Antiphospholipid Syndrome (APS)

Good Morning!!

I'm not feeling very well today.  I believe that mostly it's the heat that has brought on this flare of sorts.  We have been having record breaking temps of over 100 degrees.  Aside from my usual flare symptoms, I've developed extremely bothersome rashes underneath my breasts.  Therefore, I am going to stay indoors until this heat breaks.  Thank God for my son who will be driving my daughter to Anderson today for her training.  Thank you Sweetheart!

I want to talk a little bit about Hughes Syndrome.  Otherwise called Antiphisiploid Syndrome.  You can read about it at http://www.hughes-syndrome.org/.

Way before we even knew I had Lupus or RA I had fibromylagia.  Then I started to experience very strange neurological symptoms.  It was hard for me to explain these symptoms to my doctors.  They were sort of like facial tingling but only on the left side of my face.  What would happen is I would begin to feel pulling above my left cheek and this pulling would travel down the left side of my body.

Once I could put this into words my rheumi at the time asked me to remove my shirt and she examined my arms and breasts.  What she saw there looked like a webbing of sorts underneath my skin.  I never thought anything of this as it has been there most of my life as far as I can remember.  She asked me a million questions.  Questions about my pregnancies especially.  Both of which had been riddled with complications.  She ordered blood tests for what she called Antiphisiploid Syndrome.  This doctor explained what APS was and she was sure that I had it.  Sure enough the blood tests came back positive for APS and the Lupus Anticoagulant (which is not Lupus).  Monthly blood tests continue to confirm this dx.

I was put on a baby aspirin a day but my symptoms continued. I was put on Plavix but still I experienced symptoms.  Then I took both aspirin and Plavix.  My symptoms lessened but did not disappear entirely.

Otherwise I felt fine.  My fibro was pretty much under control and aside from these other symptoms which occurred only periodically I went through my life feeling fine.

I need to add at this point that during that period of time in my life, I was the perfect weight.  Ate a high fiber, low fat diet.  Drank at least 8 glasses of water daily.   I didn't exercise regularly, but was very active and walked a lot.

One day (it was May 13, 2003, I remember that day because it was the day before my 45th birthday) on my way to work I started to feel these symptoms again.  This time they were very pronounced.  I was driving and almost at work so I continued on my way to work.  In the elevator on my way to my office my coworker told me that I looked horrible and very pale.  I worked at a nursing home and had to pass the nurse's station on the way to my office.  One nurse, Pat, noticed me and sat me down.  By that point I could hardly speak and was very confused.  What happened after that is somewhat of a blur.  All I know is that I was later told that my blood pressure was something like 210/170.  911 was called and I was rushed to the ER.  Thankfully, my supervisor (the administrator of the nursing home) knew the administrator of the local hospital ER.  So he called ahead and explained my medical history of APS.  I was given TPA and some other IV things.  My condition stabilized and was admitted.

It was decided that I needed to be on Coumadin which is a blood thinner.  It is the prescribed treatment for APS.  But until my INR  (International Normalized Ratio ~ the level of anticoagulant/blood thinner in a person's blood) became therapeutic I remained in the hospital on a heparin IV.  I think I was in the hospital for a week maybe less.  It was agreed that I had a stroke.

Thankfully I was not left with any serious deficits.  Minor left sided weakness and a seizure disorder which they are still not sure was caused by the stroke or the APS.

To this day whenever my INR goes too low I start to experience those symptoms. For the last five years I have had my INR levels monitored regularly.  I even have a monitoring device here at home.  http://protimetest.com/  It's done with a simple finger prick.  I get my INR and PTT levels.  But after all this time I know before hand just by the way I am feeling if my levels are too low or too high.  Both of which are not good.  With a low INR I am at risk for throwing a clot.  An INR that is too high can cause internal bleeding. When this happens I have a headache and bruise easily.  My gums will bleed when I brush my teeth.

APS has been misdiagnosed as MS.  Here is a portion of the above mentioned web site:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine	Giddiness
Memory loss	Visual disturbance
Skin disorders	Thrombosis - DVTs
Heart attack	Stroke
Pulmonary embollism	Multiple Sclerosis-like features
Gastrointestinal disorders	Pregnancy problems

Only until recently (maybe a year) has my INR levels remained therapeutic.  Diet and other medications can cause a person's INR (while they are taking blood thinners {not Plavix}) to become unstable.  Eating too many leafy green veggies (Vitamin K veggies) like spinach lower your INR.  Taking aspirin or Ibuprofen.

Because I later developed Lupus and RA and had to be on more medications my INR levels were very unstable for quite some time.

Now that we have moved and have yet to fine a doctor to take me as a patient, I have been self testing.  I got the name of a doctor in the area who may be accepting new patients as well as a local Anticoagulation Center from my next door neighbor.  She is also the apartment complex manager.  I plan on calling them later on today.

In the Hughes Foundation web site it says that once INR levels are therapeutic symptoms disappear.  I believe this to be true.  I was also told that the cognitive dysfunction will not repair itself.  But I am on Memantine (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a604006.html) and it has helped to avert any further damage to my brain cells.  My brain is full of lesions.

I was still convinced that I also had MS.  And, after many conversations with my neurologist it was agreed that I needed further testing.  My MRIs showed the lesions but she ordered a SPECT scan ( http://www.precisionradiotherapy.com/PE-SPECT.htm) which showed cerebral vasculitis but no MS.

It's important that anyone with any of these symptoms be tested.  Especially if you have livedo reticularis.  Here is a picture of it.

Read through the Hughes Syndrome web site.  Or do a search for antiphospholipid syndrome (APS).  It was very helpful for me.

Tags: Antiphospholipid Syndrome, Hughes Syndrome, Hughes Foundation, Coumadin, INR, Anticoagulation, Atypical MS Symptoms

Both of my children have gotten jobs.  We have only been here three weeks.  This is good.  Everyone appears happy.

But me.  I have pushed my body to the limit.  Both physically and emotionally.  Now I am living in flare land.  I knew it was coming but I ignored the signs.  This morning I woke up a mess.  Aside from the pain and fatigue, my head was/is a mess.  Very foggy and confused.

I slept most of the day.  I hope this doesn't last long.  I've yet to find a doctor.  If things continue and I still feel this sick I might just go to the ER.  I think that is the simplest way to find a doctor.

On a better note, my sister's visit was really nice.  It was great to see her.  It was even nicer for all of us to be together.  We did a lot.  Last night we all went out for dinner and then to an amusement attraction.  I played skey (sp?) ball.  We didn't get home until about 1 am.  We spent most of our time at my brother and sister in-law's house.  My sister in-law, Carol, is a great cook.  I was amazed the other day when she whipped up king crab legs, shrimp scampi, fried flounder and scungili in no time at all.  And, it was so delicious.

I'm sure that the pace I have been keeping up these last three weeks has attributed, if not caused, this flare.  If a flare is ever worth it, this one is.  Because I really did have a great week.

Hugs, LuAnne

Good Morning Friends!!

Yesterday's rheumi appointment did not produced positive results.  It appears as if he is leaving the practice.  I have been referred to another rheumi as well as a primary care physician.  I'm not that concerned as I really do not have any history with him anyway.   Also, while speaking with him I was informed that they do not monitor the INR of their patients on blood thinners.  We attempted to call the new doctors.  As far as the rheumi was concerned, their telephone was busy all day long.  I'm a tad leery about that.  Today I will contact the Lupus Foundation of Easley for a referral to another doctor.  We did get to speak to someone at the primary care doc's office.  I have to go in there first to pick up some paperwork.  I plan on doing that today.

I am probably going to do an Internet search for rheumis as well.

Yesterday my entire family took a road trip of sorts.  I attempted to keep up with them but the day was hot and extremely muggy.  My legs started to hurt a lot and I ended up feeling tense.  But I did keep up almost to the end.  It was a nice day and I was happy to be with my family.

Today we plan on doing nothing much.

Hugs, LuAnne

Sunday Morning

 

Today is a dreary day here in the Upstate.  It's going to be warm and muggy most of the week with scattered thunderstorms.  We keep hoping that one of these storms will send the humidity away but it keeps getting worse. 

Tomorrow I have an appointment with my new rheumi.  I met him in May when we were down here.  He seems fine.  Time will tell.  He has very big shoes to fill.  Not only was I used to Dr. Goldstein, but he was a great and understand MD.  I knew him.  But more importantly, he knew me.  It took years for us to develop that relationship.  I remember my first appointment with Dr. G.  I had just fired my first rheumi.  She was a good doctor but very overwhelmed and her staff sucked.  But as my conditions became more complicated I felt as if she wasn't stepping up to the plate.  I felt it was time for a new doctor.  So Dr. G. was recommended.  My first appointment with him lasted for over an hour.  He said that is how he handles new patients.  I had a zillion questions.  But it was my initial statement to him and how I viewed his reaction to it that would convince me if I wanted to stay with him.  I told him that I was an extremely proactive patient (I was at that time.)  That I was very involved in my care.  I said to him that I needed to be assured that he would be available to me when I needed him.  And, that because I saw many other specialists that he didn't have any problem working with them.  I also needed to make sure that his staff relayed messages to him in a timely manner.

The rest is history because I was with him for years.

This first appointment will be somewhat different.  As I am more comfortable withmy illnesses.  I no longer care (for lack of a better word) about what my blood work says. My position is to leave it up to the doctor.  If he sees something on my blood work that needs addressing that is up to him.  I no longer go to my appointments armed with lists and comments.  Therefore I am in and out in record time.

My concerns now are that I am as pain and fatigue free as relatively possible. We discuss how I have been doing.  He comments and makes suggestions and I accept his expertise.  I get a steroid shot or two and prescriptions for my meds and I am on my way.

This new rheumi is in a practice with an internist, pain management doc, a neurologist and I think a cardiologist. This makes everything that much easier.

My only concern for this appointment is how he plans on managing my Jantoven (blood thinner - generic coumadin) levels.  In NY I went to the anticoagulation center.  There are a few here but not in the immediate area.  A 15 - 20 minute drive.  I have the blood testing machine and a mediocre supply of testing strips here at home so I can test myself if need be.  But I need someone to call and report my numbers to.  I would prefer not to have to drive into Greenville for each testing. In NY I would go about every two weeks.  Sometimes three.  In the 5 years since I have been on anticoagulation meds I went a month without testing only a handful of times.  So having to drive into Greenville is the last thing I want to do.  I will see how he wants to handle this.  Maybe he will just want to send me for blood work monthly to check my levels.  I could test myself in between if need be.  Those test strips are very expensive and Medicare does not pay for them unless you have a mechanical heart valve.

That's another thing I have to think about.  I need to get some sort of Medicare HMO coverage.  Here in SC that insurance is called Humana.  I have been reading about it and so far so good. The doctor copays are $15 and $20 for specialists.  Prescription copays are $4 for generic and I think $15 for name brands.  That is great compared to what I had in NY through Gary's job.  Sometimes my Rx copays would be over $100 for one med.  The Humana website had an Rx search thingie and all but one of my meds was covered.  The methotrexate was not covered.  But, it did say that for that med the physician needed to preauthorize it.  But I am sure that this new doc is going to take me off of that and put me on some sort of infusion med.  We talked about that when I was there in May.

So all is good on the medical front.  I feel pretty good.  Today is two weeks since we arrived and I can honestly say that I had to slow down and rest only two days.  And, they were two separate days, not together.

My sister and her hubby arrived here last night.  They are staying with my brother.  We are going there to see them and have a huge family dinner late on.  I am very excited as I haven't seen my sister, Kathy, in quite some time.

This move has proved to be all that I expected.  I enjoy seeing my family all the time so much.  My doorbell rings and it's my Mom and I love it.  We haven't closed yet on the construction loan.  More on that in my other journal (check the sidebar of this journal for the link to So you think you want to build a house.)

Hugs, 

 

Good Morning.  Just a quick note about our move.  We arrived here in SC on Sunday, July 15 at about 4 PM.  We made the trip from NY in two days.  Staying overnight in Virginia.  The kids flew down from NY on Saturday, July 14.  My brother picked them up at the airport.  We are all doing well.  The kids already have job interviews set up for today.  Everyone is happy.  We already loved it here, so living here was a no brainier.  Plus, I am feeling pretty great.  Good enough to have finished all the unpacking.  Our furniture arrived here 6 days after we did.  Everything is in place.  The apartment is nice.  Somewhat smaller than the house we had in NY so some furniture and many boxes had to be put in a storage room we are renting.  Still waiting for a closing date.  Apparently they are waiting for the appraisal.  Which I don't quite understand because there is nothing there.  It's just a plot of land.  Oh well.

Here is a meme I stole from Dawn at http://journals.aol.com/princesssaurora/CarpeDiem/

I Live: Easley, South Carolina now.

I Work: Not outside the house as I am disabled due to my illnesses.

I Talk: to anyone and everyone!

I Wish: for way too many things.

I Enjoy: that first cup of coffee in the morning.  I am a coffee snob as I really only enjoy my own coffee.  Although I do love Starbucks, McDonald's and diner coffee.

I Look: with the eyes of a child.

I Find:  the good in most people.  Or at least I try.

I Smell:  a carmel Old Virginia Wood Wick candle that is burning on top of my entertainment unit right now.

I Listen:  when I am not stressed.  Then I seem to lose that ability

I Hide:  nothing

I Pray:  too little

I Write:  everything down or I seem to forget it. (Dawn I stole this one from you.)

I See:  a lot and a little

I Sing:  along with songs I like.  Even though I have the most horrendous singing voice and CANNOT hold a tune.

I Laugh:  a lot

I Can:  therefore I do

I Watch: All of the CSI shows, all the Law and Orders, Charmed, Angel, Big Love, Dexter, Project Runway, America's Next Top Model and those new karaoke shows on TV.

I Yearn:  for it to be this time next year.  Yeah, yeah I know not to wish (or in this case yearn) my life away.  But, I just want this house started and completed already.

I Daydream: a lot

I Fall:  all the time.  I am very uncoordinated.

I Want:  to win the lottery.  (he he don't we all?) (Another I stole from Dawn)

I Cry:  haven't in a while.

I Burn:  even if I am out in the sun for 10 minutes.  Goes along with the Lupus and the reactions some of the meds I take.

I Read:  not as much as I want.  Ever since I got sick I cannot read as well as I used to.  Oh I know how to, just can't seem to concentrate long enough to read more than one or two sentences.

I Love:  My husband sooooooooo much.

I Rode:  in a car yesterday, LOL

I Sometimes:  want scream really loud.

I Hurt:  physically more than the next person.

I Fear:  not much

I Hope:  that I am living my life with morals and raising my children right.

I Break:  way too many things.

I Eat:  not as much as I used to.

I Bathe: I'm a shower gal.  Although, lately I have been soaking in the tub because it helps with the inflammation.

I Drink:  COFFEE, diet green tea, sweat tea (hey I'm a Southerner now) and lately water. 

I Stop:  and crash

I Save:  nah

I Hug:  and love to be hugged.

I Meditate:  nope, more like pray

I Play:  no instruments.  Although, I used to be able to play Beethoven's Fifth on the piano with my right hand.

I Miss: my father and my grandparents.  Friends that couldn't handle me being ill.  Sorry, but I don't miss New York one bit.

I Hold: onto my hubby so much lately.  I couldn't survive life without him.

I Forgive:  without being asked. 

I Drive:  everyone crazy

I Learned:  not to sweat the small stuff.  I don't always do it, but I try.

I Dream:  vividly.

I Have:  the best family and life in the world.

I Don't:  think worrying about anything helps.  The time spent worrying is time you lose from your life.  What is going to happen is going to happen.

I Made:  or make a great gravy.  For those of you who don't know what I mean .... Italian's all tomato sauce with lots of meat..... gravy.

I Believe: that Jesus died for my sins.  And, that if I were the only person on earth, he still would have died for me.

I Wait:  way too much.  Gary says I have no patience.

I Need:  get my eyes checked.

I Owe:  a lot to my mother.  She is pretty amazing.

I Hate:  prejudice.

I Feel:  pretty good.

I Know:  my husband loves me and I love him back.

I Wonder:  what tomorrow will bring.

I Applaud:  anyone who cares for the elderly and infirm.

I Love: intensely.

Tags: Easley, SC, Lupus,

Good Morning

My daughter, Lauren, is sick with a bad head cold and her eyes are red and weepy.  I suspect she has a sinus infection and they are draining out through her eyes.  I had that a few weeks back.  Yesterday I put some left over drops I had from when I had it in her eyes.  But today I will take her to the doctor to get checked out.  My poor baby is so miserable.

It's amazing and I am very excited.  I do believe that I am over this flare.  I have been feeling horrible since I had my left inguinal hernia repair about three years ago.  During that time I might have had a day or two here and there where I felt okay, but always ended up feeling worse after that.  But now this great feeling has been going on for a few weeks now.  The only time I feel crappie is the day after I take my methotrexate.  I take it on Saturday evening and always the next day I am wiped out and my stomach spasms (with all that nifty stuff that goes along with belly spasms.)

Even with my terrible sleep hygiene, I still feel good.  I've tried everything I can to correct this problem, but nothing is working.  I have no problem falling asleep.  It's staying asleep that is the problem.  I even got a Rx from my doc.  He gave me Ambien.  I take it when I get up during the night.  It's usually around 11 or midnight.  But it does nothing for me.  An Advil PM works better.  But not great.

I'm also weaning off of my pain medication.  I wear what is called Fentanyl Duragesic patches.  I was on 125 mcgs now I'm down to 50.  Also, I haven't needed to take my big gun meds in quite a while.  I take 200 mgs of Celebrex in the AM then again in the PM and that seems to work well.

I was afraid that with this move, new doctors wouldn't be so agreeable to prescribing such strong narcotic pain meds.  I was afraid that if that happened I would end up without the meds and go into withdrawal.  I tried to stop the pain meds a little while ago and did it incorrectly and ended up being admitted to the hospital with withdrawal symptoms.  At that time they educated me about how to do it correctly. A pain management specialist came to see me and gave me a detailed explanation of how to wean off such strong narcotic/opiate meds.  So I followed his instructions and am doing great.

Although my right foot has been really very painful.  Gary and I went to see our podiatrist friend and he gave me two cortisone injections and the pain is minimal now.  I just love this doctor.  He has been our podiatrist for many years and we are worried that we won't find anyone as wonderful as he is down in SC.

As far as how I feel is concerned, I don't know if it's my adrenaline that is on overdrive making me feel great or the continued use of prednisione or just the end of a very long flare.  What ever it is, I am happy.

As far as the continued prednisione is concerned, I am not at all happy about having to take anywhere from 15 to 20 mgs daily.  I went to my yearly GYN appointment and my doctor suggested a DEXA (bone density) exam.  For which I am going to this morning.  My hips have been giving me problems.  I should have the results before we leave for SC.

My doctors copied my medical records and I will be bring them with me.  I have already seen a rheumatologist in Easley so that is taken care of.  In that practice is the rheumi, a neurologist, an internist and a pain management doc.  Those are who I see on a regular basis.  As far as those yearly visits to the Gyn, Cardiologist, Endocrinologist, etc.  I will have this rheumi recommend docs he knows.

Well, that's it for now.  Except we only have 9 more days until the big move.  To read all about our move to SC check out my other journal.  Look for it on the sidebar under Other Journals.

IT'S BEEN A WHILE

Good Morning!

It's been almost a month since I last wrote an entry in this journal.  I have been so busy preparing for our move to Easley, SC .  We are moving on Juloy 14th.

Also, I have been neglectful in commenting on other's journals.  Please forgive me.

On June  7th I was sitting in my doctor's waiting room when I started to feel my face and upper body on the left side begin to feel tight , get tingly and go numb.  I got the attention of his receptionist and she called him out to check on me.  He had just finished with his patient and took me in his office.  He examined me and suspected that I was having another TIA so he sent me right over to the ER.  I panicked and ended up driving.  Stupid I know.  At the ER they took tests (blood, X-ray, CAT scan.)  It was determined that my coumadin level was too low.  it was 1.9. A therapeutic range for someone with APS is 3 to 3.5 so I was admitted for observation and stroke watch.  I was hooked up to a heparin IV as a precaution and my coumadin (I take the generic form called Jantoven) was increased.

Needless to say I was not happy about being in the hospital.  I just wanted to go home and I made everyone there aware of that fact.  I was not a very good patient.  But I knew that I needed to stay so I calmed down.  Plus they gave me something to relax me.  Which it did very well.

 

             

Now when I get admitted to the hospital I tell Gary to stay at work.  It's not necessary for him to come hold my hand.  It's fine that he comes after work.  In the beginning when I got sick he would always leave work.  It got to the point that sometimes I would be in the hospital two times a month.  He always wants to leave work but now I make him wait until he gets off.

           

I only ended up staying overnight.  Although early Friday morning I started to have some visual problems so the hospital attending doctor (they call them hospitalists now) had to be called.  I heard them over the loudspeaker calling him STAT to my room.  The visual disturbance only lasted an hour or so.  They saw no cause to worry.  But, (as those of you who are familiar with being in the hospital know) they come to draw blood a few times during the day.  The Hospitalist returned to my room to tell me that my H and H was off and they suspected internal bleeding somewhere.  The tech returned to take even more blood.  My counts were returning to normal.  But they wanted one more blood draw before they discharged me.  It came back fine and I was released at 6:00 PM. 

                            

 I was very happy to get home. 

I'm asking all of my readers to pray for Dawn of  http://journals.aol.com/princesssaurora/CarpeDiem/

Dawn has some serious health issues.  Please visit her journal and offer support.

Thank you!