Antiphospholipid Syndrome Support Group

Hi,
First of all I guess I better introduce myself and let you know why I have just registered...

I am a 44 year old female, just returned home after a 7 week hospital stay and have been diagnosed with Antiphospholipid Syndrome and dont know anyone with the same problem!

It has had a major impact on my life and im interested to learn of others experiences!

Dee

Welcome Dee,
7 weeks in the hospital is a long time...You said APS has had a major impact on you. I would like to hear your experience that sent you there for so long.

Before I was diagnosed I was treated for Lupus for 15yrs. In '01 Dr.Hughes' work showed you don't have to have Lupus to have APS.
I stopped the Prednisone ( thank God) and just take Warfarin today.
I don't want to frighten anyone here, so I'm not sure what to leave out of my story. I spent two months in the hospital too. With deep vein blood clots (thrombosis). Lots of complications.
But I came out sooo thrilled to be alive!
How about you?
Nice to meet someone with APS.
God Bless...

Well, guess i'm afraid to share my experience too as I dont want to frighten anyone but i'm not afraid to discuss my experiences and look forward to hearing what you been through...

Reply #3 - 10/05/09 5:24pm


Well, guess i'm afraid to share my experience too as I dont want to frighten anyone but i'm not afraid to discuss my experiences and look forward to hearing what you been through..
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Hi Dee,
My experience after the hospital stay mentioned before, is three strokes. The first I had, I recovered in 10 days at the hospital. The last two effected my eyes. But I can see fine today.
Now that I am on blood thinners I am doing well. My INR is between 2 to3 and watched carefully by the coumadin clinic.
I feel Blessed!

Welcome to the group and Im glad you guys have found a place where there are others who suffer from this disease as well. This disease can be very mis understood, even by some dr.s. I have had APS for 10 years and am pretty knowlegable about it. More so then some dr.s I have seen in the past years. That being said, although we are not dr.s, if someone here is being given false information from their dr.s which may be suggested by some list members, it may be that you need to see another dr. for a second opinion. I see a rheumatologist who is very knowlegable about APS. There is much more to this disease and it can affect us more then just causing clotting events. Rheumatologists specialize on the auto-immune part of this disease. There is other treatment for APS as well as a slew of other symptoms then just blood thinners/clotting. Not trying to scare anyone. Just want you to be aware. I am extemely sick from APS. It affects every part of my body and Im on severe immuno suppressant drugs to control it. I am very fortunate to have a good rheumatologist. He has saved me life. I have had some negative experiences with some dr.s who were not knowlegable about this disease and have given me untrue info which could have killed me. This can be a serious disease for some of us so proper treatment and knowlege is the key.

I will try to give you my backround as quickly as possible. Honestly, I could write a book about my experience. I have been sick my entire life but after open chest surgery to remove a mass from my chest (which was a thymoma due to autoimmune disease) I never recovered and actually got extremely sick to the point that I felt like I was literally dying. I had severe muscle/joint pain, inflamation, fevers, night sweats, headaches, nausea,numbness and tingling in my extremeties, flu like symptoms that never went away and the list goes on. I wanted to do myself in, I was that sick. I went to dr.s who said something was going on, they just didnt know what. I finally went to a rheumatologist who tested me for everything under the sun. The red flags for him to test me for APS was the numbness/tingling and headaches. My beta 2 glycoprotein test came back highly elevated which was when I was diagnosed with APS. The test came back elevated for 6 months until my medication of plaquenil kicked in. It saved my life. I was also put on Plavix but the plaquenil is what really made the difference in my symptoms. My blood work eventually went down to normal by a year on meds and almost all my symptoms were gone. I flared here and there but was able to function and eventually went into remission where I was able to try to have a baby. It was during that time that I tested positive for the MTHFR gene which is common with APS. Was on lovenox injections and had a baby. I was in remission until after I stopped nursing (18 months), then flared again. I was put on plaquenil again until last year when severe stress of losing both my inlaws (terminal cancer) triggered a horrible flare up and plaquenil was not enough any more. I was the sickest I have ever been. And, had more symptoms that I had not previously had. So, after my blood work was done and confirmed that inflamation was going on again, I was put on prednisone and methotrextrate, along with my other drugs. It has taken almost a year for me to feel functional again. I am immuno suppressed/compromised and freaked out about getting germs/virus;s. It stinks having no immune system. It stinks being young and sick and having a toddler to care for. It stinks worry about clotting 24/7 But, at least I am feeling/doing better and I am so grateful for that.

Not everyone with APS gets as sick as I am. Some people never do. BUT, be AWARE that this disease can cause multiple symptoms and if you start to get anything like what I described, get to your dr. or find a knowlegable one to go to. Many dr.s will tell you that you cannot feel sick from APS and that is simply UNTRUE. Most APS info doesnt state all the treatments available or symptoms it can cause. Gotta run, toddler screaming
Melissa

thank you so much for taking time to reply, I have been in bed for 2 weeks with lower back pain... not good, following a spinal operation 12 years ago has left my back vunerable and after losing sight with strokes its taken some tumbles and falls. will reply tomorrow if im feeling better
x x

not much chance of sleep with pain tonight i guess!
On 31st July my life changed forever, multiple TIA's, CVA then diagnosed with the dreaded APS! Because of my storke I have just been certified visual impairment, lost 50% vision and total night blindness, major cognitive impairment as well as other serous memory issues. I was area sales manager, lost my job & driving license. Living alone is difficult too.
My APS goes back to when I was 21 when i had a miscarriage... always lived life in pain, one problem after another, operations too but APS never diagnosed until after my stroke.
My balance has become a major issue this past 3 week or so, does anyone else with APS have this problem? my joints have become very painful too, whats all that about? Im wondering if my back pain has something to do with it too as i have been in bed best part of 2 weeks and struggling to cope!

Dee

Hi Denise,
You are not alone in your struggles, I can tell you that much. I havent had a stroke, though its possible I have had TIA's, and I have total night blindness to where I cant drive at night. Before I started my new meds for APS I had horrible muscle weakness. I still have balance/cognitive problems but at least I feel well enough to function. Your back surgeries may have triggered a flare up. This can be common. And, you could have been in pain many years ago from APS and not even known about it. This is a very misunderstood disease by many dr.s.

My personal opinion is that you need to be on a medication for APS along with the blood thinners. Plaquenil is the first drug of choice for us and it gave me my life back for many years. It can help you so much. It is slow acting, taking 3-6 months to kick in, but when it does, you will feel so much better. I know several other people with APS who are also on Plaquenil. Blood thinners alone do nothing to prevent the anti-bodies from being produced which cause symptoms and inflamation. If you feel ill AND have APS then you need more then just a blood thinner. Either ask your dr. now about trying plaquenil or try to make an appointment with a rheumatologist. This is a very safe drug and has been around since world war II. It was actually designed and used for Malaria and then found to be very helpful controlling lupus and APS. You can have a life without pain and illness if you get the proper treatment for APS. The trick can be finding a good dr. that is knowlegable enough about this disease and all the treatments for it.

I am on pretty severe immuno suppressants right now for APS. Plaquenil, prednisone and methotrextrate (which is a chemo drug). Plaquenil alone worked for my symptoms for several years. Feel free to message me if you have any questions. If I cant help you, I know someone who can.
Melissa

Thanks for that Melissa, appreciate that.
I'm on 7mg of warfarin and my IRN is 2.1 , phleb from warfarin coming today to do bloods. They are doing bloods weekly as my INR dropped to 1.4 for 3 weeks. Its very unstable.
Im going to contact my GP and ask for referral to see rheumatologist for help as my joint pain is getting worse by the day.

Dee

No problem, dee. See a rheumatologist and take all your blood work with you. Make a list of your symptoms so you dont forget them when you get there. Keep me posted and feel better.

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