Has anyone had these symptoms?

[lorigood243]

Hi , My name is Lori and I will be 47 tomorrow.  My night mare started when i was 42.

I will try to just state my facts and if you have suggestions on what branch of medicine to try or anything that will give me direction, i would be grateful.  My doctors have basically given up.

I had my gallbadder removed January 7th 2005 they had to do the big incision couldnt do laproscopic.

i spent 6 days in the hospital and was given 5 shots of Lovenox around my belly button. Lovenox is used to prevent blood clots.  I immediately got huge bruises and my abdomen began to swell.  I was told it was normal and would go away.  With each day the swelling increased and the pain increased.  I was discharged and kept going to my surgeon and the ER because the swelling kept growing on the right side of my abdomen.  in 5 days it was up to 20lbs.  then they thought i had cellulitis and started giving me rounds of antibiotics. nothing helped.
February 10th the swelling was up to 30lbs and i couldnt get a deep breath.  i went to th ER again and there was a doctor who said yes i agree with you i have seen this before you are having a reaction to the Lovenox.  Take prednisone and you will be fine.  well im asthmatic and have taken it many times and even had some at home!  So i started wih 50 mgr a day for the first week.  within 12 hours the fluid started to come off!  15lbs gone in 3 days.  i felt So much better.  the next week i was on 40 a day , next week 20 a day and then to 10...thats when the trouble started all over.  as soon as i hit 10mgrs..the swelling started again.  
That began my search in every direction to make the swelling stop.  it is in the fatty tissue, not like pools of water and its not vascular like a heart problem so Lasix doesnt work.  Then in 2006 a plastic surgeon said lets cut it off and maybe that will stop it.  well he cut off 25lbs, but it grew back almost double.
fast forward to now....
I have been seeing the top Rhuematologist at Georgetown Hospital for 2.5 years.  he has been treating me as if i had Panniculitis.  all the meds he has tried hasnt worked which led him to the conclusion a few days ago that it isnt panniculitis.  I just had new MRIs done but the radiologist just says it shows inflammation.  so my dr wants to see the CD himself and then if he doesnt see an area to biposy, then he will send me to Johns Hopkins.  Because of all the swelling on me, it caused a disc in my lower back to herniate badly so I walk bent over with a walker.  I am grateful to still be able to walk but the pain is overwhelming between the back of me and the front of me. The 60lbs of swollen tissue is mostly on the right side.  Its not like a tumor. Its hard to lay down to sleep, it makes me off balance when i walk.  Im terribly fatigued from it all. I called Lovenox when this first happened and they said if i would have called within 24 hours they could have given me the antidote.  Most doctors dont believe that the Lovenox could still be causing the swelling.  I think it damaged my tissue causing something that my body thinks there is an infection and it keeps sending white blood cells to the area to fix it, but theres nothing there to fix!

I have been to
3 Internal medicine doctors
2 Allergists
2 Rheumatologist
1 Dermatologist
John Hopkins Allergy and Immunology dept
1 Gastroenterologist
1 Endocrineologist
1 Neurologist
2 Infectious disease
1 Cardiologist

Countless MRIs and Cat Scans

Thank you for reading, and I welcome your suggestions!
Blessings
Lori

[kmil1999]

She had to have the Lovenox discontinued.  Her sister also had an "allergy" to it and heparin.

Like you said.  For some people the side effects are not good.  How we react to things are very individualistic.  What is important is that the MD's listens to each person.  We know how our bodies react and they should never dismiss us.

Hope your medical journey is going better.
Any updates?
Karen

[lorigood243]

Thank you Karen

did your grandmother have the swelling like i do?  What or who did she go to for help?  Did anything work?
I am SO sorry to hear that she suffered too!

I think there are many many more of us, but we are a toniy percentage compared to al the people that Lovenox works great for them.
Let me know what happened to her.
Thank you
Lori

[kmil1999]

Welcome and Happy Birthday.

I wish I had all the answers for you.  You have been through and continue to go through the wringer!  

I know the doctors told my grandma that she wouldn't have any trouble with the Lovenox too and she had a horrible time.  

Keep fighting for yourself.  Take the history you just wrote to every doctor you go to and make sure they read it.  You have to keep fighting for yourself.

Best of luck.
Keep us posted.  Hopefully, someone more knowledgeable than I will come along and be able to help you out.
Karen

[JenB12]

Lori,

First of all, happy birthday!

I am really really sorry you went though all of that and are still going though this! It sounds like such a nightmare and I feel for you. I wish i had some suggestions for you. Welcome to this forum and I really hope you find some answers and some eventual relief.

Jen