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Author Topic: corticosteroids? CIDP  (Read 1837 times)

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Offline mikeyb39

  • Member
  • Posts: 980
corticosteroids? CIDP
« on: November 24, 2012, 03:46:24 PM »
Hi all,
Has anyone taken corticosteroids or any immunogloblin before?  My Neurologist seems to think i possily have chronic Inflammation demyleination polyneuropathy.  On my next visit he may want to setup an appointment for a lumbar puncture so they can see what the protein looks like in my CSF.

The reason I ask about corticosteriods is because ive heard they can have lots of side-effects such as weight gain, also can have an affect on you immune system itself.  Are they long term medications?

Can anyone give any thoughts about this?  He thinks that I have chronic inflammation due to the fact that my neuropathy is relapsing it gets worse for two weeks, then it gets back to  some normalcy for awhile.  symptoms are similar to MS.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline JJ80909

  • Member
  • Posts: 21
  • April 1, 2010
Re: corticosteroids? CIDP
« Reply #1 on: November 25, 2012, 10:33:11 PM »
I was diagnosed with primary hypo-pituitarism last June and started Cortef (hydrocortisone) -- I had already been on testosterone therapy for about a year.  I began seeing an Endocrinologist last June.

First, the testosterone is still not right - my levels have been generally under 190 for two years now - both on changing doses of AndroGel, and now the injections.  For my adrenals, I was way low, which led to the MRI (no tumor), the diagnosis of hypo-pituitarism. 

I started hydrocortisone therapy, and as it turned out, too high of a dose as I developed Cushings syndrome.  This month my dose was reduced - my next bloodwork for both steroids is in January.  I add this since I am on two hormone therapy regimens now, plus HAART.

So, yes -- one of the cortisone side effects I am experiencing is weight gain - it sucks to say the least.  Acne too, fatigue, lethargy, and depression also.  The weight gain and acne began with the hydrocortisone meds.

What is one side effect to the next on my steroid therapy, i don't know yet, and I hope my Endocrinologist can figure it out soon. 

My Endocrinologist thinks it is related to HAART, my Infectious Disease Doc says it is not.  I am on Truvada, Norvir and Prezista.

I have not been on immunoglobin (too my knowledge).  I have definitely experienced the weight gain side effect to my dismay.  Those side effects were not immediate, but not realized until I had been under therapy for a few months.

For the hydrocortisone, I've been told I'll be on this med also for life.  If you can take it for a short term to recover, I'd do it, and watch my diet for the "bad" carbs and alcohol intake (worthless calories.)  Any weight gain or side effects are easily recoverable if you are on on corticosteroids for the short term -- just my opinion of course. I am struggling with the long-term balance right now -- the belly-fat weight gain seems to have happened overnight.
I wish the best -- listen to your Docs, but also continue do your own research.  Everyone has a different experience/outcome. 
April 1, 2010: Confirmed Poz
March 2010:  VL at 217,455
May 2010:  CD4 at 190, waiting genome testing
May 2010: Started Bactrim and Atripla
July 2010:  CD4 at 270; VL is undetectable
Nov 2010:  CD4 at 245; VL is UD
Nov 2010:  Switched from Atripla to Truvada, Prezista and Novair
Jan 2011:  CD4 at 294; VL is UD


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