APS, Factor 5 and Protein C Def. - Fatigue, vertigo, headaches, rashes and bruising

[csterling82]

History: 32/yr/old male diagnosed w/ APS, Factor V Leiden - Heterozygous, and Congenital Protein C Deficiency in 2012. DVT in upper arm is what led to diagnosis.

Medications: Taking Xarelto 20mg/day and Adderall XR 20mg/day for ADD.

Symptoms: Recently developed a prostatitis which responded to antibiotics (Ciprofloxacin 7 days), but other symptoms followed. I am now experiencing fatigue, vertigo, headaches, rashes and bruising. I am a week into these symptoms and they have not improved or worsened - just continued. Fatigue is severe and constant (sleeping 8 hrs and napping approx. 2-3 hrs), vertigo is mild and constant, headaches are mild and come and go - 3 now in a week and last for up to 12 hours, rashes were on back and nose - look like petechiae to me and developed random bruise on foot with not injury or new shoes (bruise does not hurt when pushed or touched).

Doctors visit: My doctor is not sure what to make of the symptoms - having a hard time connecting them. Said there are no drug interactions. Ran labs: CBC, kidney function, liver function, thyroid function and INR level. All came back clean. Said he wants to see if symptoms continue or worsen, if so he might consider rheumatologic conditions - specifically mentioned Lupus.

Questions: Has anyone experienced similar symptoms? Or have any opinions about what, if anything, I could be dealing with? Another symptom I am experiencing that I did not mention to the doctor because I am not sure what to make of it are random traveling pains throughout my body. Not severe, just random sharp pains that seem to be pulsating. They are not constant... maybe 2-5 times a day. For example I had some in my neck on the right front side yesterday. Other areas have been my inner right knee and right calf. Not too disconcerting, but definitely not something I have experienced before.

I would greatly appreciate any advice you might have - thanks!

Regards,

Cody

[MaryF Administrator]

Hi, Firstly welcome, secondly where are you located, as you do need a specialist who understands all of this, It is not unusual to have pain with Hughes Syndrome/APS also a rash called Livedo Reticularis. Some also have platelet problems alongside the Hughes Syndrome/APS, (thromboyctopenia). Also not unusual to have a Thyroid problem which at times can be missed. Another thing, vitally important if your current physician is in testing mode, which it sounds as if they are is to check your levels of D, B and Iron, as these need to be optimum if possible. If in the UK we have a list of recommended specialists. Come back to me and let us know, if not in the UK we will still endeavour to help you where we possibly can. MaryF

[csterling82 in reply to MaryF]

Thank you for the informative reply! This seem like a very close community! I live in the US, South Carolina specifically. I am between hematologists at the moment, mine retired a few months ago. I will research Livedo Reticularis to see if that may be what I have. My platelets were good, thyroid was good, but I do not know about my D, B and iron levels. I will ask about them tomorrow.

Thanks again for the reply - much appreciated!

Regards,

Cody

[MaryF Administrator in reply to csterling82]

Hi do please familiarize yourself with the information on our charity website: hughes-syndrome.org/

Also you may find some help on here: apsaction.org/

Also other members in your area may well respond. MaryF

[GinaD]

How is your c reactive protein test? That is an inflammation marker that MAY point to this, or another autoimmune condition. You know how tired you feel in the few days leading up to the flu or a bad cold? Many of us with autoimmunity feel like that all the time because our immune systems are sapping all the energy to fight these mis-identified threats.

[csterling82 in reply to GinaD]

I do not believe I have had a c reactive protein test taken - I will ask. Thank you for the response! I feel exactly as you describe, like the days leading up to a flu or bad cold.

Really appreciate the response!

Regards,

Cody