Questions about how to use the forum?

Visit our new Frequently Asked Questions (FAQs) section.

Welcome, Guest. Please login or register.
Did you miss your activation email?
November 24, 2017, 05:49:51 PM

Login with username, password and session length


You are no longer alone ...

Author Topic: Popping in to say hello  (Read 2942 times)


  • ~ Silver ~
  • *
  • Posts: 82
  • People helped 2
Popping in to say hello
« on: December 22, 2016, 12:05:05 AM »
Haven't been here much since hubby's denial at recon stage. Because of post-junctional failure, he has since gone through an extensive scoliosis and kyphosis correction surgery - he is now fused from T4 to S1 as well as C5 to C7 - surgeon couldn't correct kyphosis to the extent desired because of poor bone quality. After discharge from hospital for that surgery, he dealt with swelling that caused his left foot to ooze fluid - ended up re-admitted for 10 days for fluid overload, hypoalbumenia, cellulitis, and staph infection. Meanwhile, nerve studies and lab work by neurologist led to a diagnosis of CIDP, which is now treated with weekly IVIG infusions. Lots of steroids to counter potential allergic reactions, which means substantial weight gain. Allergic reaction to Enbrel, the third medication and second biologic attempted for treating the Ankylosing. Tried Cimzia after Enbrel, but it seems to weaken the immune system substantially, affecting breathing and inflammation levels. So now he's off the Cimzia. Surgery needed to fuse toe joints in left foot, so no further Ankylosing meds until after the surgery happens. I'm working with the local school district, back in the classroom after a 2-decade absence, so my time on my computer is quite limited.

We just got form letter HA L56, so kicking into gear with rep as she requests up-to-date records. Read through some other posts, gather it could be a helpful sign or not. Not getting hopes up by any means. Still, appreciate the insights I find here. Wishing all a blessed holiday season!


  • -
  • ~ Platinum ~
  • *
  • Posts: 700
  • People helped 33
Re: Popping in to say hello
« Reply #1 on: December 22, 2016, 04:52:38 AM »
It's a wonder at this point he is even able to move.  That is a ton of hardware in his body, I feel so bad for him,  I have enough problems with my 4 level fusion. I will tell you that I met a dancer (customer) at one time and she was fused from too to bottom and driving and walking with a cane,

I wish him a speedy recovery and it is a long road,  very suprised he was given a denial.  What actually is he receiving the infusions for?  I also am receiving 5 to 6 hour infusions monthly for my CVID.  Common Variable Immune Defiency.  If you need any sort of financial help and can explain alittle more PM and I would be glad to share what I know.


  • ~ Silver ~
  • *
  • Posts: 82
  • People helped 2
Re: Popping in to say hello
« Reply #2 on: December 22, 2016, 08:11:56 AM »
CIDP is Chronic Inflammatory Demyelinating's the chronic form of Guillain Barre Syndrome. The body apparently goes overboard in developing antibodies to fight off a sickness, and the excess antibodies attack the myelin sheath. The IVIG gives the antibodies something else to attack. It is apparently a lifelong medical need to go through infusions to mitigate the neuropathy.


If this site has helped you in any way please make a donation towards the running of it by clicking below.

Use Paypal by clicking below


  • Total Posts: 203525
  • Total Topics: 19963
  • Online Today: 75
  • Online Ever: 246
  • (June 25, 2012, 02:04:42 PM)
Users Online
Users: 4
Guests: 47
Total: 51


Prescription Drugs

Prescription Drug Assistance Programs

Please use the pull down menu below to select a prescription drug. 

This will instantly take you to that post in our forum.