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Posted 7/1/2006 12:49 AM (GMT 0)
Katy,
Speaking as a person in the medical profession, I give you my sincerest opinion and urge you to keep RISK OF INFECTION as your main priority. The skin is the best protection from bacteria, fungi and parasite from entering the body...and you are dealing with skin that is not intact. It WILL come back don't worry, like hair...it grows back thank God! But do keep any open flesh covered with sterile gauze, wrapped loosely with it, and if possible ask your MD what type of ointment whether it be Bactriban, Petrolatum...something that acts like a barier and promotes a healing environment.
The disease (Psoriatic Arthritis) will always be there, but immediate needs like the skin on your feet take priority. Enbrel will start to act at the root of the problem, so you're on the right track. :-) The seaweeds, fish oils and flax oils added to the diet are yes, fabulous for inflammatory diseases.
I'm going to read in my texts what can be bought for a topical barier as opposed to mineral oil. I have a feeling that mineral oil might not be the best...it may cause more slaughing off of skin. But it's OK at least it's something.
Are you able to be on a Tylenol regimen for pain?
And what type of MD do you have? A regular family practice DR or a rheumatologist?
Godbless and hang in there tiger! This is what we're here for! All we have sometimes are people, even though through a computer, who live the way we do & deal with these diseases. These people are truly the only ones most times that really understand.
Sincerely,
Erin
Posted 7/1/2006 7:12 PM (GMT 0)
Hi Erin,thank-you  for your support,and  very helpful information.I am dealing with so much Stress,I have a ex-husband,that is the only one coming around,when he applies my gauge,he puts it on so tight ,that it pulls so hard,it is stick to my skinless bottom feet,and sticky to the Big sores,i  at his mussy,the pus filled bumps that have come up,all over feet,toes everywhere,says he wants to pick them with a niddle,and has allready done so,which is making them spread all over,and then he says he"s going to pour peroxide all over my feet,I can not handle this,i will scream my head off, with so much Pain,my Dr. is away on a vacation(rheumatologist)  Please,response to me quickly,any body,I sincerely need help on this matter;       Sincerely Katy2                        
Posted 7/1/2006 9:33 PM (GMT 0)
I sincerely wouldn't let him change your dressings. That's abuse in my book. If I did that to a pt. I would get charged with negligence. NO PINS OR POPPING WITH NEEDLES. A solution of hydrogen persoxide and water could be used with a sterile piece of gauze to gently wipe away any ecxess skin or flakiness and cleanse the surrounding INTACT skin...but do not pour it directly on your feet. It's unpleasant & serves no purpose.
It shoudl be a LOOSE DRESSING. Just to serve as a protective barrier you know? It should feel like a loose sock really.
What I do when I change a persons dressing is: pre-medicate them first. For example have them take Tylenol 1/2 hour before hand if prescribed; gently unravel or cut off the bandage (have him buy bandage scissors and use an alcohol wipe to clean the scissors before and after each bandage change); with little 2x2 gauzes GENTLY clean & remove any excess exudate (pus, mucus, drainage) with a little hydrogen peroxide & water solution (use a small amount it doesn't have to be sopping wet just damp) and apply the new bandage. If the gauze is in a roll...cover the blistered open area going in one direction, you need not make it a think covering. And very loose.  If the gauze comes in pads just gently place it on top of the skin don't press it down.
You mentioned it hurts coming off. It could be that the bandages are being put on when the skin is wet...so when it dries? it dries to the gauze and sticks to everything! Be sure the area dries before putting the gauze on. This is what would be called a dry sterile dressing. A wet sterile dressing you can ask your doctor to write down for you if he thinks that's a good idea for you. He can then RX an ointment or sav for you.
Are you able to reach your lower legs and feet? If you're being hurt, it could be very good to do this yourself from now on and just maybe have your ex-husband assist you when needed. Say that you want to learn to do it yourself that'll make you feel more in control & better about yourself, therefor making you feel better when in such bad shape. This way it doesn't sound like you're telling him to "get the heck off of my feet!" so he doesn't get fresh or mad you know?
There is always the ER too. If you ever feel you need immediate help call an ambulance. There they can do your dressings and even perhaps set up a social services nurse or a homemaker to do dressings...and they can also demonstrate to your ex-husband if he's there how to do it properly. They're also capable of handling anything else that you might have concerns about.
Make sure your rheummy is aware of this when he comes back from vacation ok?
Write back soon.
Godbless,
erin
Posted 7/2/2006 4:46 PM (GMT 0)

Katy, how's it going?  Just checking in on you hon! 

Erin

Posted 7/2/2006 5:21 PM (GMT 0)
Just a few more things:
If you are not able to leave the house independently, you should be entitled to a visiting nurse.
I also thought of this: if your ex wants to really help you, have him go to your next rheumatologist appointment and have your ex do a dressing in front of the doctor or medical assistant or nurse whoever's there. Maybe it's just a case of him not knowing really how to do it properly. If he sincerely wants to continue trying to help you he needs to know how to do this correctly.
If the blisters are green, oozing, or have an odor...are hot, red, throbbing...you should really get them looked at ASAP whether it be in the ER or a local medi-clinic or an MD that makes house calls because you may need antibiotics if they are infected.
But DO TELL YOUR EX THAT HE SHOULD ABSOLUTELY NOT TAKE A PIN OR NEEDLE TO THE SORES! There is something called a staph infection that you really DO NOT want to get, and a dirty metal pin or needle is a pretty good carrier for staph bacteria.
I do not want to frighten you, I am extremely concerned about your case & want only the best for your health & safety.
Should you need any help/guidance/information/discuss something in private you can by all means email me. Just click on my member name to the left of this post and you'll find my email.
The 1st virtue a person has to take into consideration when taking care of someone else is "First do no harm". And I think your ex-husband really needs to be educated on how to properly treat the effected area on your body.
Sincerely,
erin
Posted 7/2/2006 5:22 PM (GMT 0)
My 31 yr old daughter was just diax . She has had scrioses all her life but now with the Arthritis . But nobody in the family has it . Is that normal ? Or is there some where in our background it comes from . Should I BE TESTED for it. thanks
Posted 7/2/2006 5:36 PM (GMT 0)
Hey Razzle!

31 years old?  Unfortunately that sounds about right.  Autoimmune disorders strike women in that area of life.  Mostly between the 20's through late 30's.

Some theories do suggest that familial tendencis play a part of this.  Genetics?  Who knows.  But it does turn out in a lot of cases that psoriasis, RA, SLE, and such runs in families.

If you have no symptoms you're most likely safe.  Bloodwork alone can't really determine any of this.  Blood values plus physical findings are what is needed for diagnoses.

I thought I was the only person in my family to have RA.  But my 86 year old grandmother was just DX with RA this year...so Lord knows how long she's had it.

My aunt I think probably had JRA as a kid.  She's 38 now but she told me that when she was a kid the pediatrician said she had arthritis!  So who knows!

Wow, what have you done for the Chiari Malformation?  People with them are few & far between!  I have it too, never consulted with a neurosurgeon though...and really don't ever want to!

Take care,

erin 

Posted 7/2/2006 6:13 PM (GMT 0)
wow Erin dont you have symptoms . I had the dsecompression surgery but still in pain because of the syrinx . I am hurting so much that I thought maybe I need to be tested for the Arthritus thing too . you never know . What meds are you taking for the chiari and what meds for the other . My daughter wants to have another baby but dr. told her the meds are not good for pregnancy and you shouldnt take it .
Posted 7/2/2006 6:15 PM (GMT 0)
And Dr. told her it was psoriatic arthritis . ending in tic . are they the same disease?
Posted 7/2/2006 10:06 PM (GMT 0)
hey Razzle,

geesh, well...i was on a bunch of seizure medication & a diuretic for a time when i was extremely symptomatic.

when i had a lumbar puncture done i had normal ICP...but then i had a rough time after the tap, i leaked and leaked and leaked. eyes oy!

a little ashamed but i really never pursued treatment for it.  i mean, i have seizures sometimes but they have aura to them & 9 times out of 10 i can get myself ready to take a spill to the floor.  but no bad headaches really, except when i take certain medications.  i have vision trouble sometimes (blurry, trouble reading, HAPPY TRAILS).

i guess really what i' saying is that i don't find it too annoying to take action.  i do have an anual MRI to check it & make sure nothing's screwy.

my PCP wants me to eventually get a consult with a neurosurgeon (he thinks a lot of what's going on might be Chiari related).

i've even been guilty with slacking off with the MRI's.  it's like...I KNOW IT'S THERE! 

i suppose if the RA wasn't all consuming i'de be in a different mind set, but the chiari isn't causing anything in me that's life threatening and honestly...i don't know too much about it!  nono no excuse i know. nono

excuse my ignorance but what is "tic"?  the abbreviation isn't coming to mind.

what treatment has your daughter been on for PsA?

take care,

erin

Posted 7/3/2006 12:56 PM (GMT 0)
MELISSA dR said her diax is "psoriatic "
And you say on this thread its "Posoriasis "
Are they the same?

Just noticed that , maybe they are 2 different things

Posted 7/4/2006 7:50 AM (GMT 0)
Katy,

Thank you for the reply.  I hope you are doing well today...

As for your question about the UVB therapy, I opted for it after being taken off of Enbrel instead of going onto another injectable, my PA is being monitored.  For the UVB, I go into the doctors office twice a week and my hands and feet are put in a small machine with lights and exposed for a period of time (usually 1-2 minutes).  The narrow band UVB kills the excess skin on the soles and pamls and it dies and peals off slowly alowing the healthy skin to surface.  So far I have had great improvement.  BUT this treatment CAN NOT be used on open sores...it will burn the sensitive skin.  I am only able to receive it because I have healed my feet enough as to not damage them more.

When my feet were "skinless" and open with sores, I soaked them nightly in Dead Sea Salts and/or Epsom salts (still do if I get cracks or if they feel not so hot).  The salts will help ward off infection, but be sure not to put too much becuase it will sting the open sores, BUT it will keep them clean and WILL help dry out the pussing.  If you want to try a soothing therapy, try wraping your feet in seaweed (you can purchase it at health food stores in dried strips that you can soak in water and then wrap around your feet).  Seaweed has natural elastins and is a detoxifyer and is used to treat swelling.  Try the sea salt soak followed by a seaweed wrap and then allow to dry before dry dressing.

The lungs are also directly connected to the skin (along with the liver and kidneys)...unhealthy lungs mean that the toxic release from them comes out your skin...try some teas like burdock root (it's a blood purifyer, and if your liver is weakened, then your blood could be toxic).  All of these things my help combat the disease from the inside out, especially the flax and fish oils.

So, there are some more natural approches that may help ease the pain...they sure helped me through the worst of it.  You will get better!  You will walk pain free again...hang in there! 

The power to heal is in your mind...and the best way to help the mind heal is to educate and inform it...the more you know the more you can help yourself.  Keep us all updated on your situation...we all feel for you and wish the best!

Aurora

Posted 7/4/2006 10:38 PM (GMT 0)
Hey Razzle.. the skin disease itself is Psoriasis... the type of arthritis you get from it is Psoriatic Arthritis... How is your daughter doing? What meds does her doc have her on for the PA? I have had Psoriasis for 16 years now and just recently diagnosed with PA, but I know some people that have been able to have children with PA, it just depends on what meds she is on... Good luck to you and your daughter.. hope to hear from you soon!

Duck
Posted 7/4/2006 10:39 PM (GMT 0)
Katy - how are you? Please let us know how you are doing.. Duck
Posted 7/9/2006 6:05 PM (GMT 0)
Hi,This is Katy,I have some very bad problems,since i last chatted with ya"ll,the puss bumps that i told you about, have now gone up to my legs,stomach,and my underarms.i am taking Enbrel Injections 50 mg.can this be a side affect?or infection from husband popping the ones on feet with a neddle? Please response,to me quickly,i am Freaking out. what should i do?                                              i have psoriatic arthritis,.c.o.p.d.,herianed dics,ashma,otheoarthritis, deteration of spine and hip,and much more that can not spell. thanks ya"ll for being here. God Bless each and everyone of ya"ll
Posted 7/10/2006 11:37 AM (GMT 0)

Hi Katy!  I just had to respond to your post from yesterday (everyone else must have been away from their computers I'm guessing).  I'm no doctor (used to be a nurse if that helps), but you really need to see a doctor ASAP.  It sounds like it could very well be a staph infection, as I think Erin mentioned earlier.  You don't want that getting into your bloodstream!  Please treat this seriously and get it looked at right away!

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