I had a similar experience. I used to organize our blood drives at
Roadway/Roberts Express when I found out I couldn't donate because (1) I
took Plaquenil at the time, (2) I had anti-phospholipid syndrome, (3) I had
a 'lupus-like' syndrome, (4) Sjogren's, (5) positive anti-RANA (indicative
of RA but not conclusive). I don't know the medical reasons for the
rejection, but you did GOOD for trying to donate, most people don't.

Candi

On May 23, 3:12 pm, tokat...@gmail.com wrote:

I have SLE and Raynaud's. I asked about giving blood once, after
diagnosis, and was told that they were not concerned about my blood
affecting anyone but about the loss of blood affecting me. Autoimmune
people, particularly those with lupus, may have abnormal sized or
shaped red cells and be prone to suffer from anemia. At one point, I
had bone marrow failure and required two units of packed cells. So
stressing out the already stressed body may not be the best idea.
Linda

On May 23, 2:12 pm, tokat...@gmail.com wrote:

Well, I'm going to give the POV from a pseudo-immunologist.  These
diseases are very complex and we don't know yet what impact giving our
blood to another person might have.  No it isn't "contagious" -
however, your whole* blood could contain immune products that would be
viewed as signals for an infection or disease and could potentially
trigger an immune response in blood recipients.  This is true for any
blood donation. But I think would be all the more a risk when coming
from an AI patient. Without knowing if a person has a genetic
predisposition to AI disease before they get a blood donation and
without a full understanding of what immune components might actually
trigger a response in another person, I think it's a "better safe than
sorry" response as much for the recipient as for us.

There are still questions as to how immunizations might play a role in
autoimmune disease** and immunized blood will carry antibodies to the
various diseases it's been vaccinated for.  Again, I don't know to
what extent these might be present in donated blood, but I suspect it
can't be completely ruled out.  Obviously there is some risk as blood
is tested for viral components such as West Nile and HPV.

We can't forget the meds we take.  Many of them stay in our system for
several weeks (Plaquenil) even if in only small amounts.  Probably not
a big medical risk to a recipient but not zero risk either since some
meds we take might clash with medications they need during a
transfusion.

*Donated blood is often "fractioned" into its components but is also
used "whole" therefore still contains whatever proteins created by the
immune system in the autoimmune process.

**Patients who received stem-cell therapy and remained symptom-free
for a long period of time "re-developed" the disease after getting
their standard vaccines.  I think there were only two cases of this
from the studies done with stem-cell therapy but it's been a long time
and I haven't tracked the progress of the patients.  The other
patients did not renew their vaccines.  I am not blaming vaccines -
it's just that in a person with an autoimmune predisposition, they
become a potential trigger.  As does stress, injury, etc.

I wouldn't want to give my blood to someone, frankly.  I don't want
it, either!  :P

KCat

and an additional note...

Having worked with HIV infected patients, I know people in the medical
profession do not like to make comments that seem negative.  IOW, they
will not (unless they're jerks) tell a potential donor (or an infected
patient) "We don't want your blood, ewwww!"  but will use more
diplomatic reasoning.

Based on that comment - I guess I'm being a brutally honest jerk.  :P
But since I have the disease as well, I think I'm within my rights to
be so in this case.   It would be nice to think that our disease
doesn't impact others negatively, but sometimes it does or could and
we have to accept that on a certain level.

Hi.  I have been subscribed to this newsgroup for a while, but have been too
sick to read or participate in it.  We picked up a spammer on the diabetic
newsgroup that was spamming others that members were familiar with, so I
thought I'd check out those I check in on *wishingly*..... meaning when
health and time permits.  *s*  Wasn't a big or important spammer, but I've
found several interesting topics helpful for myself as I've scanned the
headers.  Guess you've figured this one did.  LOL

I have ***several*** autoimmune diseases, the worst being Myasthenia Gravis.
I'm just out of the hospital after my second IVIG treatment of two weeks
ago, and feel I might have a *few* answers to some of your questions since
my whole life revolves around autoimmune diseases, and has for about 45
years.  However, in addition to having a really bad myasthenic episode, we
are in the process of preparing for the delivery of my hospital bed
tomorrow, which prevents me from getting in depth of our immune systems,
plus tell you a bit about myself........ a must for someone showing their
face for the first time in the diabetic support group.

The diabetic newsgroup has been highly instrumental in saving my life
relevant to diabetes, and have become a wonderful family support group for
me, and my husband, especially most recently.  Just saying this to express
my positive feelings I have for newsgroups like I have found this one seems
to be, and think I may have found some topics we are interested in.

I'll be back, and no, the spammer hasn't come this way.  Maybe I was just
meant to find you all.  Once my bed is up I'll have more time I think, and
look forward to checking back here with you all.

See you all later,
Billie (almost 65 y/o great-grandmother (August) of 2 with a 3rd one on the
way ;-)