Dear Michelle:
I have great joy receiving the support of your kindly words. Next Saturday
my son will take the first dose of Methotrexate. The experiences you
transmitted in your message certainly will help us, in our first steps
fighting against the disease.
We live in Belo Horizonte, Brazil. Here we have a competent medical
assistance and I hope we will win this battle.
Thank you for the encouraging words.
Eduardo.
I was at the dermatologist yesterday and he has suggested that I get as much
sunshine as possible, just one problem, I HATE the sun and heat,, so he
suggested that I get a UV lamp to use on the affected areas.... Now I am
sure he said a UVB lamp but then someone told me an UVA sort.. which is the
correct one and do they help before I lash out on one.. Thanks so much
Connie Davis BTW My dermie is retiring on July and we are getting a new
younger more up to date version so perhaps he can help me even further.
I asked my "old" dermie what I could do to relieve the pain from the PA and
he said there is NOTHING to help so roll on when the new chappy arrives.
Hopefully he will be more aware of whats happening in the treatments
departments. Hope that each of you are feeling better and that the pain
tomorrow is less than todays!!
Firstly
Thank you Lisa for the info about the podotherapist. I do attend one and she
has been very kind and helpful and asked what I was doing to eliviate the
scaling...well I told her that I was slopping the ointment on and then
wrapping the offending appendage in cling wrap or a plastic bag twice a week
and I was able to wash the majority of the dead scales off.
I had actually been doing something RIGHT for a change!!! She told me that I
was doing the right treatment to soften the dead build up........ and then
giving the feet and hands a good "soft" scrub to remove the offending skin.
It does help rid the dead skin cells, and although I shall never win
"Prettiest Feet" at least they are looking better than they have done for a
long time.
As for my hands, the joints in my fingers are very deformed and it seems
that when I have a bad flare up of the psoriasis then not long after another
"lump" comes up, I don't know if there is a connection but since the
psoriasis started my fingers and toes have become more deformed at a quicker
rate.
I have an appointment with the dermie on 4/28 and am going to ask for some
other treatment because this has gone on long enough, I despise the raised
wheals which are scabbed over on my arm and leg, and wonder if these will
ever disappear or are they scar tissue.
The other thing is I have been having a terrible time with depression. I
have tried to bring myself out of it, but it is difficult at times, never
mind that is the least of the problems. The pain from my hips and knees is
but life goes on.........
Take care each of you and thanks for being here for me to rant on....
Regards, Connie
hi how are you i having been to well i fell of my steps. i did alot of damage. i
am going for two operations. one is my back the next one is female problems.
hope to hear form you soon. bunnylane@...
hi how are you. hoping your well. i have not been writing cause i was not well.
i took a bad fall. it didnt help me at all thing got bad . i am losing bone
loss. i might have to go in hospital to get operation. first i am doing a mri on
4-13-99. i am going to ob doctor to remove my female ovaries and uters o well i
can live with out thaT . i see the doctor on 4-20-99 so first taht operation
and then what ever . THE DOCTOR WANT TO GIVE ME SHOTS IN MY BACK AND KNEE OUCH I
DONT LIKE THINKING ABVOUT IT I SEE WHAT HE SAY ON THE 4-29-99 TAKE CARE OF
YOURSELF AND WRITE TO ME PLEASE BUNNYLANE @EASTLINK.NET
Hi everyone,
I am doing well on the Arava with the Prilosec and Tagamet on board. I am no
longer taking steroids or pain meds (for the last week that is ). The only
big problem I am now having is severe fatigue.
It will be interesting to see my blood tests this month. Maybe the Arava is
affecting my red blood cells. Has anyone else had that side effect?
Michelle
When I knock my wrist it swells until the bones seem to be free
floating. What kind of damage can/is occuring? I usually try to wear a
brace until the swelling goes back down and baby the wrist. The wrist
gets swollen and is hot to the touch at times with reddness over where
the tendon that has given me the most problem in the wrist area is
located.
I started using Patanol drops and have slept thru the night since. Are
the drops soothing the itchy, gritty,runny and swollen eyes such that it
is not interfering with REM sleep and I sleep better? I thought it was
pain or side effects of meds that had me getting up every night. What a
relief.
Have a wonderful weekend. We have been working a little in the yard.
Take care,
Pat B
http://www.themoonlitroad.com/
for storytelling by storytellers or you can read the stories yourself
Jon -
One of my early MDs would love to have you as a patient, but he has started a
well deserved retirement. He absolutely refused to let me try MTX, claiming
all sorts of horrible side effects that would immediately put me in the grave.
I changed docs, was immediately put on MTX ( I now also take Neoral and Folic
acid, and an NSAID as well). I am still very much alive and fairly active.
Without the MTX I would no longer be ambulatory. It has been several years
since I started taking the MTX.
When somebody talks about opening up a can of worms I start looking for the
worm sauce and a fork!
happy trails - Rob Glover
Dave, So you only have the two conditions and they are attachment conditions to
the 5 subsets. They should be considered as major symptoms for classification
purposes. More subsets.
The tendons are a major problem for me. I just figure that it is going to lead
to the joint damage. The tendons aren't doing their job so they are allowing
destruction of the joints. I wonder what the joints will look like in five
years? Maybe, for most people the damage is done before they know of the disease
so it is easier to classify. I can't ignore my tendons because they are so
messed up that they have interfered with my quality of life. Thank goodness the
pain meds loosen the tendons up to allow movement.
Thanks for the info,
Pat B
I have now been urged to go on MTX.
I have long dreaded and deeply feared this moment.
I have heard MTX horror stories.
I have heard positives, too, but I also have little faith in MDs, as
they deaccentuate and brish-down the side effect realities.
MY ? IS:
Are there any other safer, less risky Psoriatic A meds that anyone knows
of?
Thanks,
Jon
I have read several posts that said they all felt their PA was brought
on by an infection of some sort. Does anyone out there feel that their
PA might have been brought on by an accident or trauma?
Linda
Dave, I still don't understand what you are getting at with the research. My
joints are fine. My tendons are messed up. It takes longer for a sprain to heal.
It is easy to knock my wrist against something and then have it immediately
swell. I have mild Ps. these are what I am dealing with. Seems to be very
similar to what you are saying? Right? My Doc says PA but are you saying it is a
different subset? Is it just like when they say the art can show up prior to the
Ps in some people? The tendons will eventually harm the bones at the joints.
Most folks only have a couple joints affected but mine is just about all over.
Jaw, neck, shoulder, elbow, wrists, hand, hips, knees, ankles and feet. I did
have three toes swollen for a few months but they eventually returned to normal
size. They keep popping at the joint. I attribute the swelling going down to the
methotrexate being taken for a year now.
Lke I said the bones are fine "for now". Is that what you mean?
Curious,
Pat B
Hi,
I started my MTX pills this week, instead of the shot. I was told to take 5
pills per week, 3 on wednesday and 2 on thursday. However, I was scared that
I would get sick so I took one on Tuesday night, 3 on wednesday and Im going
to take one today. Does it matter how long apart they are taken?
Randi
Long Beach, CA
thanks to everyone who e mailed me with info on UK groups and other things, it
was really helpful.
ive now been referred to a rhuematologist, and I waiting for the appointment to
come through.
I thought id also let you know that I stumbled across a spiritual healer. im
not into that sort of thing an awful lot, but he did some healing on me and it
was quite nice!
he asked me about diet and also asked went to other points on my body that I
hadn't said hurt (my elbows were sore that day, but I didn't mention it)
He wants me to go and see him again (he is one of my brothers friends dad) and I
thinking about it. Its free and he is registered so its not some "dodgy" thing.
has anyone else tried this? what was your experience?
many thanks again
Tracy
Tracy Sevenoaks asked if there were any organizations in the UK for PA
sufferers.
Contact Mike Ainsworth at MAinswo884@...
Also, a wonderful group that sent me information is called Psoriatic
Arthropathy Allicance, P.O. Box 111, St. Albans, Herts, AL2 3JQ, UK
Telephone/fax 44 (0) 1923 672837
e mail: info@...
Website: www.paallicance.org
David Chandler is the co-founder and he wrote me back and was VERY nice
and I am sure that he will be able to help you over in the UK Tracy!
Good luck.
Linda Schroeder
Poulsbo, WA.
Well my eyes are finally not running as bad as they have all week since
the switch to Celebrex from Relafen.
I hear a lot of folks saying that their joints are tight in the morning
upon waking. My tendons tighten up after I get home and put my feet up
from work. Say at least a half hour or more and they clamp down on me. I
seldom experience stiffness in the a.m. and wonder why? Is it normal for
the stiffness/tightening to occur at the end of the day instead of in
the a.m.? Is the morning stiffness just not noticed because of the pain
pills that help loosen up the tendons and allow me to move? Did some
lifting this evening at work and it felt good to be "exercising" the
muscles. The Celebrex lets me do more with less pain. Yippee!
Pat B
Eufaula, AL
Ok, I called Costco and the MTX perscription is 77.49 for 100 pills. Im
going to ask the Dr to prescribe that instead of taking the injection at
12.5mg every week. He suggested I go to mexico to buy the pills, because he
says it is the same medicine just a lot cheaper. I dont pay anything for the
injection every week cause my medicare covers it and my dr accepts my medicare
as full payment. However, I think such a high dosage at one time is making me
very ill. Do you all think Ill feel better if I take the pills?
I also have very high DHEA and I am on a diruretic for that. He gave me the
ultram and I have been taking that every few nights for pain, could that cause
the rash? OR the clinirol?? The package for the clinirol says avoid exposure
to sun. I havent laid out in the sun, but its been sunny here. I like to get
some sun on my PSoriasis, it makes it look better.
Thanks for listening,
Randi
Dear Randi,
Your post really spoke to me because I am now looking for a job after being on
long-term disability for four years. I have been less tired physically since
I stopped working but my mental health has deteriorated greatly. I miss the
satisfaction of doing productive work, of spending time with co-workers, and
of being competent in my field.
I think that you should try your hardest to follow your dreams in spite of
your illness. I know that accommodations have to be made at times. I do
think you'd need flexibility if you attend law school. Find out what would
happen if you had a really bad flare and had to drop out of a semester, for
example. If they will work with you, I definitely think you should go with
it.
You mentioned depression and lack of energy. I hope that your antidepressant
will soon start helping your energy level. Depression is a serious sap on
one's physical stamina. I am just now getting mine under control with
medication so I know from whence I speak!
I worry about taking so many meds too. Like Trish said though, I worry more
about what the diseases would do to my body without the meds. I think we just
have to educate ourselves and try to take the least toxic meds available and
then deal with the side effects as best we can. It sounds like you're doing a
good job there. I really admire you for doing a weight-training program. It
takes persistence and discipline.
Dwanna
Hi all,
my dr. finally called me back and I told him I had a rash all over my neck and
face. He said stop all meds and buy some benedryl. I said " How can i stop
the clinirol, Ill be in such pain" Then he said, ok, dont stop that one., I
then asked him about injecting myself with MTX. He said, i would have to have
a service that disposes of the infectious waste, it is against the law to
throw needles in the garbage. I would also have to have someone come out and
show me how to do the injections. He then suggested I go to Mexico and buy
the MTX pills, he said it cost 20 bucks for 100 pills and it is the same as in
the stuff here. I only live about 2hrs from Tijuana, but I feel weird about
doing that. Im so depressed today, I cant snap out of it.
Randi
Does anyone use one of these for emails, word processing?? How well do they
work?
Randi
I have recommended this list to others and now it seems to be in a lull. Please
post even if just to say "ouch".
Well, I'm stressing out again. The man that was trained to do my shift job said
he would stay for about 5 years before going into his Daddy's business. It's
been less than 5 months and he has resigned. I think the bosses felt that if he
was going to stay for even half of the 5 years it would give me time to get
where I could handle the shift job again with a few changes to limit the stairs
and such. The plant manger called me in to see if I felt like trying it for a
few weeks til they found somebody outside to bring in and train this time. The
PM said he didn't know why he even asked me but he was grabbing at straws. There
is another Research tech. but he said he would loudly refuse to do the shift
work even temporarily. I told the PM once they hired someone I could still do
the work I do and just do it during the hours the newbie worked. That way I know
the job and would be around for questions and the newbie would be doing the
heavy lifting and stairs. I don't know what will happen. I want to do it, but
can't.
how do you handle stress?
Next, have you ever gone on a weeks long craving for a certain food?
Lately sodas taste like a mouth full of sugar, to me.
I used to drink them quite often. Right now I'm on a grapefruit kick. not just
one a day but many a day! Could this be a side effect of the meds? Or just my
body telling me It is lacking something? Or have I resortd to eating a food my
Dad enjoyed when he was alive because I'm stressing out?
I'm still on 25mg of methatrexate a week and don't go back to the Rheumy until
April. I think a sign of getting better is being able to gripe. Before I was
busy just walking and getting around and now I have the time to look around and
do more housework.
What are signs to look for that tell you you can decrease the pain meds? Do they
start to give you an elated feeling? Do you feel good enough to forget to take
them on time? The weather goes from cold to very warm and rainy to sunny. The
barometric pressure changes are probably to blame for the aches and pains of
arthritis that flare when a front moves through.
Feeling bummed out
please post,
Pat B.
Eufaula, Alabama
My name is Jon.
I am 42, and live on Long Island, New York. For those of you who do not
know where this place is, nor exposed to the infamous offerings from our
Isle that we have foisted on the entire world( Amy Fisher, Joey
Buttafuoco, Jesssica Hahn, et. al. ...) is is America's longest and MOST
DENSELY POPULATE Island, lying due east of New York City, and comprising
two of the five Boroughs, or sections, of the City of New York( Brooklyn
and Queens) plust the suburban communities of Nassau(1.6 million souls)
and Suffolk( 1.8+) counties.
But, thuis isn't about demographics; it's about me.
I have had psoriasis since I was 20; it only developed into the RA
component a year and a half ater that. Actually, the psoriasis was in
deep remission when the arthritis came in to ruin my life, which it did;
but blood tests and other medical judgements clearly diagnosed my
condition as Psoriatic Arthritis.
I have had an active psoriasis case on my knees and lighgtly on my right
elbow for years. Who KNOWS what 'works' anymore, and what does not.
I find that my RA is treated and addressed with greater 'ease' by the
medical community than is Psoriasis and its attending relation to
rheumatic disease.
I donlt want to bore anyone with 'Wo Ist Me', but my hands are the
joints most affected, and it restricts my life.
Amazing, isn't it?--how pain in HANDS nd fingers CAN EFFECT your total
sense of wellness, period......
I run a small business, and was brought in to run it, as it was dying. I
am a paid 'mercenary' brought into businesses to hopefully turn them
around, or close them down with as much dignity and grace as is possible
under those circumstances.
I came to this 'profession' through a tortured, long and winding road.
I was a History Major, and did graduate study in International
Economics.
I am a published writer, and wish, hope and pray that I had the
financial means to blow off the business world and WRITE!WRITE!WRITE!
Alas, we are always captives of our realities. We can co-exist with
them, or blindly flail at them, too. I choose to maneuver as best as I
can through them.
I hope to zero in with all of you on best treatments, experiences pro
and con, meds known, tried, discarded and sowron for(or AT, too). I
shall share all of this as well, as one who helps me shall, I hope, be
helped by me.
Thank you, Michell for running this list.
Jon
Has anyone had a problem with weight gain they think is related to the
PA diagnosis?
Linda
Hi Friends,
A Happy Thanksgiving to all. I am on my third day of Arava,
the "loading dose" is 100 mg (five times the normal daily dose). You do this
for three days, and then go to the 20 mg./day I understand. So far no results
--I am sure it will take 4-6 weeks at least. My fingers on my right hand are
quite
swollen and I cannot bend any except the pinkie. I am going to have to get
some of those arthritis helpers for opening jars and cans, etc., even door
knobs. I understand there is a catalog of such things. I think the Arthritis
Foundation might have some info on it. I will check into it and if I find
anything out, I will share anything I get.
Dan- I have no problem for the other mailing list to join up with us. The more
the merrier -- like you said!
The following are some web sites that I have found very helpful.
<A HREF="http://www.x-l.net/Lyme"
you know that Lyme is frequently undiagnosed -- as it can cause arthritic
conditions -- it is wise to have a blood test for Lyme when you are in the
diagnostic stage) InteliHealth
<A HREF="http://www.intelihealth.com/IH/ihtIH?d=dmtATD&c=38240&p=~br,AOL|~st,4
08|~r,WSAOL002|~b,*|"
informative daily health newsletter with hyperlinks to press releases on
important medical findings that were released that day
<A HREF="aol://5863:126/mB:107315"
<A HREF="http://www.psoriasis.org/psortypes/arthritis.html"
Arthritis Fact Sheet [NPF]</A
will link you to the site where you can peruse newsgroups on any subject)
<A HREF="http://www.aapainmanage.org/index.html"
management</A
management) <A HREF="http://www.sjogrens.com"
loads of info on this underdiagnosed auto immune disease)
<A HREF="http://www.rheumatology.org"
<A HREF="http://www.aztec.co.za/users/drdoc/"
African doctor who keeps a web site with lots of easy to understand info on
it), <A HREF="http://igm.nlm.nih.gov/"
your own MEDLINE search here on any medical topic.)
Anyone in our group -- please fill the rest of us in on good related sites you
have found. We can eventually build a library of them for newcomers to the
group to see and use!
G'nite all,
Michelle
Michelle.
just wondering what happened to the list? I haven't gotten any messages for
a couple of days now. Just curious.
Denise
Thank you Trish for recommending ArthritisNet for me to gather some
information on PA. You also asked what Hashimoto's Thyroidistis is...it
is low thyroid function from an autoimmune disease. Mine was VERY low
and with oral medication (synthroid) I am doing much better.
Several references have been made to DMARD and I was wondering if
someone could tell me what that meant. Thanks.
I have read several references to methotrexate. My doctor just started
me on this two weeks ago. I take three pills once a week. He told me
that I should not really have any side effects, but from reading on this
list...I am skeptical of that statement now.
Linda
Poulsbo, WA.