Hello! I’m new here.

[LaciSelph]

Hey I’m new here and I had a few questions. First let me give you some insight. I have been dealing with APS since April 2019 so I’m also new to APS. I’m 23 and I’ve been in and out of the hospital with multiple blood clots since April. Also I’ve had 2 miscarriages. I was wondering if there was anyone on here my age?Also wondering if anyone has clots without the typical symptoms? I’m in constant fear. Also I believe my APS is a bit more severe than most and I really want to have a baby so has anyone had any luck with babies?

[HollyHeski Administrator]

Welcome, to answer your questions, yes, yes & yes.

I'm sorry you've been through so much and the loss of your babies. Many if us can relate to your health story.

The key here is to have a good APS specialist, where are you based?

Have a look at our charity web pages.

ghic.world/

Others will come on soon to share their experiences with you, that will calm your fears and give you confidence to manage your APS.

[rach1081985]

Hi my love.... I was round bout ur age diagnosed.. I'm 34 now and had multiple clots too... I have vein damage in both my legs and been intensive care twice clotted all over and on my lungs twice.... As long As u have a good specialist and well coagulated u should be OK... Aps is very complex and not just clotting... Don't lose hope if a baby I've had 2 children... Bit of trouble in youngest but all turned out OK in end.. Look at my profile and feel free to message xxx sorry I'm not good with words..... Sorry bout your losses xxx

[KellyInTexas Administrator]

Hi Laci,

To echo Holly,

Yes, yes, and yes.

I’m going to ask you several questions to help you better help you.

1. Where do you live? ( I think the USA.) If its USA) which state and city please.

I’m trying to ascertain your level of care, APS specialists, ( if you have one, level of knowledge, access that doctor has to a multi disciplinary team that is familiar ( not text book only but hand on daily in application in its various presentations ) with APS.

2. Can you tell me the different types of doctors you currently see?

3. Are you currently on anticoagulation? What kind? If warfarin, what is your INR target?

4. Do you have arterial involvement? Is it also neurological? If so are you under the care of a neurologist? He’s there been any discussions of an anti platelet if arterial involvement ? Usually this is the case if the the APS is severe. ( meaning arterial and veins are involved , and continued events occur while properly anticoagulated. When this happens- usually severe patients are considered for immune supression agents. Have any of your doctors spoken to you about any of these issues? ( refer to question number 2.)

5. Did you have your miscarriages once diagnosed with APS? ( another question linked to question number 2. Are you seeing a trend for the importantance of specialists? )

6. What about your family history? Any auto immune diseases? This is a question Rheumatoligists focus on. ( another reference to question number 2...I think you must have either a Rheumatoligist or endocrinologist to have the hypothyroid diagnosis. This is a very good indicator you have a start to some plan if a team. Are they all communicating and on the same page?)

7. Regarding future pregnancies: Your disease process would need to be stabilized and assessed by an APS specialty team.

There are certainly very good protocols in place to manage mother and baby in mothers with APS who are well enough to become pregnant.

The success rates are very high!

It involves low molecular weight heparin ( and usually a little aspirin) during pregnancy and about 6 weeks post partum and normally a delivery at about 36/37 weeks.

It has truly been almost miraculous- when mothers discover the reason ( APS) as the reason for their many multiple past miscarriages, then begin the proper treatment and have a healthy baby.

It may not be perfectly smooth sailing- and you will need to get all systems checked very carefully.

The most important thing is that you are safe. You have been diagnosed now. That’s huge! Now... I recommend to focus on you for the next few months. Get a team in place for your over all health. That’s priority one. Get your doctors in place for you if you have not already done so. ( that you need on a day to day/ month to month basis.)

Then they will help you outsource to the other Obgyn high risk centers later -

I’m glad you found us, and we do hope we can help you.

One benefit of a group like this is to help you formulate targeted questions as you organize your list before your next dr’s appointment, to think through dilemmas as a group , and hear what others experiences have been in general when it comes to very specific diseases like this.

It’s so important to find specialists, so let us know where you are.

[MaryF Administrator]

Hi, you have landed in the right place, we are mixture of ages on here, and some of us were your age once, and also had it, having said that yes, we do have plenty of younger members on here. You will find great support and information, feel free to ask us questions. Please don't be frightened, it is better to have the correct diagnosis, the right medication and the recommended medical specialist nearest to you in your particular area, some on the charity website you have been given, and also over on the right hand of our forum under 'pinned posts' for those of us in the UK. Best wishes to you. Mary F

[LaciSelph]

Awe you all are so kind!!!

Okay so I’m from Starke Florida USA.

I have a primary doctor in Starke.

I have a Hematologist and a Rheumatologist at UFHealth in Gainesville. I also go to the Coumadin clinic there for monitoring.

I also have an appointment soon with a Dermatologist at UFHealth.

(Also trying to diagnose Lupus)

Yes I take warfarin now. I take 10mg everyday except Monday I take 15mg.

My range is 2-3. They were talking about raising my range because I am still having clots. I went to the hospital last night because I thought I had a new clot(better safe than sorry) I didn’t have a new clot but I’m still have bad dizzy spells!! INR 3.2

No arterial clots so far and no neurological problems

I had a miscarriage then 4 months later APS diagnosis and I just had another miscarriage in August a week before my Sister died.

My Mother has Lupus. I have Hypothyroidism. I like my doctors but I don’t think they communicate but I do far haven’t had an issue with it.

We are waiting until I’m healthy and I find a good OBGYN to try for another baby.

Currently worried about this dizziness!!! It’s not vertigo. It’s when Im laying down. Like the whole room spins!

[KellyInTexas Administrator]

rheumnow.com/content/2019-e...

You are under coagulated. Your INR should not be set this low with multiple blood clots.

1. With multiple clots despite being on anticoagulation therapy- your Hematologist would be wise in my opinion to consider raising the INR to 3.5 at least. ( provided you were even hitting 3.0 - top of your range consistently!)

2. I’m not sure I would consider your case severe yet, I would consider you under treated. I’m not even sure you were staying in your therapeutic range of 2-3 most of the time. Are you? How are you tracking your INR? How often are you being drawn?

3. It’s my belief you are having micro emboli in your ears. This is very common. ( I had this with INR of 3.5 or below. I needed higher. The tiny capillaries in ears can clot causing vertigo when we lay down, or change positions while laying down. Or get up.)

4. Dr Kenaway in Panama City is a Rheumatoligist who is known to have experience with APS. I saw Dr Frank Lu in Panama City for a consultant APS Hematologist, but he passed away a couple of years ago. He had my INR at 4.0-4.5 minimum but I had multiple DVT’s and arterial clotting, seizures, and an eye clot- optic nerve. ( I’m now on Rituximab.) My INR was raised in increments as I continued to clot.

5. You might want to be checked for a genetic polymorphism called VKORC1. I have 1 copy- I’m an incomplete metabolizer of warfarin/ Coumadin. At your INR I needed about the same amount. It will not matter, as long as you can achieve an INR range that works for you. It’s just data.

[judes]

That kelly in Texas asks a lot of questions BUT she really knows her stuff be guided by her, I’ve had APS for 20+ years and still don’t know half of it!

What I would say is the only thing to fear is fear itself

Love and hugs

J

[GinaD]

FYI: most docs are carefully taught in med school to fear warfarin and the bleeds that drug can and does cause in patients. Which is why docs not well versed in APS tend to under prescribe warfarin to us APSers. Since we have ( and I prefer this name as it is more descriptive) Sticky Blood Syndrome, the chances of warfarin induced bleeds is much lower in us. But most docs have not experienced that warfarin-risk disparity. Hence, one reason why consulting with an experienced provider is a must. ( And, by the way, most of us achieve stability after the right prescription is found. So distant drives to reach an experienced provider may be frequent at first, but later taper off to once or twice a year.)

[LaciSelph]

Okay so they are okay with my INR being 3.2. That’s the highest it’s ever been. Before that it’s never been above 2.4. I had weekly appointments when I started warfarin. My INR started out at 1.2

I haven’t had a new clot since being on warfarin for three months. I was previously on enoxaparin shots.

As far as dizziness idk if that’s what’s causing it or if it could be other medications. It’s annoying though!!

Some more good news though my Rheumatologist put me on Plaquenil to treat my lupus symptoms. He said I definitely meet the criteria for lupus!

[amy1808 in reply to LaciSelph]

I agree with kelly , your inr needs to be 3.5/4 . You’ll feel so much better .

I was diagnosed 4 years ago after multiple strokes , and I’m still getting new symptoms now . You dizziness could be vertigo but don’t worry there’s a pill for that too 🤦‍♀️.

Please please make sure you see a APS specialist it makes a huge difference. I went a whole year before I found my Professor Haye , all the others didn’t have a enough experience with APS . I even went private to guys to see one of Professors Hughes guys and he made sure I was treated for everything under one roof then all the different departments I had to see could actually discuss treatment . I was going all over the country seeing neuro , etc , now I’m in one place Manchester Royal. I don’t see proff Hayes now I see one of his colleagues who is just as clued up 🙏

My APS family on here have helped me out tremendously. Even the little things that niggle you , please ask because one of us will have experienced it that’s for sure .

Xx

[Lure2]

Please listen to our Administrators!

Get a Specialist (!!) and get a stable and correct anticoagulation!