TTP/HUS w/ lupus combined

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New Member

Date Joined Dec 2011
Total Posts : 1
   Posted 12/13/2011 7:20 AM (GMT -6)   
I was diagnosed w/lupus and fibromyalgia in1993. Thus
becoming a chronic pain patient within a yr. Then hit
head on by a semi in 99 resulting in left side of body be-
coming almost completely metal from feet to leg and arm
plus 10 day coma and two yrs in rehab and told I'd never
walk again. In spite of poor prognosis am walking with
no assistance today. However, have been labeled a drug
seeking addict even though I have proof of real excruciating
pain. Adding a diagnoses of a very rare blood disease in
mid July this yr , resulting in a total of 31/2 mos in
hospital , requiring blood transfusions, chemotherapy,
Plasmapheresis, constant pain mgmt thru iv, and mega
doses of prednisone starting at 1000 mg a day by IV. Have
been home just over a month and have weaned dose of
Prednisone to 10 mg a day but have 2 months of weaning
To go. Doc warned me that high dose would make me insae
and put me on so much Valium I'm now addicted. But
never told me about possibility of actual withdrawals from
Steroids like a narcotic and all the dangers and pain involved.
I'm now in more pain and more depressed and anxious
than ever all due to high volume of steroids. And since
I wasn't told what to expect with the taper blood pressure
got so out of control had to make visit to ER and Doc there
was who explained why I was feeling this way. I feel cheated
And humiliated because it wouldve only taken 5 min for
My doc to tell me what to expect and how to handle.
Instead all he's done is accuse me of wanting to do
nothing but lie in bed high on drugs and told me I'd never
amount to anything and that I was lying about ALL of my
symptoms. This is a life threatening disease of which only
1200 people in U S are diagnosed with a year. I've come
so close to death with it so many times, I can't remember
now. Point is , I'm not being treated properly by this doc
and don't know what to do since disease is so rare.
Many docs I've asked about it don't even know what it is.
I'm sick of being accused of drug seeking. I don't want
The stuff any more than doc wants to give it to me,
just can't live with the pain right now and pray it'll go away
after I'm done with steroids. From what I have read, the
tapering actually makes pain worse and causes pain
You never had before,ie excruciating headaches that
NEVER go away. Is there anyone who even remotely
can relate to this or has had similar problems with
predisone ? I know I'm not the only one and I know
I'm not crazy, so any input is greatly appreciated.
Thanks, guitarzan0

Veteran Member

Date Joined Nov 2010
Total Posts : 877
   Posted 12/13/2011 11:53 AM (GMT -6)   
I have no input but I would like to say that I am sorry you are in chronic pain and that you are being treated badly.

Have you posted in the chronic pain forum. I bet there is someone there that could help you?

Sorry, forgot to welcome you. Welcome to healing well. Hope to hear more from you. Keep us posted on how you are doing.
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/13/2011 12:00 PM (GMT -6)   
I don't know of anyone who has been on doses of Prednisone that high for very long. Did they tell you that coming off of Prednisone needs to be done *very slowly*? It took me almost 2 years to get from 20 mg to 0 mg.

I don't think we actually become addicted to prednisone, but if it is helping your lupus stay quiet coming off of it will certainly trigger the lupus which might produce pain. I was told if symptoms came back to go backwards on the taper (ie increase a little instead of dropping), wait for the symptoms to disappear, wait a couple more weeks, then try going down by a mg or 2 again.

Hang in there!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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