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Medical Forum / Diseases and Disorders / Lupus / January 2008

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Newly diagnosed - have questions

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Joel - 22 Jan 2008 17:29 GMT
My daughter was just diagnosed with systemic Lupus and the doctor
started her on 40 mg Prednisone per day. He said she would have to be
on it for at least 5 -6 weeks and then Plaquenil. I have a few
questions:

She is taking the Prednisone 20 mg twice a day, when is the best time
of day to take it?

Is 40mg a good dose, or could she get by on less like 20mg?

Is 6 weeks a realistic time frame to start tapering?

Should she have a bone density scan to get a reference since
Prednisone will affect her bone density?

She also has Anemia and the doctor wants her to take 375mg ferrous
sulfate 3 times a day. My understanding is the Anemia could be caused
by Lupus through the Kidneys or Bone Marrow and in such cases Iron
will not help. Shouldn't she have a Ferritin test to determine if Iron
is low?

If she has trouble sleeping from the Prednisone what is the best
approach? The doctor suggested Ambien, Xanax, etc. We ended up with a
prescription for Valium.

I would appreciate any feedback.

Thanks
Shelagh - 22 Jan 2008 18:18 GMT
"Joel"  wrote in message:
My daughter was just diagnosed with systemic Lupus and the doctor started her on 40 mg Prednisone per day. He said she would have to be on it for at least 5 -6 weeks and then Plaquenil.
I have a few questions:

She is taking the Prednisone 20 mg twice a day, when is the best time
of day to take it?
Best time to take pred is first thing in the morning, before 8 AM.... if it is to be one single dose;  with the split dosages she is prescribed then she should take it just before 8 AM and 4 PM
(because they are both the times when our bodies naturally secrete cortisol into our systems from our adrenal glands).

Is 40mg a good dose, or could she get by on less like 20mg?
She could be on 60 mg. or 80 mg. or even 5 or 10 mg... she should take what the doc prescribed as when she gets better or improves symptomatically, her dosage will be tapered down slowly to the next level till she is either off of it or maintained on it at a very low dosage level; ie: 5 mg daily.

Is 6 weeks a realistic time frame to start tapering?
Very realistic as I have tapered as early as 10 days or 1 week even and as long as 3 months... again it is individual and based on lab work and symptoms.

Should she have a bone density scan to get a reference since
Prednisone will affect her bone density?
Depends on the individual again.... her age and her general health over her years of life... if she is osteoporotic I am sure the doc will find the calcium in her blood or if he suspects that the pred may cause it he will likely to a bone density scan after enough time determines the necessity.

She also has Anemia and the doctor wants her to take 375mg ferrous
sulfate 3 times a day. My understanding is the Anemia could be caused
by Lupus through the Kidneys or Bone Marrow and in such cases Iron
will not help. Shouldn't she have a Ferritin test to determine if Iron
is low?
I do question her taking the ferrous sulfate compound and wonder how the doctor came to the conclusion of her anemia dx... do you know how his conclusions were derived?

If she has trouble sleeping from the Prednisone what is the best
approach? The doctor suggested Ambien, Xanax, etc. We ended up with a
prescription for Valium.
She will likely have a hyper active state and need some sedating for a while.... but she will be able to go off it once off the pred.... I am taking Diazepam as needed at night as I take pred daily and find it hypes me up even at a low maintenance level, some days more than others and it is nice to have a med. on hand for those times.

I would appreciate any feedback.
Plaquenil, an antimalarial med like chloroquin I was put on, is an excellent medication for lupus and I think many of our group members are taking it and agree.... I had to go off of it and I miss it terribly for my joint involvement in particular, as well as my skin and fevers;  it kept lupus at bay and since being off it I have been flaring often and badly....needing to take more steroids than I like to take and resting more often as well.. the fatigue is also helped greatly by the antimalarial... it takes a while for it to work but once it has built up to a good level in your blood, it really works well!... just be patient with it as it is not immediate relief as is prednisone and sometimes up to 6 months of time is necessary for the right level to be reached in the blood for symptomatic relief...

I hope this helped you out somewhat;  
just out of curriousity, how old is your daughter?
I have a site with info based on my life with lupus and all the relative problems
at  http://members.shaw.ca/tiderington  
and there is also a page of links to other relevant and helpful sites as well.
GOOD LUCK to you all!
~Shelagh
Joel - 22 Jan 2008 19:22 GMT
Shelagh,

Thanks for responding, your answers are very helpful. I myself have
Addison's Disease and take 25 mg of Hydrocortisone daily (equal to 5mg
pred) so I know something about what steroids do. I don't think a
maintenance dose of 5mg makes much sense, normally the body would
produce about that amount of cortisol on its own. I was really not
wanting her to be on a high dose of steroids but now I realize that is
what is needed to get things under control. Her GP said her labs from
a while ago showed anemia and the Rheumatologist recently ran some
tests and the one I saw her Hematocrit was pretty low at 29. But i
don't see any point in having her take more pills if we don't know the
cause. I don't believe her diet to be deficient in Iron. She is going
to start on Plaquenil but the doctor told us it may take 6 months to
start working.
Nicole - 28 Jan 2008 05:35 GMT
Some people need that small dose of steroids.... while we naturally produce
cortisol, sometimes that small dose is all that's needed... some people are
never able to taper completely off and 1, 2, 5 mg is all they need.  They
need a small dose.

What's the reason she's taking the steroids?  Just for joint pain or is
there organ involvement?
I refuse steroids  unless absolutely necessary... the short and long term
side effects are not worth it to me.  I'll use a Depo Medrol dose pack maybe
once a year if I'm flaring really bad.

As for the anemia, what type of anemia does she have?
Some types- B12 deficiency, folate deficiency, iron deficiency, hemolytic,
hemolytic due to G-6-PD deficiciency, idiopathic aplastic, idiopathic
autoimmune hemolytic, immune hemolytic, megaloblastic, pernicious, secondary
aplastic, sickle cell.

Women are prone to anemia due to menstruation.  I don't have a diet low in
iron but I'm frequently iron deficient.  I've been very anemic despite
taking iron supplements.  At one point, I was taking 3 iron tabs a day to
get my levels back up.

Did the rheumy explain how important a visit to an opthamologist is (not an
optomotrist)?  She needs a baseline exam and then an exam every 6 months.
These are covered under medical insurance not vision.

Nicole

Here's some info that'll help
please go to the Lupus Foundation of America site www.lupus.org and read all
the information they have.  It is the most current information available and
you will learn a lot!

Also, either buy or go to the library and get Dr Daniel Wallace's "The Lupus
Book" 3rd Edition and read it cover to cover.

Dr Wallace explains in layman's terms everything you need to know.... just
as the LFA does.  The LFA also offers a magazine called Lupus Now which is
full of great info.

The Arthritis Foundation www.arthritis.org also has a lot of helpful
information, a magazine Arthritis Today.  There are over 100 forms of
arthritis so there's a lot to learn.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases
offers FREE publications.  Take advantage.  http://catalog.niams.nih.gov/

There is a wonderful lupus booklet which is completely free.  There are many
other pieces of great info also.

Medline: Lupus

offers links to news and resources about the chronic autoimmune disease in
which the immune system, for unknown reasons, becomes hyperactive and
attacks normal tissue.

www.nlm.nih.gov/medlineplus/lupus.html

Glean your information from reliable sites such as those listed above.

You have to be your own health care advocate.  Your doctor is not going to
sit down and educate you in regards to lupus, fibro, etc.  He/she doesn't
have time and most likely doesn't even know where to begin.

Signature

3 of every 10 Americans Know Someone With Lupus
Help find the cure.  www.lupus.org

> Shelagh,
>
[quoted text clipped - 11 lines]
> to start on Plaquenil but the doctor told us it may take 6 months to
> start working.
lascorpia64@gmail.com - 28 Jan 2008 00:06 GMT
> My daughter was just diagnosed with systemic Lupus and the doctor
> started her on 40 mg Prednisone per day. He said she would have to be
[quoted text clipped - 24 lines]
>
> Thanks

I took 80mg of prednisone for awhile.  When she gets tapered off of
it, depends on how well she responds to it.  I am being put on B12 for
anemia and it helps a lot.  Look up anemia on WebMD and it will
probably tell you that there are different causes for anemia  If you
think that her anemia has something to do with her kidneys, they
should do blood tests to determine if she has decreased kidney
function.

For sleeping, I take elavil.  It helps depression, sleeping problems
and muscle pain all three.
It will also help headaches some.  I am curious as to why she has to
wait until she comes off steroids before going on plaquenil. I started
both at the same time. When the Dr started tapering off my prednisone
he upped my plaquenil.
 
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