bloodwork and started spouting off what I had! She's also a teacher! She's the Peace Brother type of the hippies! Really smart and really cares and does research bro help others! Can't wait to c her! A disheveled blonde that's brilliant, but has no idea what her insurance number is! Lol... You must get to the bottom of ur issues! I'm so sorry I went off on a tangent like I did! I think I just needed to vent! You can do same with me! If there's anything I can do for u just ask and I'll try to comply! My researcher Blonde sister helps too with her brain smart research! Her son is a doctor, my nephew, but DONT ask him any medical questions he refuses t help you! Lol... It's ok he's very by the book and wouldn't choos him as my doc anyway! Lol... Too close to situation! I hope ur shingles clears up fast and please ask ur doc or go to ur local pharmacy during flu shots and ask about shingles vaccine! One you get them , they tend to return! I can't get any vaccines, I'm allergic to flu shot as my dad was! I'm allergic to the preservatives in the shots!!! Lol... GODSPEED

[ZRHONDA in reply to Debbweb01]

Wow, you've been through through the wringer! I think it's good to vent and rant, we have these invisible diseases that people cant see. My parents and whole family disowned me because they thought I was just getting lazy. I was a very competent Legal Secretary for close to 30 years and I have a special needs child to deal with. I'M NOT LAZY, I'M SICK! worked hard all my life and they couldn't give me the benefit of the doubt. I had a stroke at 48, I had to take an early retirementand go b on disability. It was out of my cotrol. But they think I suddenly didn't want to do the job I loved dearly. I miss it so much but with the stroke, I can't keep up. I used to type 95 WPM now I can't even type with both hands. I got sick and I lost my family; my totally disfunctionAL judgmental cruel family. I've made a new family and I am so much happier to be out of the constant drama. But my parents are getting on in age and my mother has dementia. I do dearly love them. I just don't want them in my life. They rewrote their wI'll taking me out completely. I don't want their stuff or money, I just wanted their love, compassign and empathy. Now I've vented and ranted. Thank you. O feel much better now. GOD BLESS YOU NEW FRIEND.

[Debbweb01 in reply to ZRHONDA]

Awe Bless ur heart! I made my sister Nanny 23 also on here get tested and she has it too, but no blood clots to this day! Many tummy problems! I think because she tested positive I get support! Other than her I've been there for the world and many friends have turned their bak on me! It feel so bad to be treated that way! Have you ever read Sticky Blood by Kay Thackray! I suggest you do! I also have step son with Special Needs, William Syndrome! Another rare thing! My hubby with mud stage ALZHEIMERS and no one REALY to help me! I'm overwhelmed and confused at this time! I'm here for you and wished you still lived on Long Island! Anytime u can vent to me! That book has chapter in it on how to deal with families! I'm happy u have other friends to help, but they're not family! I have made family too! My son passed at age 24 almost 20 years ago at Christmastime and no grand kids! Neices and nephews and great and great great Neices and nephews, but not much included in their lives like I wana b! So know how it hurts! Always been judged by them! Well good luck and please ask to b tested for APS!!! Godspeed

[Tammylola2012 in reply to ZRHONDA]

I have a lot of specialists also. I have a hemo, pulmonologist, quite possibly will have a cardio also. I am Primary APS. I had a life threatening saddle PE and clot damage has now caused me to have pulmonary hypertension. I hope the shingles don't bring you down too much. I also have had those too and I understand completely how painful they are. Let us know how you get along. And so nice to meet you 😊 Noelle

[Debbweb01 in reply to Tammylola2012]

Oh no not Pulmonary Hypertension! Ask about the medicine Rivatio! My friend on that 3X a day for Pulmanary Hypertension! I'm so sorry! What pray tell is saddle PE? Is it scar tissue from it? Where in USA are you? I just messaged u! We can help each other! Have u had shingles vaccine! I also tol ZRHONDA about shingles vaccine because once u get them they tend to come back! Good luck my friend! GODSPEED

[Tammylola2012 in reply to Debbweb01]

Hi Debb, Back in 2011 I had what my quack of. Hemo told me was a "bilateral catastrophic PE" or a saddle PE. CT scan looked like Buckshot all in both of my lungs. I have since left that specialist but now suffer pulmonary hypertension because he didn't refer me to a pulmonologist at the time for treatment. I go for an echo today to see if my pulmonary pressure anymore elevated then quite possible refer for right heart cath. I will mention that drug to my pulmonologist. I live in Louisville Kentucky. Wishing you the best.

Noelle

[Debbweb01 in reply to Tammylola2012]

Oh my I was in Kentucky a couple of years ago! I loved it there! The people are great and very polite and friendly! Was in Nashville and Memphis recently! Love those areas! I may retire in Tennessee one day! Love the People! So different from New York! A lot slower paced! I relax down there! Up here everyone's in a rush to go nowhere!!! Lol...

[Tammylola2012 in reply to Debbweb01]

Have to say it may seem a little more relaxed but to me seems hectic at times. Glad you liked it so much. It is a nice area to retire to. I am so glad you had a good time. You should see it at derby time though...absolutely insane.

[ZRHONDA in reply to Tammylola2012]

Thank you for your warm welcome

[ZRHONDA in reply to Tammylola2012]

Thank you Noelle, I appreciate your warm welcome an look forward to getting to know everyone.

[Hidden]

I read somewhere that having Factor 5 can increase your risk factor for getting APS, but it does not directly cause APS. I have APS, the Factor 2 mutation, and possible Protein S deficiency.

[Hughes-Comrade]

Aps primary here with Factor V Leiden as well. Coagulated, no worries. Do ask if the Factor V Leiden gene is from both or one parent. Better if one.

[ZRHONDA in reply to Hughes-Comrade]

Nice to meet you, it's from my father

[Hidden]

You are near the BEST APS treatment medical center and research department in New York CIty..........since it is a Medical Center/Hospital they should take all insurances including Medicaid etc.

hss.edu/lupus-aps-center-of...

[MaryF Administrator in reply to Hidden]

Thank you for providing this valuable information, it is much appreciated. MaryF

[Tofino5]

I have all three, APS, LA and Factor V. I'm in the Denver Colorado area.

I never thought I'd have any specialists, but have a hematologist, endocrinologist (thyroid), & neurologist (migraines, and I need to make a change there).