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Q I am 44 years old. I have had a
history of autoimmune illness since age 18. First I am hypothyroid,
then 10 years later I was diagnosed with Addison's disease. Again
about 10 years later I began to feel unwell, and was diagnosed
with auto-immune early menopause, 3 years later a lip biopsy
confirmed secondary sjogren's. Bloodwork at that time also diagnosed
Primary Billiary Cirrhosis. Lupus was discussed by my rheumatologist
but never diagnosed.
My life is a balancing act and at times, sometimes for months
I become very ill. (other times, unfortunately much less often,
I am very well) When unwell I feel inflammation throughout my
entire body from my brain, eyes, muscles, joints and GI tract.
When I am unwell I have very red cheeks, neck and chest symptoms
which are not there when I am feeling well. My temperature fluctuates
from hot to cold, my muscles ache and become stiff and have sleep
disturbances. I have been given no clear reason for these flare
ups. I have been told that my auto-immune system is causing the
inflammation. Is this not what lupus is? My latest auto-immune
bloodwork was negative for anti-Ro and anti-Sm and Rh but showed
a high SED rate. That is consistent with other times that show
the SED to be 3 times what it should be, yet inconsistent with
past bloodwork that showed positive anti-RO and anti-SM. Can
antibody tests change or have the tests themselves been incorrect?
At this point I have been told to double my dose of prednisone
from 7.5mg daily (for the Addison's replacement) for at least
one week during a flare up and had been put on hydoxychloroquine
starting at 200mg in Nov/06 daily and recently been told to double
that. I would value your opinion and or recommendation.
A We
don't always understand what causes a flare and many people often
have an undifferentiated connective tissue disease (CTD). Primary
biliary cirrhosis is associated with many CTDs, especially Sjogrens.
Autoantibodies can fluctuate over time. It would be important
to rule out infection when these occur, but if they are always
the same, this would be very unlikely. Even without the most
firm diagnosis (ex overlap with Sjogrens and other connective
tissue diseases), the medication you have been prescribed (plaquenil)
is certainly worth a try.
Q My 22 year old son was diagnosed with SLE about
5 years ago. I would like to know more about stem cell therapy
and talk to someone who has undergone this treatment. I am also
looking for hospitals, universities and clinics that offer stem
cell treatments.
A Most
people with lupus would never be considered for a stem cell transplant.
There are no randomized trials being done in this area. It
is very experimental. However, your son can discuss with his
specialist if something like this would even be remotely considered.
Due to the high morbidity and occassional mortality from stem
cell transplantation, and the availability of promising drugs
to treat severe lupus, the risks of this procedure may be unacceptable
for most at this point in time.
Q I took predinsone
tablets. Five days after taking them my face started to swell.
How long till the puffy face goes away? It has been like this
for 8 days now. I am drinking about 1/2 gallan of distilled
water every day to help flush out my system. Took 4 benadryl
tablets today for the first time. so far no changes
A Some
people get really fast the side effects of prednisone such as
puffy face. Water won't help it and neither will benadryl.
It usually goes away (often weeks to months) after stopping prednisone.
Q I am a 57 year old male who was diagnosed with lupus
in 1987. Over the last couple of years I have gradually had more
difficulty in getting and maintaining an erection.I have been
to a urologist who tried treating me with testosterone for approximately
1 year with no appreciable results. I am and have been taking
medications including Prednisone, Coumadin, Plaquinal, Actenal,
Metoclopramide, Domperidone, Avapro, Nexium, low dose Asprin,
Cholestyramine over a long period of time and have for the last
month been taking Azathioprine. Are there any products on the
market that may help my situation and be safe to take under the
circumstances?
A It
is known (in the scleroderma literature, not studied in lupus
as far as I am aware), that Raynaud's can be associated with
erectile dysfuntion. You are on alot of meds that may suggest
that you have circulatory problems (high lipids, on coumadin,
etc). I would discuss further with your doctor (urologist) if
and specialist for lupus if you would be able to safely use the
drugs marketed for ED.
Q I am a 43 year old
woman who was diagnosed with sjogrens 10 years ago.I have been
taking 200mg of plaquenil twice daily since.I have always had
numbness and tingling in arms,legs and the face but am now experiencing
twitching and burning?cold sensation in legs/face.Could this
be a sjogrens symptom?The twitching seems more pronounced when
my legs are at rest.Would appreciate your thoughts on this.
A Sjogrens
can cause a pure sensory neuropathy that you may be describing
and it could get worse possibly causing the new symptoms. I
am uncertain though what would be causing the twitching. Please
discuss further with your doctor
Q I have symptoms which led me to ask to be tested
for lupus. The symptoms (joint pain, painful mouth sores, red
rash on face, sharp chest pain on deep breath, extreme fatigue)
come and go and aren't all necessarily present at the same time.
I have the requisition to have the blood work done to help see
what may be going on...Presently, though, I am pretty much asymptomatic
(except my face is always red--rosacea?) So my question is: When
is the optimal time to go for the blood tests? Should I hang
on to the requisition and wait for a flare up of joint pain,
and mouth sores? Or if I did have lupus, would there be enough
levels of what the tests are looking for circulating to be picked
up even when I am asymptomatic?
A Usually
with lupus the autoimmune blood tests such as the ANA are elevated,
even without a flare. The inflammation levels on blood tests
may vary with a flare (ESR or CRP), but in general, I would recommend
you just do the tests soon irrespective of a flare or not.
Q My 17 year old duaghter and myself
both have SLE. We are planning a family trip to Cuba in July
of this year. Is it safe for us to have the hepatitis A shot
before we go? She is not any medication, I am on 200 ml of Plaquenil
a day for many years now.
A It is likely quite
safe to get the Hep A shot when you have lupus. It is unlikely
(rare) that you would flare with a vaccination such as Hepatitis
A.
Q I have
been having these problems since 1992. My blood work shows ANA
and a positive Rheumatoid Factor. I can't seem to get to a Doctor
while my joints symptoms are present as they usually last only
3/4 days and I don't know if it will travel to another joint.
I realize some things I do/eat set me into a flare up so I continue
to keep things under control as much as possible. At the moment
things seem to be getting worse. I was taking Mobicox but have
stopped all medication until I get a diagnosis. I don't want
to be taking any medication unnecessarily. Advil, aspirin and
Tylenol do not work well to keep the pain under control, and
icing does not seem to help much either. I can usually deal with
the pain, however the fatigue is immense. Thank you very much
inadvance, for taking the time out to read my e-mail. I look
forward to your response .
A Could
be palindromic rheumatism or an as yet undefined connective tissue
disease. You should be referred again to a rheumatologist.
Q I am a
39 year old female diagnosed with lupus 3 years ago. I have been
taking 10 mg of prednisone and 400 mg of plaquenil daily since.
I also have thyroid disease and take eltroxin. Recently I began
to suffer from dizziness, blurry vision and palpatations and
profuse sweating I also had a couple of episodes of chest pain.
After having a holter monitor test I was diagnosed with arterial
fibrilation and given atenolol. Could the lupus cause such a
thing? My thyroid levels are normal.
A Certainly hyperthyroidism or over replacement of
thyroid medication
would be a cause of atrial fibrillation but is not in this case
due to normal thyroid levels.
There is idiopathic atrial fibrillation (without an underlying
structural or chemical cause). This is likely more common than
atrial fibrillation (a fib) from lupus which is very uncommon
and usually associated with a cardiomyopathy (lupus affecting
the heart). However, if otherwise well, the a fib is treated
and the lupus may not need further added treatment."
Q I am hoping you can give me some direction
for answers. Although the internet is detailed, it doesn't narrow
down to my questions. In early 80's I was diagnosed with SLE.
This involved years of lung infections which never seemed to
go away or never responded to treatment. In early 90's I was
diagnosed with Sjogrens. Now I suffer from bronchiactisis, coupled
with MAI (Microbacterium A Typical) and Aspergellis (Fungus),
both infections are in the lungs.
Is it possible that the Lupus and/or the resulting infections
due to the Lupus triggered the Sjogrens? Is it possible that
the Lupus and/or the resulting infections caused the bronchiactisis?
Is it possible that either of these autoimmune deseases caused
the MAI and/or Aspergellis, or is it more likely to be caused
by the bronchiactisis?
A The bronchiectasis is
from recurrent infections and recurrent infections may be associated
with lupus (immune dysregulation), but Lupus can be associated
with Sjogren's (unrelated to lung infections) The bronchiectasis
allowed for the atypical bacteria to grown in your lungs. However,
most people with recurrent lung infections (that cancause broncheictasis)
do not have lupus.In your case there is an association between
lung infections in past,bronchiectasis and current unusual bug
infections.There is an association of lupus and concomitant Sjogren's
and that isall we can say with certainty.
Q
I found your
website and would like to ask your opinion. I am a 34 y.o. LPN
and mother of 2 boys. After delivering my first son 8 years ago
I began having joint pain, numbness in hands/feet, and fatigue.
I was thought to have RA , like my father, and was placed on
Prednisone. This seemed to aggravate my numbness, and I began
having tourniquet sensations above both knees, and "heavy"
weakness of extremities. Over the years these symptoms continue
and while pregnant with my second son I passed about 7 kidney
stones and had hydronephrosis which resolved. I have GI symptoms
and terrible fatigue. I don't know how much longer I can continue
working and trying to appear "normal". I am exhausted
all of the time. My ANA started at 1:140 and the highest last
year was 1:320, speckled pattern. MRI revealed a significant
Chair malformation and decompression was recommended; I had this
surgery in 2001, but no change in my symptoms and the neurologist
believed there was another "process" going on. I have
Raynaud's in my hands and my legs go numb from any constricted
position or whichever side I lay on at night. Other tests per
rheumatologists reveal no other clues. I definitely feel worse
when under stress or I try to work/shop like I used to. My muscles
will feel "spastic" and twitch for hours afterwards.
I can not take any muscle relaxers or steroids or it seems to
exacerbate my weakness/numbness. I do have frequent headaches
that hurt in the "back" of my head and now I have been
told my hormones are "pre menopausal"; Iam trying to
decide about taking hormones, my mother had breast cancer. My
question is this. I find it hard to believe that at 27 y.o.,
I went from healthy and active and now I can barely get through
a day. I have to take naps and rest up to do the simplest chores.
My only health problem before this was endometriosis. Can you
please give me your
opinion? Can someone have MS without "plaques" on the
MRI; can someone have lupus with no other abnormal lab work than
slightly positive ANA? I am not depressed (which of course is
not to say this change in my life hasn't gotten me down at times)
or under extreme stress. I have a family I have always wanted
and am so tired of not feeling like enjoying my boys. Can you
please give me some advice on what I should do?
A This is not MS (as the MRI would show lesions in
MS patients). A positive ANA is not specific for lupus and many
symptoms you have are not specific for any connective tissue
disease. The neurologist has likely done Nerve Conduction Studies
to see if you have a peripheral neuropathy (which is actually
more common by the symptoms you describe in Sjogrens than in
other connective tissue diseases). Ask the doctors involved in
your care if you may have Sjogren's syndrome (it often has a
positive ANA) and also what can be done about the numbness and
burning you feel and how you can pace yourself to help to manage
the fatigue.
Q My
daughter is 17 and has been seeing a nephrologists yearly for
the last 6 years for Benign Famillial Hematuria and just recently
he has been concerned from her lab work and symptoms, he tells
me something is rumbling and that there is no definite diagnosis
but that it is probably an autoimmune disease. These are her
symptoms: Blood and protein in the urine, vitiligo, rash (hives)
for the last 2 years which is very sensitive to the sun, sore
joints, 2 positive tests for ANA, constant runny nose with sores,
she has red cheeks on occasion but not the typical butterfly
rash, her labs always come back with C-3 being flagged, cant
remember if it is high or low and she has frequent bouts of diarrhea.
From these symptoms would it be accurate for my doctor to suspect
a autoimmune disease such as Lupus or could he be thinking of
something else. I just wish he would tell me what he thinks is
causing the ''rumbling'' he did mention Rheumatoid Arthritis
but said her last test came back negative. Can you help me out,
is there a more definite test that I should be asking for? Or
is this a waiting game?
A This may be a waiting game as many connective tissues
diseases take years (a couple or even more) to add enough symptoms
to make a diagnosis. It is possible she has lupus and you can
ask for the antiDNA and ENA to be ordered if they have not already
been done. In addition, it would be more worrisome if she has
both protein and Red blood cells in her urine together. As long
as she is closely watched, there will be treatment as is indicated
(even if the diagnosis is not fully confirmed). Also there are
some people who have some symptoms of lupus, but never get enough
problems to meet the diagnostic criteria for lupus (ie they are
under the radar screen). I think your doctor is telling your
daughter all that he knows as there is no firm diagnosis. Best
of luck.
Q Could you please read
about my problem and tell me if it`s possible that I have lupus
or any other kind of autoimmune disease. For the last four years
(I`m 25 years old) I`ve been having unexplained eye-conjunctivitises
(the last one was in August) and here`s rheumatologists have
diagnosed me with Sjogren`s syndrome. But this
diagnosis seems rather strange to me since: -I`ve been using
artificial tears only twice a day (when I don`t have
conjunctivitis, otherwise I have to use ophthalmic corticosteroids
and antibiotics), I don`t feel any particular dryness in my mouth
(I can swallow food without drinking) or in any other body`s
membrane; -Dry eye tests(Schirmer, Fluorescein and Rose Bengal)
were NEGATIVE; -Biopsy of the inner lip DID NOT confirm Sjogren`s
syndrome -Since the age of 13 I`ve been having a small but noticeable
redness around my nose which has spreaded in the last month and
the rashes also became itchy (dermathologist diagnosed it with
dermatitis seborrhoicafaciei and prescribed me Oronazol(ketoconazol)
and oral contraceptive pills. |
