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Has anyone tried Cyclosporine with good results?
Enbrel is no longer working for me anymore and my
rheumy reluctantly wants to possibly try cyclosporine
as one last treatment( I have high blood pressure)
before going on round the clock pain meds as the my
only treatment option left. I've been on every other
medicine for this disease and the enbrel worked for 2
months, but now I've had the worst psoriasis and
arthritis flare ever over this past week.
Its getting to the point where just taking the bottle
of Dilaudid would end this disease for good, but I
know better I suppose. Any info would be appreciated.
Thanks
Mike

The question has been asked, is Trimovate another word for Temovate.
Perhaps the most straightforward answer might be, Yes and No... They
are two different topical products, with Trimovate containing a
topical steroid, and additional components for those whose physicians
see a need for those components, whereas Temovate's only (active)
ingredient is the steroid. The similarity in names may reflect that
both--steroid-wise--contain clobetasol. And, as "orinok@..." so
rightly points out, both are potent, and not remotely for ophthalmic
use--intentionally or accidentally.
Frank D.

Hi Everyone,
I want to start by thanking all of you who responded to my distress. There
is no way I can tell you how much your concern meant to me. What I did not
say, was my Internist had 2 possibilities of what was going on with me. One
was Scleroderma (which can be extremely bad) or Sjorgens ( not good) aong
with the PA. It turns out to be confirmed Sjorgens. The Dr. said that it
will probably feel like a combination of strep throat & mumps when it is in
flare, etc. This also has fatigue, joint swelling, muscle pain etc. as part
of it, as well as the PA. I also have a flare of PS#@%$*&^. He increased my
prednisone (which is like a wonder drug for me) and gave me quidelines on how
to help use the medication to deal with all of this. He said he never wants
me to go below 5 mg of prednisone daily. He also instructed that when I have
a major life event e.i. childs wedding; stress; new job: etc. that I can
increase the prednisone to 10mg for a few days to a week to get thru and
enjoy the situation. Then I can wean down again. He also said that I should
carry water with me at all times, and be extremely careful about tooth care,
and regular dental check ups. He actually said that he thought I was
progressing better than he thought I would from my last check up. :0) But
explained the "flare" process, and that It will get better. He also
discussed the importance of getting more rest and better nutrition than I
have been doing (my husband snitched on me!).
But, again, Thank ALL of you for your prayers and concern. It got me thru
until I could see the Dr. and get some tools and advice to work with.
<<<<<Gentle Hugs & Prayers
Carol M.

Just wondering how many of you with PA also have damaged thryroids? Mine quit
before the other signs of PA [only P]. I guess autoimmune stuff can strike most
anything.

Hello! I am taking a drug design class, and last week we learned
about folic acid synthesis and methotrexate, so for anyone
interested I will share this info (I need to learn it for my midterm
anyway!):
Folic acid is essential, but humans can't synthesize it (most
species do), so we must get it through our diets. We actually
synthesize it from a different compound we digest, catalyzed through
a series of enzymes. Some of these enzymes are folate reductases.
Methotrexate interferes with these enzymes so our bodies cannot form
very much folic acid from our diets. This is why we must take the
supplement, which is probably already in its reduced form and
therefore doesn't need the enzymes.
I found it interesting, anyway :o)
Wendy

I was part of a baseball(slow pitch) team last year that was
organized by the company I work for. My PA didn't really effect me
that much(back then) except when I had to run. Anyways I had a
conversation with a buddy from work. I told him I am not sure I can
play beacause of my knees.
His response was "Come on you are the youngest person in the
company ..."
I have told VERY few people at work about my PA. I say that my knees,
and hands are 'BAD', but never saying "I HAVE ARTHRITIS"
I can't stand pity and I can't stand people that say "...you are too
young for that!"
I am battle this disease by myself and I will not let it defeat me.
I would like to play but currently I am between drugs and trying to
get my PA under control.
Has anyone had experience of telling co-workers about PA???
If so how did it go?
Cheers
Shane

A few days ago my husband brought in a love gift from Bath and Body
Works....Soothing Socklets, Moisturizing Gel Ankle Socks. They have a gooey
filling and are to be used with a moisturizer from Bath and Body. However,
I'm using my Psoriasis moisturizer....my feet haven't looked this "normal"
in years!
Unless they come in a larger size, you guys can forget it....my size 8 1/2
is a tight fit. I'm only about 1/2 kidding when I say I'm going to buy
another pair and wear them on my hands when I go to bed.........it would be
my luck for the house to catch fire or have a heart attack or
something...... the EMT's would still be trying to figure out if there was
something kinky that went on when women slept with socks on their hands!
Seriously, I think there is something to these socks that need to be
considered for those of us with cruddy skin......then maybe the Enbrel is
kicking in? One thing for sure, the socks are a heck of a lot cheaper!
liz

The costochondritis has been masking a heart condition - blocked coronary
arteries, which is a contributing factor to the severe pain I have been
experiencing in the chest. This was revealed in the nuclear myocardial
perfusion scans. Now I have to have balloon and stent angiogram to open them.
This cannot be done locally and I have to have it done in a leading coronary
hospital in Brisbane where there is a standby bypass surgical unit. The tube
through a vein in the groin into the heart, will reveal the extent of the
blockages and whether any damage has been done to the actual heart muscle. I
will be in hospital for up to four days, longer if open-heart bypass surgery is
called for. I am awaiting a telephone call as to when I shall be admitted,
hopefully next week as it is a priority case.
I am very, very upset. I know this has nothing to do with PA but please give me
your support and prayers.
Regards, Gordon
[Ed. Note: I'm very sorry to hear that Gordon, but at least now that it's
diagnosed, hopefully they can do something to help. Very best wishes. Ron]

Thanks everyone for the support from my post about my pity party. I have
suffered with depression all my life it seems.
My daughter is doing well, considering she has been through quite a bit. She is
multiply disabled, she cannot walk, talk and many other things. We love her so
much.
She also has P, I think, behind her ear and a few small patches and one finger
nail is pitted.
I think our system in Canada is not the greatest.
Anyway, thanks again for the care and support, it gets tough sometimes.
We do have supports out here and my daughter is now in school full time. So
life should get better.
Naomi

Hi Tiffany, Remicade, IVIG, and Dex are used for autoimmune disorders. The
Lovenox is a blood thinner shot twice a day that helps with positive
antiphospholipid antibodies, very dangerous to a baby, and it also reduces
natural killer cells. The replacement hormones are because I have antibodies
to hormones which can also hurt the baby. I have problems with tnf alpha,
natural killer cells, APA, ATA, and ANA positive, plus I am a DQ alpha type
that tends to get autoimmune illnesses (4.1 4.1) I also just found out my
IGE is sky high, and have to see an allergist tomorrow to start the shots
because my dr thinks that will help to desensitize my immune system so I can
stay pregnant. I must say my reproductive immunologist is the most thorough
dr I have ever met. He helps couples with autoimmune conditions to stop
having miscarriages. My husband is also a 4.1 4.1, one of only 9 couples
that this dr has ever seen with a match of the worst 'tendency to get
autoimmune problem dq alphas'. This means that on top of all the rest, my
body tends not to recognizes my husband's babies as something the immune
system should protect, but rather, something dangerous looking which should
be attacked like a virus or cancer cell. There is a blood test called the
leukocyte antibody detection test, and in women with a non matching husband,
the levels go right up to 100% as soon as she is pregnant. This protects or
shields the baby from the mom's immune system. My body doesn't do that
because my husband's dq type matches mine. So we had to get a special
treatment where they injected white blood cells from him under my forearm
skin in a type of inoculation. My leukocyte antibody levels are now rising
from these shots! Six months ago, I never would have dreamed any of this,
but another dr found out I had autoimmune disorders, and then I found my
reproductive immunologist. It has been a full time job for six months. I
have to take up to 16 doses of stuff every day! But the baby will be worth
it!
xoxo
Kitty
Message: 10
Date: Mon, 03 Mar 2003 15:08:54 -0500
From: pookiegut@...
Subject: Re: Update-Remicade
WOW KITTY, I have never even heard of some of the stuff you mentioned. Does a
lot of the stuff he is doing deal with pregnancy, or is this just something
he would do for ALL arthritis patients? Man, that was a lot of info to
digest! Also, what is Lovenox? Are you using this because you are trying to
get pregnant, or would you be using it anyway?
Tiffany
In a message dated 3/3/2003 11:46:42 AM Eastern Standard Time, cckidsinc
writes:
[Ed. Note: Lovenox and all the rest can be found at: http://www.rxlist.com/
Ron]

I read a recent message that said that too much Tylenol causes liver
damage. I knew that an overdose was very serious but does taking it
within the recommended dosage cause problems?
I come from the UK and use CoCodamol which is paracetamol and
codeine. I think this is the same as Tylenol plus codeine. I take
this in solluble form every four hours four times a day every day
together with 200mg of Celebrex. I used to take double this dose of
Celebrex but had to cut it down due to a stomach ulcer which I take
Losec for.
Can someone tell me if this is a problem? I don't get enough relief
from the Celebrex alone and doctors here seem very lacking in
information about medication.
Thanks
Gill

Hey guys, well all is going well here, just been busy...Everything with the baby
is going great...She is healthy and I am doing good...The C-Section delivery
date is May 14, 2003 I go back for it at 12:00noon that day...It is definately a
girl...Her name is Emalie Ruth Daneen Northam...Hope everyone else is doing
ok...Gillian you better be taking care of yourself...:) Take care everyone,
Love and God Bless, Pam

Hi,
We had our phone consult today with Dr. Beer with some interesting news.
He is switching me to Lovenox since I turned APA+. He said it helps in women
with TNF by reducing the TNF attack on the placenta's attempts to build blood
vessels, and the TNF attack on the DNA. For those reasons it is better than
heparin. I am also ATA+ now and the treatment is to continue my Armour
thyroid and steroids.
He spoke very highly of the use of bovine colostrum, acupuncture, herbs etc.
in patients with autoimmune problems. So I will start the colostrum today!
This is great because my IGF 1 was low with the last mc. He said that
colostrum will help to rebuild IGF 1. He also said that any impact that
Metformin might have on lowering IGF would be outweighed by the great benefit
in ttc and pg by lowering insulin and androgen levels etc. (IGF 1 is very
important to the early growth of the placenta, as well as the continued
growth in later pg.)
My IGE was sky high (allergy measure). IGE is just one of the 18 'firemen'
of TNF alpha. Remicade reduces the TNF. Allergy shots and treatments will
have no negative impact on ttc and pg. The shots will help to desensitize my
overwhelmed immune system, reduce my NK cells and thus help with ttc and pg.
We won't need more LIT unless my cytokine and NK tests turn up poorly with
the next pregnancy. He is confident that my LADs will come up with time. If
I do have bad cytokine and NK results with a + pg test, then we need more
LIT.
The recent mc biopsy shows that my age is not the issue, my immune system is.
They found trophoblast cells, and he said that there were many more
trophoblast cells than actually showed up in the biopsy picture he sent me.
He said ivf etc. would have been a disaster for us. And that we should
continue to ttc naturally. And that finding trophoblast cells was
significant.
My human growth hormone and prolactin levels were normal. My 'new' TNF test
reflect the recent pregnancy. They were not that high after all, but my
reaction to the Remicade (see previous post), and my general symptoms and mc
history reflect high TNF in my tissues. This does not always show up in
blood tests.
My latest NK tests came down a bit from the last one during the January
pg/mc. They were high during the pg. My C3 C4 came back high, which also
shows my whole immune system is geared up to attack right now.
Hopefully, the Remicade, Lovenox, Dexamethasone, replacement hormones,
Metformin, IVIG etc. and a lot of PRAYER will help us get pregnant soon and
this time deliver the baby!
We are hopeful after an exhausting half year of testing and treatments. Dr.
Beer is also the most thorough physician I have ever met!
I hope this helps someone!
xoxo
Kitty

After deciding to take enbrel, I took some tests, and the urinalysis
showed a trace of blood. I wonder if I have to worry about it. If
any info please post.
Thanks
Miri

I have been taking 25 mg of Vioxx per day for the last few months.
It doesn't take away the pain in my knuckle or lower back. Has
anyone had experience using Tylenol and Vioxx?

Hi All,
To all those with PsA and/or RA who are worried about heart disease; I have
recently read a couple of articles about atherosclerosis.
One seems to indicate that Anti TNF alpha drug infliximab may increase the risk
of atherosclerosis whereas Methotrexate may reduce the risk of atherosclerosis.
Here is one of the links, The other link has been archived and I'll forward it
when I return to work.
http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&newsid=85256977
00573E1885256C94007324D9&topabstract=1&u=http://www.springer.at/periodicals/ful
ltxt/00435325/full_2002_114_23_x04.pdf
Editor's note: I doubt this link will work by clicking on it, but if you copy
and paste the entire thing, line-by-line, into your browser it might work. RAH

First off, I hate to hear about your daughter. PA is such a strange
and angry disease that it breaks my heart to hear stories like yours.
I am sure the doc is basing his or her diagnosis on the family
history of Psoriasis with the dad and the joint involvment that your
daugter is experiencing. Hopefully she won't ever have the skin
involvement that really bothers me worse than the PA. I know this is
not really a Psoriasis forum, but as I said, the P hurts me as bad as
the PA. God bless your family. This message board has been a God-send
for me, and I hope it will help you too. Keep us posted and give your
daughter a big hug from us all.
Teresa

Michelle, Group Founder,
I hope I am not too late in forwarding my own message, hoping the surgery is a
success and you are back with us again soon. Hope you receive lots of visitors.
My thoughts and prayers are with you.
Regards, Gordon

Oh, also, when you change your view, there will be little +'s in front of the
emails that have threads. You must click on the + to see the threaded messages.
Linda J

Okay Ron, very cute -- I meant "no symptoms now".
Cheri :-))

Has anyone had iny experience with Toradol IM (this is an injectable
NSAID). I am in t he middle of a major flare up. My
rheumatologists informed me last week that my Remicade dosage is
probably too low and that he would increase it on my next visit. In
the mean time the flare spread from all the joints in my feet to my
hands, wrist, shoulder and jaw. One of the worst (painful) that
I've had in a while. The Lortab (Hydrocodone) that the
Rheumatologist gve me to tie me over to his next available
appointment was not helping at all. I went to the emergency room at
the local hospital this morning and received an injection of
Toradol. There is no narcotic effect with this drug and the relief
occurred in about 1 hour. It has literally reduced swelling and
almost all paint in that length of time. Unfortunately, the
injection is supposed to last only 12 hours. The clock is ticking
and I'll see. Has anyone else had any experience with this drug?
So far it seems like a great way to get immediate relief and still
be able to function mentally.

Hi Cassie,
The primary ingredient of "Daktarin" pressurized foot spray is Miconazole
Nitrate. It used to be on prescription, here, but is now graded "Pharmacy
Medicine" which means that it can only be sold by a pharmacy, on doctor's
recommendation or pharmacist's advice. Bit of a blow when they took it off
prescription because I can no longer get it at subsidized cost.
Regards, Gordon

I'm going to take a couple of months off any activity and see how it
goes if everything is ok then i mights slowly get back into karate.
thank you for all the kind answers. All look afetr yourselves

Hello all,
It has been a while since I have welcomed all the newcomers and I feel badly
about it, so here goes: "WELCOME' We are all glad you have joined us. You
are sure to find fellowship here like nowhere else. Understanding is the
most important thing you will find here in my estimation, and secondly,
information about your conditions.
I started this group because I found that neither were available to me when I
was finally diagnosed after a long, long road of misdiagnoses! Well here we
all are now--let's enjoy!!
Michelle
Group founder

Hi,
I am from wales, Uk am 34 and I've just been diagnosed with PA. I
began to have problems with my second toe on my right foot. as I am
(was) quite active and practising Karate I put it down toan injury.
however it didn't heal. my Doctor was baffled so I went Private.
After MRI, bone scan, Utlra sound there was still no diagnosis
although PA was mentioned on a number of occasions. Finally I had an
operation to clead the toe out and take samples from it. It now
appears most likely that it is PA. I am being sent to a Rheumy.
I don't have any skin problems (yet) and it is confined to one Toe.
But it is so painful that I can't walk on times. I am (was) six
months away form possibly achieving a black belt in karate.
Questions:
will it spread?
will I get skin problems
Will the pain and swelling ever go away
Will I be able to practice karate agqin?
My doctor say that there ave been some recent papers suggesting PA
can be brought on by an injury. I can remember having an injury to
the toe.
Is this correct?
I've obviously got thousand of questions. I've been looking at PA on
the web and I must say that it is getting me depressed.
sorry to ramble on and apologies for spelling
peb

Hi everyone,
Thanks for the welcomes and best wishes! I didn't expect - or
even really want- empathy and/or sympathy by writing. I just wanted
to know if someone could help with info on my situation. The
information that I gave was just so you would know a little bit about
me and where I stand with PA. It is good to know, however, that the
understanding from other people is out there. It definitely does
help you cope! The other question I have is - how do you become more
dependent on other people? I can't stand asking someone to do
something for me! I'm one of those who does everything for myself -
from home improvement projects, to yard care, to cooking and
cleaning. If someone offers to help it's one thing - but, not asking!
Thanks again!
Gary

I believe I read somewhere that there are charitable organisations in Australia,
and maybe in most western nations, who gladly accept unused prescription
medications for distribution to poor third world countries. If I am correct, it
may be worth enquiring.
Regards, Gordon

I've got a project for somebody.......
Although I'm getting better after reading the list for several weeks, there
are acronyms I don't know what they mean.....OTC, MTX, PCP, etc just aren't
in my daily vocabulary and I have really had to strain the brain to figure
some of them out...and a few that I still don't know.
It's a time killer, but doesn't someone want to put together a list that I
could print out for reference when I hit one that I can't figure out? I
sure would appreciate it....and I bet other newbies would too!
Thanks,
Liz
[Ed. Note: Actually Liz, that's already been done - or at least started.
Zenswimmer (I wonder what ever happened to Conrad?) started a list of FAQ's (FAQ
stands for "Frequently Asked Questions" BTW - and BTW stands for "By the Way"
;-) in our database at http://snurl.com/lby I just added the two you asked
about that weren't already there (OTC=Over The Counter and PCP=Primary Care
Physician), and if you'll put together a list of additional ones that aren't
already in our database and email them to me I'll be happy to add them. Ron]

I went to my rheumy on Friday and after discussing my options he
gave me what he called a "pain" shot of Toradol. I have been on MTX
for 12 weeks with absolutley no relief. He upped my MTX to 15 mg
and told me to give it 2 weeks and if I don't get any more relief he
would add Enbrel and change my Vioxx to another NSAID. Hopefully,
the Enbrel works and I can taper off the MTX. I do not get any side-
effects from MTX, whick is nice, but it doesn't work either! The
Toradol sure worked for about 24 hours, but I went right back to the
usual me after the 24 hours. Anybody ever had the toradol injection?

Hello,
I just wanted to vent/share what happened to me at work on Friday before I went
home. As most of you know, I have psoriasis (really bad dry flaky patches of
skin that never goes away) psoriatic arthritis (same as psoriasis but it attacks
my joints and bones) and fibromyalgia. With the dry skin I tend to itch alot,
and when I scatch my skin flakes off and at times I can inadvertently leave
traces of my skin. About a week ago we had two new girls start, one of which is
about to take her LPN liscensure, and they both went to my supervisor and
inquired what I had, if it was contagious (because they had kids and didn't want
their families to catch it) and complained about it. Based upon that, my
supervisor made the reception team leader pull me into an office before I left
on friday to tell me that I needed to be mindful of my skin, and when I'm
sitting at a desk to make sure I clean my skin flakes up and ensure it's a clean
area in case someone else sits there. I'm at a loss. I have dealt with major
stupidity with my skin disease, however this one takes the cake. A soon to be
LPN should know, or at least come to me and ask. If flaky skin bothers her, I
feel sorry for her working in a hospital setting... They are asking me to
control something I have no control over. Sure I can blow the skin flakes off
my desk etc. but no matter how hard I try, it's gonna be there. My body is 80%
covered. I am sending out applications today, and continuing to do so. I no
longer want to work for a company that discriminates against my skin condition,
or is that insensitive. And I can't see why they would want new people working
for them that are that ignorant. Keep in mind I cried for about 30 min. and my
supervisor came looking for me and said "well we just wanted you to be aware of
this in because we won't tolerate someone saying something stupid to you. What
she said conflicts with the way my team leader approached me. Anyways, sorry
for the long post....
Melissa

Has anyone's psoriasis cleared or at least gotten
better with the Enbrel. I've been on it for 7 weeks
now, PA is much better, P is as bad as ever, if not
worse. Has anyone had a similar situation with Enbrel?
Thanks,
Mike

I have a question/dilemma.... I've been on MTX for 5 years now
(currently taking Vioxx as well) and in the past 6 to 8 months it
seems to be working less and side effects bothering me more. Because
of the liver enzymes from my last 2 months of bloodwork my Dr. wanted
me to go off it for a couple weeks than start back on it at a lower
dosage and work my way back up as long as bloodwork comes back ok
pluse they want me to have another liver biopsy (just in case)
although I just had one last year. Ok..here's the thing...I've been
off it a month and although I still have arthritis pain, I feel soooo
much better. The daily fatigued feeling is gone, no nausea or
dizziness, the acid reflux has reduced considerably (just gotta watch
what I eat but day to day is much better), I don't have the bloaty-
swelling feeling, I've started losing weight (I've gained 45 pounds
since I started taking arthritis meds 5 years ago!!) and my mind
seems to be thinking clearer--don't have that spacey 'duh' feeling,
I'm sleeping better and waking up less tired that before--a little
stiffer feeling maybe but I don't feel exhausted when I get up. I
know I don't want to go back on MTX but I know I'm gonna have to take
something or I won't be able to function without pain. I know
there's trial and error involved with switching meds -- ya gotta go
with what works for you -- but any suggestions as to which to try
first?? My Dr & I have talked in the past about life after MTX and
he's suggested trying Arava (can be hard on liver, kidneys &
stomach), plaquenil (did a search on the net and didn't like the list
of side effects either), Azulfidine....I've read through these group
messages about Enbrel, Remicade and some others but I don't know
which one I should agree to try next. I do have psoriasis but not
too bad on elbows, some knuckles and on 1 ankle but I currently use
psorcon ointment daily for that but my arthritis DR said I
should/could go to a dermy doc for maybe something better if I'm not
happy with this stuff. It keeps it in check and patches I had on my
knees disappeared quickly 5 years ago after being diagnosed with P &
PA and started treatment with MTX and using the ointment. Anyways, I
don't want the P to flare up again or the eye condition that led to
my diagnosis and pain/disease wise, I gotta go on something.... ANY
SUGGESTIONS ON WHAT TO TRY NEXT?? I'd appreciate some
feedback/guidance.
THANKS
Cheryl in Ohio

Hi everybody:
Here is a copy of a message I received from a website for a psoriasis
product. Thought you might be interested. Charlene
Your friends at PsoriasisSupport.com are pleased to tell you about an
upcoming Internet event that we think you may find of interest.
Healthtalk Interactive will present a live webcast on Tuesday,
February 4th, starting at 6:30 p.m. Pacific (8:30 p.m. Central, 9:30
p.m. Eastern): "Feeling Good, Living Well: Quality of Life with
Psoriasis." The program features Steven R. Feldman, M.D., Ph.D.,
director of the Psoriasis Treatment Center at Wake Forest University
School of Medicine, Winston-Salem, N.C. and Abby S. Van Voorhees,
M.D., director of the Psoriasis Treatment Center, University of
Pennsylvania Health System.
There are two convenient ways to access this educational event - on
the Internet or on the phone. For more information, or to register in
advance, please visit www.healthtalk.com or call toll free 1-877-890-
6449.
For people with moderate to severe psoriasis, quality of life can be
difficult to achieve. Aside from the daily stress of living with
flaky and itching skin, social interactions and self-esteem can be
deeply affected. Find out helpful coping strategies from psoriasis
experts and learn about new medications that can make a big
difference in your day-to-day quality of life.
Register today to participate in this Internet webcast!
Sponsored through an unrestricted educational grant from
PsoriasisSupport.com.

I went to my primary doctor and told him I wanted an appointment with
a rheumy ASAP. I took some advice from this group and demanded(asked
nicely) for a x-ray on my knees since I have been having major
problem with them recently.
Anyways I got them done.
I read so many stories of people think there bones are being damaged
but really when they get the X-rays there is little to no damage.
I guess I set myself up for a fall when I assumed the same for my x-
ray results...
I just got a call from my the doctors office requesting me to go to a
hostipal for a 'CT'. Whatever that is???
He also bumped up my rhuemy appointment to Tuesday and is also
requesting an appointment with him on Monday.
I think I am in trouble....
The reason why I am posting this,
Does anyone know what a CT is???
Shane