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update, long, and sorry about MIA Nicole in Austin
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| Good morning to you all. I have been very quiet as of late but have
some news and hope to get yur experiences and insight if I may.
I have had to break this email down into spurts of writing as my
fatigue and exhaustion has been beyond manageable the last few weeks.
I personally at this point have Systemic Lupus, Undifferentiated mixed
connective tissue disease, chronic migraines, IBS, Reynauds Phenomenon,
Sgogrens Syndrome, Pericarditis, Auto Immune Excema on my palms,
leissions all over, Chostochondritis, and 2ndary Firbromyalgia with
possible kidney disease, gland disease and vasospasms.
This is a lot I know and to put it in perspective, I take no less then
15 prescription drugs everyday. I see 9 specialists regularly to
include my main specialist a rhumetologist who supervises and
coordinates all of my treatment and other specialists. I see the
following specialists at this time, rhumetology, cardiology,
dermatology, immunology, nuerology, opthamology, cardio/ pulmary,
gasterenterology, nephrology,
One of my biggest hurdles daily or two biggest, I should say are my
pain and my fatigue. My pain is treated by a pain patch (duragesic)
that I wear everyday that delivers a steady dose of strong long acting
pain medication into my system every hour, in fact it delivers 75
micrograms an hour of fentynal. In addition to that medication I use
short acting opiates to control my breakthrough pain of which I usually
use 4 tablets a day in 1/2 pill doses. I also use muscle relaxers and
anti inflammatory medication, Celebrex, as well as steroids everyday to
control my immune system, inflammation and more.
To some I know the pain medication sounds like a great deal and it is
and to others it sounds about right. Please keep in mind that my pain
is great and that I did not start out at the current doses, over time
we have had to increase my medication as my body developed a tolerance
and or pain and symptoms got worse. I actually do not feel medicated as
one might expect, one who does not have experience with chronic pain
anyway. My pain levels are high everyday in fact, I live at a level 7
on average in pain daily. Somedays are better and somedays
unforuntately are worse.
Beyond the pain problem, there is the relentless fatigue,so bone
tired, fevers, joint swelling and pain, stiffness, constantly getting
sick because of the confused immune system, migraines, severely dry
eyes, mouth, skin (I always have a drink with me) chest pains,
shortness of breath, mouth ulcers, skin rashes and conditions, and
much more.
Each day presents its own unique challenges and has to be faced one day
at a time. Planning is difficult for me and my family. We are often
limited by my health but none the less we make the best of each day as
do we all right?!;-).
The bad news for me recently, is from my doctor - they feel that my
lupus has progressed into my kidneys. I will see a nephrologist on the
22nd of this month. I am loosing large amounts of potassium and there
is no reason other then is leaking from my kidneys that my doctor can
find. The only other possible sources of such a progressively low
potassium levels is chemotherapy's or a heavy bleed of which I have had
neither.
Kidney involvement is serious and scary but I would really appreciate
any information you all can share with me about it.
I am always tired and fatigued but the last few weeks it has gotten so
much worse I am nearly to tired to sit here and type this email.
Exhaustion does not begin to describe how I feel at this point and time
and I should mention this is on Provigil (number 18 in prescriptions
currently) for fatigue.
My daughter, 7, is also close to be diagnosed with Lupus herself which
is a great concern. She has for over a year been presenting with many
of the criteria points or symptoms and we will check her counts and ana
again this week.
It is nearly a forgone conclusion by her doctor that Lupus is probable
but not absolutely certain just yet.
Lupus is children is complex because they are still growing and
developing therefore the treatments aren't as cut and dry as the
mainstay treatments for adults. An example of Haley's symptoms is that
she has been experiencing strong leg pains, espcially in one of her
legs that even doses of Tylenol and ibuprofen have not helped. This is
something I will discuss with her doctor this week. I am not sure if we
will try a very mild pain medication as needed or anti inflammatory
drug also or first. We will have a lot of research and learning to do
about juvenile Lupus. I have been unable to make myself do much of it
as of yet because of my fears for my little light of my life and until
we have a solid dx it might add more stress then relieve it.
Do any of you know or have a child with Lupus??
One day at a time again.
Any information you can share is so appreciated.
Warmly,
Nicole C. Austin
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| Nicole H 2004-12-16, 9:24 am |
| Nicole
Wow! You sure are going thru a lot. HUGS!
I'm so sorry to hear of your ongoing problems but to hear of your child (I
have a 7yo girl also), really breaks my heart.
I'm not into holistic medicine but if it were my child, I'd definitely would
check out what Dr Weil (he's a MD who is also into holistic medicine).
There are many vitamins, minerals, etc that help w/inflammation, etc.
Tumeric, omega 3 fatty acids are 2 that I can think of right now.
www.drweil.com
My pain dr has me taking the following vitamins, supplements.
vit e 800 iu
vit c 1000mg twice a day
fish oil 1000 mgs twice a day
multi vitamin- a good one, not something like Centrum. I found one at
Lassen's.
vit b complex sublingual
iron, carbonyl 100mg
calcium 600 mg twice a day
coenzyme q10 150mg
Nicole, if your pain level is still a 7, you need more meds! I use Avinza
and Norco for breakthru. I can take up to 12 Norco a day for breakthru.
For some people, the patch doesn't last 72 hrs... only 48. I know exactly
what you mean when you say you don't feel drugged. Because you use pain
medication to treat your physical pain, your brain uses the med properly.
I've NEVER experienced any euphoria, rush or whatever from any of my
meds.... even tho some drs don't understand how I can function. Yet the dr
doesn't know I'm medicated unless I tell him.
Anyways....
I also use Provigil for fatigue. I've used Adderal before and it was great.
Provigil 200mg is working ok. I make sure to take B12 (it's in the
sublingual vitamin) and that helps some.
I hope you can find a good pediatric rheumatologist for your daughter. As
you know, just because the blood work may show a positive ANA, doesn't mean
she has lupus. The criteria needs to be met and hopefully the drs will
figure out what is wrong.
I'm not a health nut by any means but also check out the microbiotic diet.
I've read a few stories of people being sick and this extremely healthy diet
has helped them a lot.
Take care
Nicole H in CA
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| Shelagh 2004-12-16, 9:24 am |
| <snip>"Nicole H" wrote in message
> Nicole, if your pain level is still a 7, you need more meds! </snip>
Hi Nicole C
I agree with Nicole H about your pain levels.... if you are on the
appropriate level of medication you should not be feeling anymore than a
mild pain level of 2/3 at MOST.... at a 7 your pain is NOT being controlled
adequately...there are things you can take to make it happen and make it
better and I would suggest that you talk to your doctor about lowering that
level! I can't imagine day to day with a level 7 honestly; my pain is well
managed with controlled release tablets and I have breakthrough instant
release tablets as well that I rarely use and that is the way it should be
if the CR drugs are adequately controlling the pain.... JMO but HTH you!
hugs from Shelagh
| |
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| Hi Nicole
It is good to be back and to hear from you! :-)
They seem pretty resonable with me on my meds for pain but I am leary
of asking for more at this time until we know the level of kidney
issues I am dealing with.
My patch script costs $350 a month and the vicodin is another $30 not
to bad can you tell me more about your pain meds and cost?
I think I do need to go up to full pill of provigil and just tried 1/2
because I am huge chicken of new meds.
I have been hearing and reading a bunch of the B12 and I may just give
it a whirl.
I will also look at the docs site you listed, and thank you.
My light of my universe, Haley, has for over a year been presenting
with many of the criteria points or symptoms to be diagnosed with
Lupus. She has fevers that come with and without illness, joint pain
and swelling, fatigue, repeated virus and bugs, face rash, mouth ulcers
and more. We will do her blood work this week all going well and should
know even more then. It is nearly a forgone conclusion by her doctor
that Lupus is probable but not absolutely certain just yet.
Lupus is children is complex because they are still growing and
developing therefore the treatments aren't as cut and dry as the
mainstay treatments for adults. An example of Haley's symptoms is that
she has been experiencing strong leg pains, espcially in one of her
legs that even doses of Tylenol and ibuprofen have not helped. This is
something I will discuss with her doctor this week. I am not sure if we
will try a very mild pain medication as needed or anti inflammatory
drug also or first. We will have a lot of research and learning to do
about juvenile Lupus as I have been unable to make myself do much of it
as of yet because of my fears for my little light of my life and until
we have a solid dx it might add more stress then relieve it.
Since Haley again has her cough and sniffles, and fever that will also
be discussed with her doctor. It might be time to consider antibiotics
which we try to shy away from as often as we can per her doctor. It is
our peditrician's position and ours that you can easily overdo
antibiotics in children- though we always discuss and use when
situation and Haley's health will benefit.
Again it is nice to hear from you Nicole and Shelagh, and good to be
back.
Warmly,
Nicole C.
| |
|
| Shelagh
You know I probably one other reason I am not under better pain control
is that I had a really bad experience with the first and only pain
managment doc / group I saw, really bad. I am no longer seeing those
people who brag on their website as successfully closing 80% of their
disabled patients disablity. It was a horribly upseting situation.
I didn't realize that you all were getting such relief from your
medications. I had hoped and do hope for a 3-4 level daily but just
haven't achieved it yet the lowest has been 5 on a super rare good day.
God I would not know how to act at a level 2 or 3 pain level what joy
and freedom that must bring. Not trying to be dramatic here but
truthfully how wonderful.
I have always wondered if the patch was working right for me, even at
75 mc hr. Obviously not very well.
Warmly,
Nicole C.
| |
|
| In article <1102965389.663695.275960@z14g2000cwz.googlegroups.com>, N
<nrclifton@sbcglobal.net> wrote
[]
>Since Haley again has her cough and sniffles, and fever that will also
>be discussed with her doctor. It might be time to consider antibiotics
>which we try to shy away from as often as we can per her doctor. It is
>our peditrician's position and ours that you can easily overdo
>antibiotics in children- though we always discuss and use when
>situation and Haley's health will benefit.
>
Beware of sulfur-based ones such as Septrin - many lupies are allergic
to it; and not many doctors seem to know that.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
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| ((( Nic )))
We must have all lupies invest in thier own drug Co. Just think of returns
 ))
I have no idea what daily level 7 pain is like. But you do handle it to your
best. That I have learned from your posts.
I was wondering if you daily track your O2 saturation. With pain it is norm
to breath less often and not deep. This causes you to be more draggy , more
pain and foggy. This is only a thought you may wish to check with all your
med. pepole.
Hay Nic , your President only had ten Dr. ok him. You have him beat ))
All of us here do feel your worry for Haley. As Haley changes your thought
family here will listen to all you wish to share.
With her leg pain , like you I think potassium level first.
The other is , does she have cold feet most time. If so have medical check
her femual pulse in BOTH legs to try and rule out any differance of note..
Again this is only me thinking of thingys as you asked.
Bruce On. " Me thinks Nic when you feel crappy you should go after crappie.
To other here that is an insider joke) "
| |
| Nicole H 2004-12-16, 9:24 am |
| Nicole
I don't have to pay cash for my meds. I have health insurance. Even then,
I pay hundreds every month on copays, deductibles, etc but am thankful we've
always had insurance.
If you have to pay cash, ask about methadone. It's a good long lasting
pain med and dirt cheap. Maybe if you explain that you have to pay for your
meds, he'd be willing to rx it. My pain dr rx's it for those who have to
pay cash as the price of medication is outrageous.
Duragesic also has a program for those who can't afford it. Sometimes they
put you on a sliding scale and other times, they pay for it all. Your dr
just has to sign a paper.
Just tell your dr that your current meds aren't covering your pain. I would
never ask for a particular dosage increase or something like that. Maybe
something to the effect, the duragesic helps with some of my pain but my
levels are still really high... is there something we can try or add to the
duragesic? (this would all depend on your drs personality)
Are you having to pay for your Provigil? If so, they have a program too.
Provigil is SO expensive.
I'm taking Avinza which is a 24 hr controlled release of morphine. I use
Norco (10mg hydrocodone/325mg tylenol) for breakthru. I used to take just
the Norco (12 a day, 3 at a time)... I was still having pain and was put on
Avinza. What a difference! I do have a wonderful family physician who
deals w/chronic pain patients. I travel 2 hrs each way once a month to see
him.
I take so many pills, I get tired of it but am willing to try almost
anything to feel better.
Nicole
| |
| Lee Thompson-Herbert 2004-12-16, 9:24 am |
| In article <1102965754.474106.299660@z14g2000cwz.googlegroups.com>,
N <nrclifton@sbcglobal.net> wrote:
>
>God I would not know how to act at a level 2 or 3 pain level what joy
>and freedom that must bring. Not trying to be dramatic here but
>truthfully how wonderful.
>
>I have always wondered if the patch was working right for me, even at
>75 mc hr. Obviously not very well.
Some of us are on additional drugs that aren't normally considered
painkillers, but have additive effects. For example, I'm on Topamax
and I take Baclofen at night to help manage my pain levels. When the
pharmacy had a problem filling my Topamax on time and I had to take half
my normal dose for a couple days, I could really tell the difference.
I lucked out in a manner of speaking and got a diagnosis of overlap
syndrome SLE and rhumatoid arthritis. This means that my insurance will
cover the cost for the biologics which are $$$. Enbrel worked, but not
great. I'm now on Humira, and doing much better. I'm no longer eating
Endocet like candies, just a 1/2 tablet every 4-6 hours and a whole tablet
before I go to bed. I'd love to be able to ditch the painkiller and the
evil prednisone entirely, but I'd settle for just getting the steroid
dose down to something reasonable. The Humira may give me that chance.
Are they still being paranoid about giving the anti-TNFa's to anyone
with just straight SLE? I've seen studies using them for fibromyalgia
with good results, it seems stupid not to at least try the two safer
ones (Enbrel and Humira) for lupus. Treating the underlying condition
almost always helps the pain.
--
Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4
Head Muso, White Rats Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"
| |
| Lee Thompson-Herbert 2004-12-16, 9:24 am |
| In article <1102965389.663695.275960@z14g2000cwz.googlegroups.com>,
N <nrclifton@sbcglobal.net> wrote:
>
>My light of my universe, Haley, has for over a year been presenting
>with many of the criteria points or symptoms to be diagnosed with
>Lupus. She has fevers that come with and without illness, joint pain
>and swelling, fatigue, repeated virus and bugs, face rash, mouth ulcers
>and more. We will do her blood work this week all going well and should
>know even more then. It is nearly a forgone conclusion by her doctor
>that Lupus is probable but not absolutely certain just yet.
I think I was about 11 years old when I first started having symptoms
of lupus. Of course, I'd hit puberty by then, too. Unfortunately for
me, my mother was convinced that I was malingering and that the sunlight
rash was just an extension of all the other allergies and skin problems
I'd had since birth. That and I had some congenital deformities in my
feet and ankles, so it was just assumed that any leg pain I had was from
that. The idiot family doctor told my mother that my knee and wrist pain
was "growing pains." Of course, he also told my mother that the damage
from the ankle deformities would put me in a wheelchair before I was 25.
I'm 36 now, and just finally had to give in and get a wheelchair last year.
So thpppt on that doctor. Up until 2 years ago, I was still teaching
irish dance classes. Double thppt on him.
Your daughter is lucky that you *are* educated and know when something
is really wrong. One thing about childhood autoimmune diseases is that
they often can go into remission. Mine was really bad for a couple years,
then it went back to sleep when I was about 14 and didn't come back until
I was about 20 or 21. And that was with no real treatment at all. And
back then, the only sunblocks were SPF15 and they were all PABA-based
(which we all *now* know is bad bad bad if you already have autoimmune
problems). Your daughter stands a much better chance than I did.
--
Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4
Head Muso, White Rats Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"
| |
|
| Bruce
You are so right we should have a % of the drug companies, and see a
financial return on our dollars.
Level pain at 7 sucks, to be blunt and somewhat rude I suppose.:-( I do
not understand how I can take all this medication, 75 mc/hr duragesic,
muscle relaxers and the vicodin 10/ 500 4 pills a day at 1/2 pill doses
and still feel this bad???? Makes me think the duragesic is not doing
much for me overall.
On the O2 saturation I know you are right because I constantly notice I
am holding my breath, breathing shallow and bracing in pain. THis is
aggravated by my chest pains and shortness of breath from
costchondritis and pericarditis thought I am sure. I have not had a
lung function test yet either and a friend of mine with Celiac did
recently which made me wonder if I wouldn't benefit from such a test. I
am stil due to have a stress test done as it is rare but cardio has
mentioned vasospasms because chest pain and migraines come togerher or
chest pain and shortness of breath is worst with migrane time.
I know my first post was so long it was probably hard to read sorry
folks Bruce you have hit on something though with Haley, I did not
think of postassium for her and her leg pain.
I have had decreasing low potassium levels this year, in fact today I
am staring on the 40 mg a day script, and will have my blood rechecked
at lab while seeing nephrologist for the first time.
I have two huge worries right now, my little girl, and thank you for
your kind support, thoughts, ideas, and words, and seeing the
nephrologist fo the first time myself.
I knew the nephrologist was a eventual happening but I did not expect
to have to see those folks for many years.
Can anyone tell me what to expect from this specialist? I see them on
the 22nd.
I appreciate all thoughts, support, ideas, and advice, I am open to
just about anything to get me and my little one feeling better.
The good news is that the potassium should make this 10 x's worse then
ever fatigue right away per my pharmacist. I mean I just thought I knew
about fatigue until the last 10 or so days.
Gentle days to you all and thank you again. I missed you guys.
Nicole C. (Nic)
| |
|
| Nicole H
It is crazy on the cost of meds, on am on our wonderful Medcicare
system and have no 2ndary insurance at the moment. In fact, last night
I was out of the house for the first time in many days to pick up meds,
and my vicodin script cost went up $15 a month thought my pharmacy is
biling the same amount to medicare?
I will ask doc about methadone and other drugs, as good grief $350 a
month on this one med is really hurting us. The Provigil has the same
price tag, as does the Celebrex, but my rhumey and his AWESOME nurse
are great about getting me samples every month. This is a life and
budget saver big time.
I will check into companies for assistance espcially with Jenssen on
duragesic.
My pharmacy bless them, are also so good about watching the cost of the
drugs for me and always will suggest inexpensive alternatives to me and
doc to keep my cost low. I will ask about the Avinza.
My rhumey's office has taken over my pain treatment at this time as I
had such a bad experience with pain mgmt recently.
On the so many pills note, good grief I am with you I will try almost
anything to feel better and would love to decreae some of the
quantities or drugs all together.
Warmly,
Nic (Nicole C.)
| |
|
| Hi Lee
I take elavil at night 35 to 35 mg to help me sleep and ease pain
during the night. THe pharmacist told me recently ( as I have also had
5 months of waking up and staying up between 1:30 and 5:30 a.m.
nightly) that I need to take the Elavil a couple of hours sooner as it
acts as a booster for the duragesic and will not help me sleep that
way? I tried moving the dose up and it is helping.
I am also due for a sleep study by cardio/pulmanary folks. I suspect
this will be after holidays.
I might sound niave but what is the anti_TNFa's?
I know that when I met for 2nd opinion (per my main rhumey, to pick his
brain with 26 years experience) he mentioned pulling out the bigger
guns for the lupus and that maybe it was time to move on from the
plaqunil?
Sometimes it can feel like a full time job just overseeing your own
healthcare and meds. Anyone else feel this way;-)
Warmly,
Nic (Nicole C.)
| |
|
| Hi Lee
The good news is with Haley's pedictrician is that he does not my
background healthwise and treats me like a partner with Haley's care. I
am so fortunate that he consults with me and listens to my concerns for
her symptoms. We thouroughly even discussed when this all first started
with my little one that she might be mirroring my situation some, and
we are well beyond any of those thoughts now.
I am so sorry you had to endure so much at such a young age, damn those
stubborn docs sometimes. GOOD FOR YOU, for proving him wrong at least
on the timeline - YOU ARE AWESOME. How cool that you taught and enjoy
Irish dance. I am fascinated by it.
I think all to often docs are eager to blame pain in youngsters on
growing pains. This might be the new pain frontier. I know this might
sound weird but last night Haley took her cough med, script, with
hydrocodone in it and it was like having my feel good child back. She
was comfortable, happy and relaxed. To me that says that she is dealing
with even more pain then I thought - my poor baby.
I did not realize the remission rate was so good for juvinille a.i.
diseases YEAH! Haley asked me about that last night. We are carefully
discussing this with her, but not so much that she is terrified of
course.
Gentle hugs to you all.
Nic (nicole c)
| |
| Nicole H 2004-12-16, 9:24 am |
| Nicole
Avinza is very expensive too. There's no generic. It's a triplicate RX so
I wouldn't ask about it. Know what I mean? You don't want the doctor
thinking you want specific drugs when you just want pain relief.
http://www.themedicineprogram.com/
Has information on how to apply for the free/low cost medicine.
I'm wondering why the drs don't give you alternative meds especially since
you have to pay cash. There are other nsaids besides celebrex- even some
easy on the stomach.
I used Adderal before Provigil but there are others that are a lot cheaper.
I'm so glad to hear that you get samples. The price is just outrageous.
Have you shopped around for pharmacies? I'm sure you have but just asking
in case that slipped your mind.
Maybe do a 3 month mail order?
Keep in touch! HUGS
Nicole
"N" <nrclifton@sbcglobal.net> wrote in message
news:1103033301.341539.86400@f14g2000cwb.googlegroups.com...
> Nicole H
>
> It is crazy on the cost of meds, on am on our wonderful Medcicare
> system and have no 2ndary insurance at the moment. In fact, last night
> I was out of the house for the first time in many days to pick up meds,
> and my vicodin script cost went up $15 a month thought my pharmacy is
> biling the same amount to medicare?
>
> I will ask doc about methadone and other drugs, as good grief $350 a
> month on this one med is really hurting us. The Provigil has the same
> price tag, as does the Celebrex, but my rhumey and his AWESOME nurse
> are great about getting me samples every month. This is a life and
> budget saver big time.
>
> I will check into companies for assistance espcially with Jenssen on
> duragesic.
>
> My pharmacy bless them, are also so good about watching the cost of the
> drugs for me and always will suggest inexpensive alternatives to me and
> doc to keep my cost low. I will ask about the Avinza.
>
> My rhumey's office has taken over my pain treatment at this time as I
> had such a bad experience with pain mgmt recently.
>
> On the so many pills note, good grief I am with you I will try almost
> anything to feel better and would love to decreae some of the
> quantities or drugs all together.
>
> Warmly,
> Nic (Nicole C.)
>
| |
| Lee Thompson-Herbert 2004-12-16, 9:24 am |
| In article <1103033679.956912.123590@c13g2000cwb.googlegroups.com>,
N <nrclifton@sbcglobal.net> wrote:
>
>I take elavil at night 35 to 35 mg to help me sleep and ease pain
>during the night. THe pharmacist told me recently ( as I have also had
>5 months of waking up and staying up between 1:30 and 5:30 a.m.
>nightly) that I need to take the Elavil a couple of hours sooner as it
>acts as a booster for the duragesic and will not help me sleep that
>way? I tried moving the dose up and it is helping.
Ah. Okay, I gave up on Elavil a couple years ago. It didn't help me
at all. I took Neurontin for about a year and it helped, but the side
effects eventually got to me and we switched to Topamax. Both those
drugs should be prescribed by a neurologist who has experience with them.
>I might sound niave but what is the anti_TNFa's?
anti-Tumor Necrosis Factor alpha. The newest of the big guns, they're
biologics. Monoclonal antibodies, which means they're hideously expensive
and at least for a while, the supply was extremely limited as well. The
three on the market right now are Remecaid (given by IV every 6 weeks, must
be taken with methotrexate), Enbrel (given as an injection either twice a
week or one larger injection once a week), and Humira (given as an injection
every two weeks when taken with methotrexate, otherwise given once a week).
All three work in similar ways, but if you don't have luck with one,
another may work for you. Humira seems to work much better for me than
Enbrel did. There was a caution when anti-TNFa's first came out about
some patients developing lupus-like symptoms and autoantibodies. Remecaid
seems to be the biggest culprit for that, which is why it must be given
with either MTX or Arava. But I'm pretty sure that both Enbrel and Humira
have been used for lupus since then. It's certainly been used in patients
like me who have overlap syndrome.
>I know that when I met for 2nd opinion (per my main rhumey, to pick his
>brain with 26 years experience) he mentioned pulling out the bigger
>guns for the lupus and that maybe it was time to move on from the
>plaqunil?
Oh dear. Yes, if you're having organ damage, it's way past time to ramp
of the DMARDs to something stronger than Plaquenil. The next most common
thing to try is what's called triple therapy. That's usually MTX, Arava
and sulfasalazine (Azulfidine). I was on that for a while, but the MTX
made me extremely ill. That's when we went to Enbrel. If you actually
have kidney damage, your RD may want to go to something like Cytoxan or
Immuran to halt the damage.
>Sometimes it can feel like a full time job just overseeing your own
>healthcare and meds. Anyone else feel this way;-)
You better believe it. I at least have the advantage of having been a
med student before I got so ill I had to drop out of school. My specialists
love me, because we can actually talk about treatment options and what the
latest research papers say. It's probably why I've managed to survive as
well as I have. When I first became ill and was too exhausted and in pain
to think clearly, the clinic doctors nearly killed me a couple times out of
ignorance and carelessness. Being the squeaky wheel is what's gotten me
my current team of competent doctors.
--
Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4
Head Muso, White Rats Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"
| |
| Nicole H 2004-12-16, 9:24 am |
| Yep, Enbrel, Humira and Remicade all have been used in severe lupus.
.. There was a caution when anti-TNFa's first came out about
> some patients developing lupus-like symptoms and autoantibodies. Remecaid
> seems to be the biggest culprit for that, which is why it must be given
> with either MTX or Arava. But I'm pretty sure that both Enbrel and Humira
> have been used for lupus since then. It's certainly been used in patients
> like me who have overlap syndrome.
>
| |
|
| Lee Thompson-Herbert wrote:
> In article <1102965389.663695.275960@z14g2000cwz.googlegroups.com>,
> N <nrclifton@sbcglobal.net> wrote:
>
>
>
> I think I was about 11 years old when I first started having symptoms
> of lupus. Of course, I'd hit puberty by then, too. Unfortunately for
> me, my mother was convinced that I was malingering and that the sunlight
> rash was just an extension of all the other allergies and skin problems
> I'd had since birth. That and I had some congenital deformities in my
> feet and ankles, so it was just assumed that any leg pain I had was from
> that. The idiot family doctor told my mother that my knee and wrist pain
> was "growing pains." Of course, he also told my mother that the damage
> from the ankle deformities would put me in a wheelchair before I was 25.
>
> I'm 36 now, and just finally had to give in and get a wheelchair last year.
> So thpppt on that doctor. Up until 2 years ago, I was still teaching
> irish dance classes. Double thppt on him.
>
> Your daughter is lucky that you *are* educated and know when something
> is really wrong. One thing about childhood autoimmune diseases is that
> they often can go into remission. Mine was really bad for a couple years,
> then it went back to sleep when I was about 14 and didn't come back until
> I was about 20 or 21. And that was with no real treatment at all. And
> back then, the only sunblocks were SPF15 and they were all PABA-based
> (which we all *now* know is bad bad bad if you already have autoimmune
> problems). Your daughter stands a much better chance than I did.
>
My daughter has had arthritis since before she could talk but the
doctors kept saying growing pains even though a blood test when she was
3 showed a high sed rate.
I was initially diagnosed as having scleroderma w/ features of lupus. My
rheumatologist now says no sclero, *just* lupus (on top of all the
other stuff I have, but which isn't half the problems you have).
Makes me think of the old joke "What do you call somebody who graduated
at the bottom of their class from medical school?" "Doctor."
Nell
| |
|
| Nell
I have always said and felt that each of us has our own challenges and
pains that are HUGE to us because, well, it is happening to us. We all
have such a full plate and it is immensly helpful and warming to know
such strong, kind, and supportive people.
I am throwing all my energy today into my daughters classroom holiday
party. I am the room mom (not such a great idea this year) and have so
much to do. Will check in later.
Thank you all, and Nell thank you for the laugh in your last line.
Nic
| |
|
| I am on around 20 myself and have long since given up on trying to list my
infirmities. Illnesses, that is. And it takes me almost an hour just to
prepare my meds for a week. I keep them in a big c-thru box. They have
since outgrown all the ziplock bags.
Hard to tote an oxygen making machine around too, but then that is at night.
Thing is, no matter how sick I get, I can usually find someone around who I
feel has it rougher then me, cries more tears then I do and has let support
then I. Therefore, I consider myself pretty well of.
I feel better when I help others. It reminds me I still have a purpose; a
value. I think sometimes, if it were not for others, who would I be and
worse, where would i be. People are my lifeline. My devotion. My love.
People are the best of me.
Anyways Nicole, hang in there.
I find if I care more about other people, then the less i focus on myself.
ANd my goodness, I love the smiles. Would you mind packaging up one of them
hugs from the 7 year old and mailing it my way for the holidays? This is
the most priceless gift of all, and certainly the greatest medicine!
Happy Blessed Holidays with Mucho Navidad!
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*
> Good morning to you all. I have been very quiet as of late but have
> some news and hope to get yur experiences and insight if I may.
>
> I have had to break this email down into spurts of writing as my
> fatigue and exhaustion has been beyond manageable the last few weeks.
> I personally at this point have Systemic Lupus, Undifferentiated mixed
> connective tissue disease, chronic migraines, IBS, Reynauds Phenomenon,
> Sgogrens Syndrome, Pericarditis, Auto Immune Excema on my palms,
> leissions all over, Chostochondritis, and 2ndary Firbromyalgia with
> possible kidney disease, gland disease and vasospasms.
>
> This is a lot I know and to put it in perspective, I take no less then
> 15 prescription drugs everyday. I see 9 specialists regularly to
> include my main specialist a rhumetologist who supervises and
> coordinates all of my treatment and other specialists. I see the
> following specialists at this time, rhumetology, cardiology,
> dermatology, immunology, nuerology, opthamology, cardio/ pulmary,
> gasterenterology, nephrology,
>
> One of my biggest hurdles daily or two biggest, I should say are my
> pain and my fatigue. My pain is treated by a pain patch (duragesic)
> that I wear everyday that delivers a steady dose of strong long acting
> pain medication into my system every hour, in fact it delivers 75
> micrograms an hour of fentynal. In addition to that medication I use
> short acting opiates to control my breakthrough pain of which I usually
> use 4 tablets a day in 1/2 pill doses. I also use muscle relaxers and
> anti inflammatory medication, Celebrex, as well as steroids everyday to
> control my immune system, inflammation and more.
>
> To some I know the pain medication sounds like a great deal and it is
> and to others it sounds about right. Please keep in mind that my pain
> is great and that I did not start out at the current doses, over time
> we have had to increase my medication as my body developed a tolerance
> and or pain and symptoms got worse. I actually do not feel medicated as
> one might expect, one who does not have experience with chronic pain
> anyway. My pain levels are high everyday in fact, I live at a level 7
> on average in pain daily. Somedays are better and somedays
> unforuntately are worse.
>
> Beyond the pain problem, there is the relentless fatigue,so bone
> tired, fevers, joint swelling and pain, stiffness, constantly getting
> sick because of the confused immune system, migraines, severely dry
> eyes, mouth, skin (I always have a drink with me) chest pains,
> shortness of breath, mouth ulcers, skin rashes and conditions, and
> much more.
>
> Each day presents its own unique challenges and has to be faced one day
> at a time. Planning is difficult for me and my family. We are often
> limited by my health but none the less we make the best of each day as
> do we all right?!;-).
>
> The bad news for me recently, is from my doctor - they feel that my
> lupus has progressed into my kidneys. I will see a nephrologist on the
> 22nd of this month. I am loosing large amounts of potassium and there
> is no reason other then is leaking from my kidneys that my doctor can
> find. The only other possible sources of such a progressively low
> potassium levels is chemotherapy's or a heavy bleed of which I have had
> neither.
>
> Kidney involvement is serious and scary but I would really appreciate
> any information you all can share with me about it.
>
> I am always tired and fatigued but the last few weeks it has gotten so
> much worse I am nearly to tired to sit here and type this email.
> Exhaustion does not begin to describe how I feel at this point and time
> and I should mention this is on Provigil (number 18 in prescriptions
> currently) for fatigue.
>
> My daughter, 7, is also close to be diagnosed with Lupus herself which
> is a great concern. She has for over a year been presenting with many
> of the criteria points or symptoms and we will check her counts and ana
> again this week.
>
> It is nearly a forgone conclusion by her doctor that Lupus is probable
> but not absolutely certain just yet.
>
> Lupus is children is complex because they are still growing and
> developing therefore the treatments aren't as cut and dry as the
> mainstay treatments for adults. An example of Haley's symptoms is that
> she has been experiencing strong leg pains, espcially in one of her
> legs that even doses of Tylenol and ibuprofen have not helped. This is
> something I will discuss with her doctor this week. I am not sure if we
> will try a very mild pain medication as needed or anti inflammatory
> drug also or first. We will have a lot of research and learning to do
> about juvenile Lupus. I have been unable to make myself do much of it
> as of yet because of my fears for my little light of my life and until
> we have a solid dx it might add more stress then relieve it.
>
>
> Do any of you know or have a child with Lupus??
>
> One day at a time again.
>
> Any information you can share is so appreciated.
> Warmly,
> Nicole C. Austin
>
| |
| cloud 2004-12-16, 11:10 am |
| PS.. I had one of them sleep studies done. Could not sleep well at all. The
Sleep Therapist said I sleep too much. I wound up on oxygen at night. I
was borderline when the respitory therapist did a test where they monitored
my oxygen levels when I slept. My low was either 74 or 77. Now I sleep
good at night with Mr. O-Machine. Some doctors barely wink at a person's
medical chart. They look at the "now" test results. No one ever looked at
my chest x-ray to even see if I had a chest.
Oh, and i DO INDEED have a chest!
A young lady wrote to another support group I am on. It is a Yahoo group
and that is where my main hang-out is. I generally will not quote but this
has bugged me... or perhaps it's the heart-crunch of the holiday season at
hand. Nonetheless, I quote from her:
"I got my son overnight tonight. He's been in foster care because social
services doesn't think I can care for him because of my medical problems. I
know I will adjust to taking care of them both...today I was exhausted that
I ended up crashing at 8pm after I put the kids down. I know I"m going to
be sore in the morning when I wake up totally but I'll be happy because
I'll be waking up when he wakes up...which makes me happy."
I can not fathom for one moment why social services would not find more help
for this woman. Not only does this women need her children, her children
need their mom.
God Bless the Child.
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*
> Good morning to you all. I have been very quiet as of late but have
> some news and hope to get yur experiences and insight if I may.
>
> I have had to break this email down into spurts of writing as my
> fatigue and exhaustion has been beyond manageable the last few weeks.
> I personally at this point have Systemic Lupus, Undifferentiated mixed
> connective tissue disease, chronic migraines, IBS, Reynauds Phenomenon,
> Sgogrens Syndrome, Pericarditis, Auto Immune Excema on my palms,
> leissions all over, Chostochondritis, and 2ndary Firbromyalgia with
> possible kidney disease, gland disease and vasospasms.
>
> This is a lot I know and to put it in perspective, I take no less then
> 15 prescription drugs everyday. I see 9 specialists regularly to
> include my main specialist a rhumetologist who supervises and
> coordinates all of my treatment and other specialists. I see the
> following specialists at this time, rhumetology, cardiology,
> dermatology, immunology, nuerology, opthamology, cardio/ pulmary,
> gasterenterology, nephrology,
>
> One of my biggest hurdles daily or two biggest, I should say are my
> pain and my fatigue. My pain is treated by a pain patch (duragesic)
> that I wear everyday that delivers a steady dose of strong long acting
> pain medication into my system every hour, in fact it delivers 75
> micrograms an hour of fentynal. In addition to that medication I use
> short acting opiates to control my breakthrough pain of which I usually
> use 4 tablets a day in 1/2 pill doses. I also use muscle relaxers and
> anti inflammatory medication, Celebrex, as well as steroids everyday to
> control my immune system, inflammation and more.
>
> To some I know the pain medication sounds like a great deal and it is
> and to others it sounds about right. Please keep in mind that my pain
> is great and that I did not start out at the current doses, over time
> we have had to increase my medication as my body developed a tolerance
> and or pain and symptoms got worse. I actually do not feel medicated as
> one might expect, one who does not have experience with chronic pain
> anyway. My pain levels are high everyday in fact, I live at a level 7
> on average in pain daily. Somedays are better and somedays
> unforuntately are worse.
>
> Beyond the pain problem, there is the relentless fatigue,so bone
> tired, fevers, joint swelling and pain, stiffness, constantly getting
> sick because of the confused immune system, migraines, severely dry
> eyes, mouth, skin (I always have a drink with me) chest pains,
> shortness of breath, mouth ulcers, skin rashes and conditions, and
> much more.
>
> Each day presents its own unique challenges and has to be faced one day
> at a time. Planning is difficult for me and my family. We are often
> limited by my health but none the less we make the best of each day as
> do we all right?!;-).
>
> The bad news for me recently, is from my doctor - they feel that my
> lupus has progressed into my kidneys. I will see a nephrologist on the
> 22nd of this month. I am loosing large amounts of potassium and there
> is no reason other then is leaking from my kidneys that my doctor can
> find. The only other possible sources of such a progressively low
> potassium levels is chemotherapy's or a heavy bleed of which I have had
> neither.
>
> Kidney involvement is serious and scary but I would really appreciate
> any information you all can share with me about it.
>
> I am always tired and fatigued but the last few weeks it has gotten so
> much worse I am nearly to tired to sit here and type this email.
> Exhaustion does not begin to describe how I feel at this point and time
> and I should mention this is on Provigil (number 18 in prescriptions
> currently) for fatigue.
>
> My daughter, 7, is also close to be diagnosed with Lupus herself which
> is a great concern. She has for over a year been presenting with many
> of the criteria points or symptoms and we will check her counts and ana
> again this week.
>
> It is nearly a forgone conclusion by her doctor that Lupus is probable
> but not absolutely certain just yet.
>
> Lupus is children is complex because they are still growing and
> developing therefore the treatments aren't as cut and dry as the
> mainstay treatments for adults. An example of Haley's symptoms is that
> she has been experiencing strong leg pains, espcially in one of her
> legs that even doses of Tylenol and ibuprofen have not helped. This is
> something I will discuss with her doctor this week. I am not sure if we
> will try a very mild pain medication as needed or anti inflammatory
> drug also or first. We will have a lot of research and learning to do
> about juvenile Lupus. I have been unable to make myself do much of it
> as of yet because of my fears for my little light of my life and until
> we have a solid dx it might add more stress then relieve it.
>
>
> Do any of you know or have a child with Lupus??
>
> One day at a time again.
>
> Any information you can share is so appreciated.
> Warmly,
> Nicole C. Austin
>
|
| |
|
|