Lumps and bumps: Along with the... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Lumps and bumps

Bluma
Bluma

Along with the terrible bruising and the lumps from the Lovenox shots I believe my stomach is quite bloated. Does that sound familiar?

19 Replies
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HollyHeski
HollyHeskiAdministrator

Hi and welcome, I see you've just joined.

Can you confirm that you have been diagnosed with Hughes/APS?

Your stomach being bloated could relate to your injections but could relate to a number of things, how long have you been on levenox and is the bloating a new symptom?

We share our experiences of APS and give support, we are not medical advisors. If you are concerned please put a call through to your GP.

My husband has been on lovenox for the past 10 years and has the bloating along with the bumps from the shots . Hang in there !

When I need to take Clexane, I get horrendous bruising (my tummy turns black) with large ‘egg’ like bumps under the skin; making my tummy sore to the touch and swollen.

I feel for you 💋

silemoran
silemoran in reply to WendyWoo50

Yes I get the bumps to from injections join the club😊

MaryF
MaryFAdministrator

It is important to work out if the bloating is an internal or external issue, please do answer my colleague, regarding if you have a diagnosis for Hughes Syndrome/APS? This enables us to help your more efficiently. MaryF

Bluma
Bluma in reply to MaryF

antiphospholipid syndrome This diagnosis has been very conversational. My doctor hasn’t really talk to me about anything much more than the fact that It is likely contributing to the stroke damage I have

MaryF
MaryFAdministrator in reply to Bluma

You need a referral to a Hughes Syndrome/APS Specialist, not only will it help you but also your GP, let us know, roughly where you are located so we can help with more detail. MaryF

Bluma
Bluma in reply to MaryF

I am in West Orange NJ 07052. My neurologist is at Weill Cornell medical Center in Manhattan. My oncology doctors are at Memorial Sloan Kettering Cancer Center in Manhattan. So why go all over the tri-state area for treatment for different problems that I’m living with.

Wittycjt
Wittycjt in reply to Bluma

From personal experience and being a retired nurse i can tell you most medical people dont know about APS nor how to treat it properly. I learned of it after my strokes and had asked many of my colleagues- most were unaware. That could be why you are having many conversations. Ask specifically if they have experience with other patients with APS.

MaryF
MaryFAdministrator in reply to Bluma

Hi here is a list from the charity, you might be able to find who is nearest you, via these. ghicworld.org/medical-advis... MaryF

Bluma
Bluma in reply to MaryF

What’s the diff? External vs internal?

Bluma
Bluma in reply to Bluma

Again what’s the diff inter vs external bloating?

Bluma
Bluma in reply to MaryF

Do we know what the bloating is from?

antiphospholipid syndrome This diagnosis has been very conversational. My doctor hasn’t really talk to me about anything much more than the fact that It is likely contributing to the stroke damage I have

You need to see a Hemotologist at Weil Cornel I’ve been there and to Sloan a Roth’s street with my husband! My first blood clot was at age 24 in 1978 b4 Hughs syndrome even discovered! In 1982 I had my beloved son Jesse! Was hi risk and got pre eclampsia! When he was 3 months old I had a stroke! My doctor held my hand and said to me, “Debbie You Have something Bizarre and I don’t know what it is! I went on to get several more blood clots in my legs! They called it Phlebitis like my Mom always got at young age too! I was under the care with a hemotologist for almost 15 years with another rare thick blood 🩸 disease called Polycythemia Vera a blood cancer! Went every week for years for phlebotomy! I got a blood clot in my little pinky toe on Christmas Eve Thiught I stubbed it! After a couple of days I saw 2 specialists! They both told me with my 5 purple toes that I had a blockage and I needed an MRA! Did they send me to hospital? No I lost my leg after 4 surgeries to try to save it! They just didn’t get it! It was Christmas week and they were going on vacation no time for me! Well about 10 months later my stupid Hemotologist diagnosed me with APS! Nice of him! I’m sorry for telling u all this, but this is a serious disease and you need to take it seriously! Please get this checked out! Ask questb4 u c any Hemotologist if they even know of the disease! I pray u get the help u deserve! Good Luck and GODSPEED

Bluma
Bluma in reply to Debbweb01

I see kelly Bolton at MSKCC. Hemotology.

Debbweb01
Debbweb01 in reply to Bluma

Great glad ur going Godspeed

Hi Debbie, just want to say how sorry I am for all you’ve gone through. It’s something I can’t begin to imagine 💝

I too am on Lovenox. My hematologist told me to apply hot, moist compresses to the small lumps I get on my abdomen from the injections. This is the longest I've ever been on Lovenox (been using it twice a day since I had my 2nd stroke in March 2019). I used to be on warfarin (Coumadin) for 13 years & used Lovenox only to bridge before or after procedures. Funny you should mention bloating, I noticed that my abdomen was (is) bloated the other day too.

Many of us on this site have family members with other auto-immune disorders. My family has MS, Crohn's, Lupus, etc. I believe my grandmother had APS but before it was named. She had several strokes & 3 miscarriages (one of the hallmarks of APS in women). My APS was discovered during my 1rst attempt at heart surgery to replace my mitral valve. I got nicked in the carotid artery while inserting the line for anesthesia. Docs observed my blood was acting strange, sort of oozing. Ended up getting a hematoma in my neck that had to be removed by a vascular team.

This site is really great and extremely knowledgeable. There are membrs from all over the globe too. We support each other. Welcome!

I'm a special education teacher in Washington DC.

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