Psoriasis Foundation Online Chat, January 22, 2004:
Open Chat with Psoriasis Foundation Staff Session: 5:30 p.m. to 6:30 p.m. (Pacific Daylight Time USA)
ouchyk: I know someone who would like to try it
torry1: just curious if any are approaching FDA approval
jlind: hello everyone!
torry1: Hi Jennifer
ouchyk: hi jlind
jlind: thanks for coming tonight!
LuciaK: WEll it's still coming down the pipeline, but early studies are very promising for both Psoriasis and Psoriatic Arthritis
LuciaK: Hi Jen
torry1: I have been in trials for both Raptiva and Humira
jlind: Lucia probably told you that I'm the moderator for the chat
jules17: i am on raptiva
nitegale: hello everyone
ouchyk: hi marie
torry1: yes, Jen...thanks for hosting us
nitegale: hi karen
LuciaK: Torry-how did the clinical trial go for you?
torry1: very well on both
jlind: I'm going to interrupt for a second with standard disclaimer language
torry1: Humira was faster and more effective
jlind: my apologies -- this won't hurt a bit :-)
nitegale: i had a big day today and saw a new derm in nyc at mt sinai medical center
jlind: The information presented in this chat is for educational purposes only and should not be considered medical advice.
jlind: Information provided by the National Psoriasis Foundation is not intended to replace the counsel of your personal physician.
jlind: See your physician before changing anything in your treatment plan.
jlind: We are now ready to chat! Feel free to ask questions -- we want everyone to feel comfortable.
LuciaK: Anyside effects with the Humira Torry?
torry1: Gale, how did your appt go?
torry1: none at all, Lucia
LuciaK: Glad to hear. That's the same info I've been hearing from other members.
nitegale: it went well he is now putting me on mtx
jlind: Gale, who did you see?
torry1: started to see results within 2 wks, and have been clear for about 20 wks
nitegale: dr. steven cohen
LuciaK: Very exciting!! Anyone else on Biologics?
nitegale: he works with dr. lebwohl
jules17: i am on raptiva
jlind: I'm glad it went well for you -- will you also be on folic acid?
nitegale: yes
jlind: Yes, Dr. Lebwohl is on our medical board, as you probably know
LuciaK: Jules--how many weeks on Raptiva?
nitegale: yes it was purely a coincidence
torry1: how is the Raptiva going for you, Jules?
jlind: you're in good hands!
jules17: about 2 yrs
nitegale: lol
jules17: great
LuciaK: two years Wow!! You must have been in clinical trials also
jules17: a few sinus infections
torry1: are you remaining completely clear?
LuciaK: Good results Jules?
jules17: yes i was in evvansvill ind
jules17: stil have a few spots but very manageable
LuciaK: Any problems with the injection part of it?
nitegale: i am a little scared to start the mtx- hate having my blood drawn all the time
torry1: this from a nurse, Gale?!
ouchyk: its better to have it drawn just incase you have a problem marie
jlind: Yes, that can be a pain, Gale
nitegale: you bet- i'd rather dish it out
ouchyk: I'm sure you'll be fine though
LuciaK: Glad to hear you are having the blood work nitegale. Thats very important
nitegale: he also said i have pa
jlind: I'm sorry to hear that -- do you have swelling?
LuciaK: What is your dosage of MTX Nitegale?
Sooner_Rog: how is pa diagnosed?
torry1: standard fingernail issues and knuckle swelling?
jlind: PA is usually diagnosed based on a patient's history
nitegale: 2.5 mg every 12 hours for 3 doses -once per week
nitegale: yes
jlind: PA usually manifests itself in the small hand joints and/or feet
jlind: because it looks like other arthritis diseases, it's hard to diagnose
jlind: and, there isn't any blood test that definitely diagnoses it
nitegale: he was angry because i had been to a rheumy and the rheumy told me i did not have pa
ouchyk: A good rheumatologist should be able to tell
torry1: how often is pa seen without those symptoms...such as back pain
LuciaK: So you are taking 7.5 mg a week. That's a fairly low dose. Sounds like you doc is being cautious with you.
jlind: pa affects people differently, but joint pain can also be caused by overuse injuries
nitegale: i guess because he is just starting me on it
jlind: another reason why it's hard to diagnose it.
LuciaK: With MTX the goal is usually to get the best results with the lowest possible dosage.
Sooner_Rog: is there any corillation between back pa and red eye's?
jlind: conjunctivitis?
torry1: I am very interested in the possibilty of ankalosing spondylitis
nitegale: Sooner- could you mean Reiter's syndrome?
LuciaK: Sooner--Conjuntivitis is symptom of many auto immune diseases
nitegale: torry my rheumy tested me for that using the hla-b27 antigen and it came back neg
Sooner_Rog: i believe i read some where that red eyes can indicate pa..
LuciaK: Including PSA
LuciaK: You're right Sooner. Have you been to a Rheumy?
jlind: these diseases can mirror each other -- the important thing is to keep seeing your doctor
nitegale: i have the red eyes too sooner
jlind: as the symptoms progress
torry1: I was curious if that genetic testing was an accurate indicator, Gale.
jlind: and to treat them as soon as possible
Sooner_Rog: no derm or reumy yet
torry1: it may take some time to get in, Roger
torry1: don't wait
Sooner_Rog: feb 3 i am finally getting in
torry1: good
jlind: that's good
jlind: yes, it can take a few weeks sometimes
nitegale: i thought thas was a marker they use for anklyosis spondylitis toory?
jlind: [Image]
LuciaK: It can be a long wait to see a doctor. That's one of the #1 complaints I hear from patients.
Sooner_Rog: i have suffored mild syptoms of p and possibly pa for 10 years
torry1: that was what I read, Gale
torry1: my symptoms sound very similar
Sooner_Rog: but this winter it is bad
nitegale: i have had the back pain for a few years now
LuciaK: What are you currently using Sooner?
Sooner_Rog: otc stuff
LuciaK: Coal tar? MG217?
torry1: the rheumy I saw pretty much dismissed the possibility of pa, since I don't have the classic hand symptoms
Sooner_Rog: coal tar shampoos
jules17: i have recently suffered from pa in finger joints and feet
torry1: I am considering a second opinion
jlind: Torry, it's good to follow-up on that with a second opinion
LuciaK: Jules-do you joints feel like they're radiating heat?
jlind: are you treating the symptoms for your back pain?
jules17: no not really
Sooner_Rog: i have been on anti inflamitories for years
torry1: that's why I was wondering if I don't have the hand symptoms but still have pa
torry1: Hi Mitch
jules17: they are very sore early in the morning
Sooner_Rog: motrin
jlind: welcome Rosy (Mitch)!
rosy3939: hi everyone
LuciaK: Swelling, or loss or range of motion? Those are common symptoms
Sooner_Rog: ibuprofen
ouchyk: hi mitch
rosy3939: how everyone tonight
LuciaK: Greetins Rosy3939
rosy3939: rosy = mitch
jules17: my doctor told me ibuprofin first
torry1: I have had back pain for 15 yrs now, as well as knee and ankle problems
jules17: definately have swelling
Sooner_Rog: it has helped, but 1000 mg per day just to cope has gotten old
LuciaK: That can help some with swelling and inflamation
torry1: I know that I have some form of arthritis, and question what form.
Sooner_Rog: i stopped all pain meds 1 wek ago
rosy3939: kim, how your mother in law doing?
LuciaK: Sooner--definitly time to see the doc
jlind: Rog, did you have any stomach upset from the NSAIDS?
jules17: thumbs are starting to grow crooked
Sooner_Rog: i know
torry1: ok for the moment...I'll chat with you later on that
Sooner_Rog: i am aching about 90% of the time
torry1: have you tried Aleve, Roger?
LuciaK: Some people use Vioxx or celebrex to avoid stomach issues. Talk with you Dco
jlind: Jules, do you have access to occupational therapy for your hands?
BobO: [joins chat]
ouchyk: I use prevacid to help with my stomach issues
torry1: hi Bob
jules17: no
jlind: some people get "ulnar drift" with arthritis fingers
Sooner_Rog: some aleve, yes
jlind: where the fingers go at an angle -- is that happening to you?
rosy3939: if your joints are starting to disfigure you need to get to a good rehumy and start some more agressive treatment for the PA
LuciaK: Vioxx and Celebrex are Cox-2 inhibitors and tend to be much easier on the stomach.
Sooner_Rog: is it better on the liver etc?
torry1: aleve helped me for a number of years until I went to Vioxx
Sooner_Rog: great
rosy3939: everything is a tradeoff. Enbrel is great for the join pains.
Sooner_Rog: is it ok on the kidneys and or liver?
torry1: one benefit of Aleve is longer lasting relief
LuciaK: It's not necessarily hard on the liver. But anything you take by mouth is processed by the liver.
nitegale: rosy how soon did you feel relief after taking enbrel
LuciaK: Any Amevive users out there?
LuciaK: Remicade?
rosy3939: three days
jlind: Mitch, that's great!
rosy3939: it taken 13 weeks to work on the psoriasis
torry1: we have at least one member I am familiar with using Remicade
jlind: how long have you been on it?
nitegale: that soon- any side effects for you?
LuciaK: Wow! That's impressive!
rosy3939: 13 weeks
nitegale: i was reading it takes several months
LuciaK: Still having good results? Side effects Mitch?
rosy3939: no side effects, but I have tolerated all the drugs with no effects.
nitegale: my derm said he will use the enbrel as an ajunct med at a later time
LuciaK: Torry-was that family member on Remicade for P or PSA?
rosy3939: hi bob
BobO: [joins chat]
jlind: welcome BobO!
LuciaK: Hi Bob
torry1: not a family member...NPF member. I believe he has both.
rosy3939: ni bob
BobO: OK! I Finally Got In !!!!!!!!!!!!!!!
jlind: you were having problems?
jules17: hi bob
BobO: Good Evening Everyone!
nitegale: hello
jlind: please let us know if you were having problems getting in
BobO: Yes I was having a bit of trouble
BobO: But that can wait until
BobO: Another time
jlind: [Image]
BobO: Yes, Thank You
LuciaK: What about diet? Anyone trying anything new?
jlind: well, feel free to e-mail me at jlind@psoriasis.org
rosy3939: im on the seafood diet
BobO: OK Jennifer
torry1: Is AK considered a form of PA?
rosy3939: all the food I see
jlind: I love that diet!
torry1: Mitch!
LuciaK: HA HA Mitch!
jlind: I'm on that too!
torry1: I know you and I would get along!
rosy3939: only eat from the five basic food groups
LuciaK: One of my all time favorites
jlind: Mitch, you saw a few other members at a dinner party -- looks like you all had fun!
nitegale: i am trying the south beach type diet low carb monsat fats -not much improvement
rosy3939: sugar, starch, fat, alchol and salt
torry1: oh, now you got him started....
LuciaK: I ask because I have been getting a lot of calls from patients trying new diets.
ouchyk: are they having any luck?
torry1: My friend's daughter tried the Pagano diet
rosy3939: had a number of them. Been to Chicaog and met the Chicago grop. Paid a surpise vist to NC.
LuciaK: Hearing a lot about Turmeric...which has been on the message boards a lot.
jlind: fun!
torry1: thought she got results for a while
rosy3939: Thi saturday we are getting together at MOhegan Sun in CT.
torry1: rub it in, Mitch!
ouchyk: :-)
LuciaK: So I've been reading. Sounds like fun.
rosy3939: looks like 14 -16 people
jlind: it's great that you're in close vicinity
torry1: At least I've had the pleasure of meeting Jennifer and Eve-Maridy.
torry1: [Image]
jlind: [Image]
jlind: yep, it was great to meet you too!
torry1: even if I was an hour late
BobO: My P waxes and wanes monthly all on it's own, I can't imagine how I would be able to distinguish any effect from diet
jlind: but putting my picture online? hmmm....
jlind: [Image]
jlind: kinda shy about that
torry1: sorry, should have asked your permission
LuciaK: Eve-Maridy keeps getting on me to put up my picture.
jlind: no, I
jlind: 'm just kidding.
rosy3939: it dosen't hurt
jlind: it's good to put faces to names whenever possible
torry1: be careful Lucia, I bring my camera to your office
BobO: Lucia, are you a patient educator ?
LuciaK: I know. Just haven't gotten around to it. All of you members keep me too busy
torry1: I can imagine!
LuciaK: YUP!
rosy3939: us,
BobO: Nice to meet you Lucia !
LuciaK: I'm that voive on the other end of the phone when you call inwith questions.
LuciaK: Right back at ya!
rosy3939: did you do any of the NPF community meetings?
torry1: you are in the Portland office, Lucia?
jlind: yep, she is in Portland, too
ouchyk: do you have an email address where we can ask you questions luica?
LuciaK: Oh yeah! I wasn't at the conference this past year, but I taught classes in Orlando.
ouchyk: if any should arise
torry1: some day I will find it without driving in circles
jlind: yes Kim, it's hard to find this place!
jlind: especially at night, when the support group met here
LuciaK: Best way to get hold of me is 800.723.9166 and go to Patient Education. I'll be waiting for your call!
torry1: you don't have to tell me that!
rosy3939: it a secrect place but if you follow the flakes you can always find it
LuciaK: I'm in Portland
torry1: I have a reputation now.
rosy3939: what do you mean now?
BobO: That's quite a role Lucia. When people call they always feel like they are "bothering" you don't they ,because they think that P is not like cancer
LuciaK: Ouch...that's harsh!
torry1: Mitch, I will deal with you later!
jlind: no, I also get lost if I have to leave this neighborhood -- not familiar with the Beaverton area
LuciaK: Bob-the patients are the best part of my job. But I have to admit I hear some pretty crazy things.
rosy3939: im inocent
torry1: I'll be coming from another area next week, so don't expect to see me on time yet.
BobO: Yes I am sure Lucia
torry1: aaack, aaack, aaack......think I have a hairball, Mitch!
jlind: that's why it's important to raise awareness about psoriasis --
jlind: that it can't be dismissed as merely cosmetic
BobO: The most financially needy patients are really the ones we can help the most, because they are always at wits end
torry1: that is such a revelation to so many
LuciaK: Now that I think about it, weren't you the guy who called in with questions about aniaml slobber and P?
ouchyk: hahahhhahaa
torry1: who, Mitch?....sounds like him!
rosy3939: my dog love my psoriasis.
jlind: Bob, especially with the changing rules in insurance
LuciaK: I hear that a lot Mitch!
jlind: and the changes to the social services structure
rosy3939: didn't call in but there was a Vet who spoke at the Boston community meeting who complaint that the dogs all loved her P
LuciaK: You're right Bob. Those patients need the most guidance.
jlind: Our Advocacy department is working really hard to ensure psoriasis treatment continues to be a priority
BobO: Yes there are many many who can't afford even the most inexpensive generic topicals
rosy3939: when is the NPFF going to lobby for Universal Healt Care?
LuciaK: Mitch--the animal thing just scratches the surface of what I hear.
jlind: you know, they would appreciate hearing your comments directly
BobO: And often these people get pushed into Prednisone out of desperation, and then whammy at the end
jlind: at advocacy@psoriasis.org
jlind: they're working on a legislative agenda this winter
jlind: so this is the perfect time to make your opinions known
BobO: OK Jennifer, yes
jlind: and, if you'd like to volunteer, they'd love your help
LuciaK: Many of these people fall into the working poor category, or underinsured
torry1: hopefully to recognize this as an immune system disorder, and not a skin disease
rosy3939: for what, just Psoriasis or for the complete gambit. This country has its moral shame in that people go without medices or heathcare.
LuciaK: Many don't know how to access local resources or assistance programs.
BobO: OK Yes Jennifer I will seriously consider that
rosy3939: Have many time over. Have lobbied directy to Sen. Clinton, Sen Corrizine and Laugtenberg
LuciaK: That's something we are trying to do. Decrease the disparity in health care.
LuciaK: Not an easy task!
jlind: that's great, Mitch!
torry1: good luck with our wonderful, caring government
rosy3939: but wasy to many fall between the cracks. The working poor who make to much to public assistance but have no medical coverage
nitegale: i don't know what i would do with out my health or prescription coverage
jlind: drug companies also try to work with patients who can't affort treatment
torry1: maybe we could start a terrorist regime so they would have to deal with us
jlind: but yes, many slip through the cracks
LuciaK: I hear ya Mitch. It's so frustrating. In order to qualify you have to be one step above living on the streets.
rosy3939: drug company are in teh business of making money. Yes do help some but not enough.
BobO: Imagine only being able to afford Crisco for your P
torry1: too much $$$ spent on advertising that could assist patients
rosy3939: Hae been a politican locally for fouteen years. Have trie to deal with these issues for a long time. It is frustrating.
LuciaK: Anyone have any probelms getting insurance coverage becasue of pre-existing condition clauses?
torry1: I am hoping that with so many new biologicals, the prices will be driven down due to competition
BobO: New drugs cost unearthly amounts of money to bring to market, however, so the drug companies aren't completely eveil
ouchyk: no, but I was thinking of switching insurance companies in the spring is that an issue?
Sooner_Rog: How is federal blu cross/blue shield?
jlind: it can be for some plans
rosy3939: NO.but I tend to use studies as a way to getting some on the more expesive drugs.
torry1: me too, Mitch
ouchyk: how can I find out about the new plan I was looking at should I call them and inquire?
LuciaK: Have you always been given active drug Mitch, or have you been in the control group?
torry1: the problem with that is limited time access to the drug
jlind: yes, you can call them to find out
rosy3939: Take a drug like Enbrel, even if you have insurance with a co-payment of 20% you cost could be between 1 -2 thousand dollars ayear. A big nut for those who are just making it
BobO: Well said Mitch
torry1: I received Raptiva for the entire study, but am possibly receiving placebo for the 2nd 12 weeks
BobO: And THEN maybe not guaranteed success
rosy3939: I no longer will do a blind study. Right now I am doing a study on Enbrel. 26 weeks open study
jlind: Kim, what makes you think that? less efficacy
torry1: that is how the Humira study is set up
rosy3939: Then add to mix that most derms are useless as a fart in an iron lung when it comes to treating psoriasis.
torry1: I have maintained clearance up to this point though, so if it is a placebo, there is a much longer period of remission than with Raptiva
BobO: Yes, but Mitch aren't you in the opportunity rich NE
jlind: a large part is that psoriasis was seen as cosmetic for so long
nitegale: rosy that is why i ventured into manhattan, derms out here are not comfortable being aggressive- most scared to prescribe mtx
rosy3939: Are that many even if they have insurance there is little access to derm or rheumy in that geograph location. Health care and it delivery systems is all screwed up in America
BobO: Well, it all comes down to being your own patient advocate
jlind: how as a foundation can we help educate them?
LuciaK: Mitch--access to healthcare in rural areas is greatly lacking.
torry1: not always easy if you don't know how to access the system
BobO: Yes that is true Torry
jlind: as patients, what would you suggest? (be nice now)
jlind: [Image]
nitegale: I live on Long Island, NY hardly a rural area and the derms here are not adequate in treating p
rosy3939: Bob, I am and i'm lucky. I live in the NYC area. I have seen three of the best doctor in the world when it comes to treating psoriasis. Dr. Mark Ludlow at Mt.Saini, Dr. James Krueger at Rockerfeller Univisity Hospital and the study doctor im with now, Dr. Alice Golieb ast Robet wood Johnson Medical Center.
torry1: get rid of the quack listed in your directory who made the statement about all p patients being overweight!!!!
BobO: Derms have very little time or interest in P, it's almost a losing battle
torry1: [Image]
jlind: wow Mitch, you're seeing great people
rosy3939: Yes I am blessed to be able to get quality healt care, but what about other. Am I not my brothers keeper?
LuciaK: I agree with Jennifer
BobO: Holy Mackrel Mitch !!!!!!! Those are the best of the best
rosy3939: the Best. Yo can trow in Jerry Bagel from Heighttown who I saw once, just to far to travel
torry1: I feel the same way, Mitch...and it is even more difficult for children to find treatment that works.
rosy3939: And the nicest of the nicest
nitegale: Jlind- Dr. Cohen made a suggestion today that if a derm cannot treat you after x period of time with adequate results he should say so and not waste your time
LuciaK: Wow...that's quite a list Mitch.
jlind: thanks Gale -- that's a good point, so that you're given realistic expectations
rosy3939: he right but he not going to give up a chas cow
LuciaK: What therapies did all of those doctors have you using Mitch?
nitegale: not only that jlind but they should know who is the best and refer you there
jlind: yep, that's the ideal. thanks for your feedback, Gale!
rosy3939: But im licky I live in the NY metropolitan area. Health care is available by quality doctors. What about middle America where ther may not be a derm for 200 miles let alone a compentent one?
torry1: I would like to see the NPF do some research on medical professionals listed on this site
nitegale: i cannot begin to tell you how upset he was when i gave him the list of derms i saw
torry1: not just list them if they pay a fee
SuperAir01: [joins chat]
jules17: i am very pleased with my derm in evvansville ind
torry1: Hi Chad
SuperAir01: Hey, whats going on
rosy3939: The list is endless but of all the doctor I one with the best bedside mannor is Mark Ludlow and you can get an appointment with him at 6:30 in the morning
BobO: Let's hear i for Ewansville !
jlind: the derms are professional members,
torry1: Chad is a Raptive patient
lc2t: [joins chat]
rosy3939: that good
LuciaK: We would love to do research but unfortunatly we can't evaluate wach doctor listed. Very expensive!!
jlind: welcome lc2t!
torry1: the weight quote from 1 was far from professional!!!
rosy3939: hi super, hi ic2t
lc2t: hello everybody
nitegale: also jlind one doc maligned the usage of mtx- and yelled at me and said you will not get systemics in this office if you love like having a liver
jlind: wow -- that's a strong statement that he made
torry1: VERY!!
BobO: Yeah, that's life with some of these derms
rosy3939: like I said before most derms are usless when it comes to psoriasis
nitegale: it was a she- she should absolutely no compassion and belittled my disease
LuciaK: Wow nitegale. Many derms are not comfortable with systemics. The same goes with Biologics.
rosy3939: everything in life is a tradeoff
BobO: They become parodys of themselves after a while
jlind: a group of rheums and derms are working together to raise awareness
edr: [joins chat]
rosy3939: many doctor are not comfortable with anything but zits
jlind: about how psoriasis and psoriatic arthritis are related
rosy3939: hi edr
nitegale: as a matter of fact everyone belittles this disease and says well at least it is not cancer
LuciaK: Hi Ed
Nicobx4: [joins chat]
BobO: Helloooooooooo Ed !!!!!!!!!!!!!!!!!
edr: Hi Mitch. Hi Lucia.
rosy3939: hi nico
jlind: welcome, everyone!
edr: Hey Bob.
LuciaK: Hi all
Nicobx4: HI
rosy3939: lot of new face tonight. That great.
edr: Thanks Jennifer
sooners74: [joins chat]
jlind: welcome sooners74
nitegale: this disease takes such an emotional toll on you
lc2t: vow! 14 people
LuciaK: Wow...welcome all.
sooners74: hey y'all
rosy3939: hey at the next convention in SD there should be a semiar on the proper way of straching
rosy3939: hi sooner
jlind: [Image]
Sooner_Rog: fellow sooner fan?
lc2t: hi there
rosy3939: serious
torry1: any details yet on the convention?
BobO: Say What Mitch ?
jlind: I'll suggest that, rosy!
rosy3939: have a collection of back strachers
sooners74: yes sir rog
jlind: our next conference is August 6, in San Diego
rosy3939: don't mock
rosy3939: lol
LuciaK: We were talking about break out session today for the conference. Suggestions are welcome!
Sooner_Rog: amen
BobO: What is a "stracher" ??
jlind: we'll have details in the next Advance, and online
rosy3939: spelling
rosy3939: it one of the side effect of psoriasis
torry1: any idea how soon we will have details?
jlind: how many were at last year's conference?
rosy3939: The cover page detail in Jan.
BobO: You meant "Back Scratcher" ?
LuciaK: Are any of you planning on making the San Diego conference?
rosy3939: yep
torry1: yes
BobO: Oh OK
rosy3939: I will be there.
rosy3939: going to make a vacation out of it
jlind: great!
BobO: Yes ALWAYS
jlind: that's the best way
LuciaK: Well I guess I get to meet everyone there.
rosy3939: your invited to NY
torry1: I'm looking forward to it!
nitegale: trying to convince my hubby on making a vacation out of it too
jlind: we're working on the agenda for the conference
BobO: How can you not LUV San Dieago
torry1: anxious to start booking hotel, etc
jules17: hey mitch , what is the feeling on biologics with all those high powered doctorse
BobO: Mich - I grew up in NYC
LuciaK: I was at the New York SIMS event mitch. Did you attend that one?
torry1: too many tan, thin, blondes with great skin, Bob!
PJ Leary: [joins chat]
torry1: hi PJ
LuciaK: Hi PJ
BobO: Hellooooooooooo PJ !!!!!!!
rosy3939: weather to perfect
PJ Leary: Hi everyone
PJ Leary: Hey BobO
jlind: welcome PJ!
Nicobx4: just sat down here....
PJ Leary: ty Jennifer
Nicobx4: saw some conversation about san diego
BobO: YEAH Yeah Yeah YEAH PJ !
PJ Leary: blush
Nicobx4: i just got back from there....very unimpressed
torry1: I say we invade the pool and tell everyone else we are highly contagious
rosy3939: thaey seem to think that is the future for moderate to servere p
rosy3939: hi PJ
PJ Leary: Hi Mitch
jlind: why were you unimpressed?
Nicobx4: one sec
Nicobx4: brb
rosy3939: hey have no problem going to the pool, this is from someone who sunbath au natural
PJ Leary: Mitch, are you seeing any improvement since we last talked?
PJ Leary: ( I also love the pool )
rosy3939: yes, I think the flu triggered the improvements
PJ Leary: lol, are you serious?
torry1: please, Mitch!!!!....the visuals!!!
BobO: Now all you need to do is bottle that Mitch hahahaha
rosy3939: imune system had something else to fight insted of itself
LuciaK: WEll if there are any last minute questions I would be happy to answer them before I leave.
PJ Leary: I don't have a problem with the visuals
PJ Leary: What was the topic?
rosy3939: yes I have one
nitegale: Lucia can you get a flu shot when you are on mtx and biologics?
LuciaK: Open topic PJ
PJ Leary: ty
jlind: the moderated portion of the chat will be ending soon
jlind: but of course, you can continue
rosy3939: I didn;t . it was good for my diet. lost 15 pounds in 7 days
BobO: "Who's gonna win the Super Bowl Lucia?"
jlind: hee heee
rosy3939: the Giants
torry1: also have a question re AK being a form of pa?
PJ Leary: I have a question about lowered immunity and meds
LuciaK: Nitegale flu shot can trigger P, but most people don't have an adverse response. Remeber getting ab ad case of the flu can trigger P as well
PJ Leary: Q: How sieriously does combining UVB therapy with etanercept lower immunity?
torry1: I believe you do need to be sure it is a "killed" vaccine, correct Lucia?
PJ Leary: I am concerned during flu season
LuciaK: Yes AK is a form os PSA
nitegale: I get a flu shot every year
torry1: thanks, Lucia
LuciaK: Yes, use an attenuated vaccine.
nitegale: thanks
rosy3939: had a terrible case of the flu this year and my psoriais got a lot better
PJ Leary: " Healthy man's disease ", Mitch
edr: Sorrry - I had to step away for a few minutes. I also have to take off now. Hope everyone has a good chat.
PJ Leary: Night edr
jlind: thanks for coming, Ed!
rosy3939: night
BobO: OH YEAH THANKS Ed !!!!!!!!!!!!!!!
torry1: night Ed
jules17: night
PJ Leary: night
LuciaK: Enbrel does lower the immune system. And many people do combine UVB with it...but as far as specifics I think that varies from person to person.
nitegale: Lucia I was concerned about lowered immunity because I work with some seriously ill patients
LuciaK: Do you wear PPE?
nitegale: yes
PJ Leary: ty
nitegale: Does the mtx make you really tired
LuciaK: Glad to hear it. Other precautions you can use include washing hads frequesntly and thoroughly
coachG: [joins chat]
jlind: yes, it can cause fatigue after taking it
PJ Leary: Mtx wipes me out
jlind: welcome coachg
rosy3939: hi Pam
torry1: Hi Pam
nitegale: Lucia the p is on my hands
LuciaK: Yes, fatigue is a common side effect
PJ Leary: Makes me sick, too, but that is just me
jlind: have you tried injectingi t, PJ?
sooners74: i've gotten used to mtx after a couple months
PJ Leary: Yes
jlind: any improvement over the pills?
LuciaK: nitegale-what kind of gloves do you wear?
PJ Leary: Both ways, injected in the 80's, pills in the 90's
PJ Leary: The injections took longer to have an adverse effecct
nitegale: i wear non-latex and only wash with cetaphil that i carry with me and then moisturize right afterwards
jlind: yes, I've heard injections have fewer side effects
PJ Leary: But, I had a crazy dr who got mad when I didn't get better right away and overdosed me
LuciaK: Nitegale--Many people also use the liquid bandaid to help prevent infection.
PJ Leary: The nausea and headaches were the worst
PJ Leary: I think it takes longer to get out of your system, too
nitegale: that only stung and never really covered me well
jlind: were you using folic acid with the injections?
PJ Leary: Took about 3 months for me to get over the side effects after 7 months of treatment
PJ Leary: No, they didn't know about that copnnection back then
jlind: it does take a while for it to leave the system, about 3 months
PJ Leary: I just cannot tolerate that medication
jlind: wow, I bet the side effects were bad without folic acid
jules17: mtx pills made me sick for the frst two days after taking it
PJ Leary: Yes, they were
LuciaK: Have you ever tried the very thin cotton gloves. They allow your hands to breath a bit more.
PJ Leary: Great for my pa, though
rosy3939: PJ you still on Enbrel?
LuciaK: Do you have fissures in your hands nitegale?
PJ Leary: Jules, I used composine suppositories to keep food down, they really helped
slg: [joins chat]
jlind: welcome slg!
torry1: Jennifer, do you know when we might see details like hotel and cost for the convention?
rosy3939: hi shana
BobO: Hello there Shana !
PJ Leary: Hi Shana
slg: hey guys
nitegale: the fissures went away last week and i am using the gloves everyday when i am home
PJ Leary: Yes, some of us are making reservations now
jlind: the hotel is the U.S. Grant, Kim
jlind: in San Diego
jules17: not on mtx any more
PJ Leary: Cool, thanks Jennifer
jlind: I'll post the phone number on the Web site tomorrow
rosy3939: thanks
torry1: are there Friday night events"
PJ Leary: BarbaraW and I are traveling together with a group from NC
jlind: so you can all start reserving ahead of time
Nicobx4: jlind........info on the conference can be found where?
jlind: I think we've have an event, not sure when
LuciaK: Glad to hear it. Do you use any other moisturizer beside Cetaphil?
jlind: under the Events section, Nico
PJ Leary: ( Barbara and her dh are buying my airline ticket!! )
PJ Leary: I use many moisturisers
ouchyk: I use aquaphor
Nicobx4: thanks jlind...sorry to bother you
nitegale: i use cutemol
jlind: it's a "save the date" page, with more to come
rosy3939: we can have our own event on friday
PJ Leary: Yep, I buy them on sale with coupons
jules17: thanks to all, time to put the kids to bed
jlind: not a problem!
jlind: happy to share any information I can :-)
PJ Leary: Night Jennifer, nice talking with you, as usual
LuciaK: Bye Jules
jlind: thanks for coming, PJ!
torry1: is there any kind of discount for the group, Jennifer?
PJ Leary: Oh, I thought you were leaving when it was Jules
PJ Leary: Sorry
jlind: Oh, I don't know -- I'll try to find out and post that, also
torry1: thanks
jlind: we should have that
PJ Leary: There is usually a group rate for the conference
torry1: any idea of cost for the convention?
PJ Leary: Every year, it is the same'
PJ Leary: Usually about $60 for us
rosy3939: reasonable
PJ Leary: And they feed and water us well
jlind: I don't have those figures yet
jlind: :-)
torry1: thnaks, PJ
PJ Leary: I am hoping they add martinis to the beverage list this year...lol
rosy3939: have to add into the cost the trip las Vegas
BobO: PJ . . . Can I Board with YOU???? Pretty Pleaseeeeee
jlind: and all of the previous convention material is online
torry1: patience is not one of my virtues
PJ Leary: Down, BobbyO
PJ Leary: Rooming with Barbara
rosy3939: Ill buy all the martinis you can drink
PJ Leary: Thanks Mitch
PJ Leary: Must have learned that trick in politics!
rosy3939: should be fun, fun
PJ Leary: I am soooo there
LuciaK: Bye all. Thanks for coming. I look forward to meeting all of ya'll in San Diego!
jlind: yes, thanks for coming tonight!
torry1: thanks for your help Lucia
PJ Leary: Barb and I are going early, I think on Thursday
rosy3939: good night, fun chatting
PJ Leary: Bye, Lucia
torry1: thanks Jennifer
nitegale: [Image]
nitegale: [Image]
nitegale: [Image]
jlind: the chat will continue
rosy3939: Have a production the Sunday before. The taking a week or possible two to travel west
PJ Leary: But, we have to leave on Sunday because my kids start school the next day
jlind: and we will have another moderated chat next month
BobO: The Beat Goes On
jlind: Thanks!
rosy3939: we chat every night
|
