Re: PA without psoriasis

[Guest guest]

Hi Alison.

Thanks for replying and clearing that up.

More and more I'm beginning to think that my reumatologist is a

flaming idiot with less knowledge about PA than your average dung

beetle. He told me that it was only because of my psoriasis that

he could be sure that I had PA. So much for that...

<Beginning of venting...>

I wish I could just relax and take what doctors say at face value.

I realize that doctors are just people but sometimes I forget that

the same jerks that give you directions to an unknown location, or

spout bull about current events they know nothing about, could have

just as easily gone to medical school as anywhere else.

I find myself staying after work on a regular basis and surfing the

Web for information just so that I can argue intelligently with

them and figure out exactly what questions to ask. Sometimes I feel

like having an illness means you need to obtain a medical degree.

I already work with leading-edge technology that requires almost

constant learning and now I find myself spending most of my spare

time reading medical journals and surf medical sites. I know that

learning new things exercises the mind but this is ridiculous. I

swear sometimes I get so tired of learning I just want to scream!

<Ending of venting.>

Thanks again for the info Alison and thanks for letting me get that

off my chest. ;-)

Sincerely,

Gayle

> Marcie recently asked about her husband having PA but not P, and

> Gayle wrote that she didn't think this was possible. It is

> possible - a small percentage of people with PA do not have P at

> all. Often, there is P in the family (as it seems for Jerry),

> but sometimes there isn't even that.

>

> I don't know what the percentages are, and I think it is pretty

> small, but it's certainly medically possible so Jerry needn't go

> looking for the P - if it comes, he'll know, and if it doesn't,

> then lucky him!

>

> Marcie might also be interested to know that only about 5% of P

> sufferers develop PA, so her brother-in-law has only a small

> chance of getting PA too.

[Guest guest]

My brother and I both have psoriatic arthritis without psoriasis. It

happens, but rare. If it makes it any easier, the treatment for PA is

almost identical to RA. Sometimes they are very difficult to

distinguish, especially in a patient without psoriasis and negative

RA. If it helps, I have had PA for about 6 months and finally started

Remicade 3 weeks ago. After two infusions I'm completely off

prednisone and Mobic. My rheumy hopes to get me down to only Remicade

and methotrexate soon. I feel great! Not like before PA but better

than I have felt in months. Very little to now side effects.

Good luck. I hope you find something to help.

" Sheridan " <sksherid@...>

[Guest guest]

The psoriasis part is very confusing. I had no signs of Psoriasis when I was

diagnosed with PA, but I did have a periodic breakout of red spots that I

thought was a rash around my ankles which I treated with an ointment which

seemed to help. Also, I had some unidentified tiny bumps in my scalp which

turned out to be Psoriasis. The only way I finally identified the Psoriasis was

a scaly patch on the top of my hand.However during this period my PA was? quite

active and I have already had the joints in my right hand disintegrate.My feet,

hands and knees are also? affected.My toes have become quite ugly. I would

advise you to keep an eye on any red spots that itch far more than they should.

God Bless and stay well.

Walt

[Guest guest]

I've never had psoriasis and was diagnosed with psoriatic arthritis based on

1) the looks of my fingers (swollen and bent part way - couldn't straighten or

bend them - due to the tendons being inflamed, NOT the linings of the joints, as

in RA),

2) inflamed sacroiliac joints - diagnostic for the spondyloarthropathies, and...

3) my grandparents came from Lapland, my Dad had chronic colitis while alive,

and my cousin was thought to have RA. The last 2 folks died before I was

diagnosed, but the incidence of HLA-B27 is very high in Laplanders, about 25% of

the people! Which, I think explains why the Finns are such a dour bunch: they're

in pain!

Hello everyone I am new to your group and was hoping to find some

answers. I have been treated for what I thought was RA for the past

ten years and have been having some difficulty with meds and allergic

reactions. Today I went to see my old Rheumy who had originally

treated me before moving on to another hospital. I was hoping that he

would be able to help me get this flair under control. Long story

short, during the conversation today he told me that I had tested

negative for RA but that I had seronegative inflammatory arthritis,

HLA-B27 positive. He said he felt I had Psoriatic Arthritis. This

confuses me because I have never had Psoriasis. Is is possible to have

PA and never have psoriasis?

Any info would be appreciated. Thanks for listening

[Guest guest]

- my P (which came long after the joint pain started) began as

dry skin on the palms of my hands. My family doctor said it was

eczema, but it was really P. They would crack and bleed. I was

wearing cotton gloves all the time. After a couple of years, it

started happening on the soles of my feet, too. Things went downhill

fast at that point. Please start taking some of the good drugs for PA

before your situation gets any worse!! I wish I could have gotten on

top of this before it spread to my feet. Now I had to close down my

business and go on social security disability because I cannot stand or

walk for more than a few minutes at a time. I'm a lot better since I

started taking MTX and then Humira, but we have never been able to get

my feet clear and my ankles are shot.

best regards,

sherry z

[Guest guest]

Sherry,

Sorry to hear that this has affected you in such a way. I am

searching now for some type of meds that will help. As I said before,

they have been treating me for the past ten years but I thought I had

RA. The problem that I am running into is that I have had allergic

reactions. I had a near anaphylactic reaction to Enbrel (which was

really helping) and MTX caused me to have shortness of

breath, hoarseness, and chest discomfort so the allergist said that I

should not be taking that either. I have had anaphylactic reactions

in the past to other meds. My liver levels were really high so they

took me off everything except the Plaquenil and I will get the blood

work back on Monday. Then they will decide what to try next.

Have you had good luck with any other meds besides MTX My feet are

also shot. I had surgery on the right foot in 2004 and it is already

back to pre- surgery condition. Have you ever considered surgery for

your feet? Did the cracking on your hands happen on your knuckles and

tips of your fingers?

Thanks everyone for listening.

[Guest guest]

- I'm not surprised to hear that you have neck and low back

involvement. HLA-b27 is a marker for ankylosing spondylitis, a form

of PA that particularly attacks the spine although it also can

affect any other joint too. You don't necessarily have AS, but they

will likely suspect it. The good news is that since you have that

gene marker they will probably treat you more aggressively more

quickly! That means you should get approved for the better meds more

quickly and hopefully have less trouble getting approved by your

insurance company for them. The other good news is that these drugs

work well (once you find the right one for you) and they do slow or

even prevent progression of the disease, so don't panic when you read

about possible joint destruction or spontaneous spinal fusion. Work

with your rheumy and you should feel better real soon.

best regards,

sherry z

[Guest guest]

Hi ,

Do you find any relief with meds? What type are you taking?

[Guest guest]

, MTX helped me but I had to go off it due to high liver

numbers. For over a year, I've been on weekly Humira injections.

That is double the normal dose. I've had no side effects at all from

Humira. They have helped greatly but my soles have never cleared and

I continue to have moderate to severe flares from time to time, plus

some residual pain that rarely goes away completely. And if I stand

or walk for more than 15 minutes, the pain is very severe. X-rays,

thankfully, don't show need for surgery anywhere at this time and

hopefully never since the Humira should be preventing that kind of

damage. Some of the pain in my feet is from the open sores and deep

bleeding cracks from P. Some of it is from the arthritis,

particularly in the ankles and toes. Some of it feels like plantar

fasciitis trying to creep back, but I do daily exercises to help

prevent that.

I had no P on the tops of my hands, just the palms - and it started

on the fingertips and then spread down the fingers and thumb. Humira

has cleared my palms completely! I wish it would do the same for my

soles, but it doesn't look like that is going to happen.

regards,

sherry z

[Guest guest]

Joanna - it was the only sign of P for me until the same thing started

on my soles. I've never had typical plaque or guttate P. So, yes, it

can be a form of P. According to my derm, palm and sole P is even more

difficult to treat than other forms. When my family doctor

misdiagnosed it as eczema, I developed contact allergies to several

things because of it. She had me applying skin glue to seal the

cracks, which caused an allergy to one the components of rubber. She

had me using neosporin ointment to prevent infection and I became

allergic to neomycin. Like I needed those extra complications!!! I've

dropped her and gotten a new general practice doctor. Be careful what

you use on broken skin, everyone!

regards,

sherry z

[Guest guest]

,

The fact that you tested positive for the HLA-B27 gene and sero-negative

for rheumatoid blood test but have pain in your tendons/sacroiliac joints

would qualify you. I tested negative for both the HLA-B27 gene and

rheumatoid blood test but had bilateral joint pain in every joint in my

body. That qualified me for Psoriatic Arthritis. I also had scalp rashes and

mild Psoriasis all over my body which gets worse in the winter time. I was

first put on Plaquenil by my Rheumatologist and it made my mild Psoriasis

worse and that is what enabled her and a visit to the Dermatologist make a

definite diagnosis of PA. She immediately took me off of Plaquenil and

started me out on the road to a number of Nsaids. Now I am on Enbrel and

Methotrexate. With me, the rashes came first about 10 years before the joint

pain, but I did not know that it was Psoriasis. I thought I was allergic to

shampoo. I have a small patch above each eyelid that bugged me since I was a

teenager. I thought I was allergic to eyeshadow. The dermatologist looked

at my nails and I also have ridges. My toe nails also have ridges and have

always been soft. I have Psoriasis between my toes, I thought it was

athletes foot. My elbows have always been “rough’’. That is Psoriasis.

All of the places where I have Psoriasis, I also have joint pain.

Some people may not think they have Psoriasis but they do. A dermatologist

can spot it quickly. You can have a mild form all over your body that flares

up now and again. Mine flares up about once a month around my period. I have

to coat my body in steroid crème. Because I itch. In the winter my hands

and elbows are bad they get sores and the skin gets cracky .

I am ¼ Swedish. My Swedish Grandfather had arthritis but we think it was

Rheumatoid, since he had Rheumatic fever as a child. He died when I was 3 .

My grandfather on the other side of the family had arthritis too but we do

not know which kind.

Beth Madron

\

[Guest guest]

Beth - I just have to say that I would disagree with the comment

that dermatologists can spot P quickly. I think that they are just

as confused about it as we are. We have seen 2 derm's now and one

said Grant had P and the other said it was Eczema. I think that it

gets misdiagnosed a lot. There is a skin biopsy that can be done to

test for the psoriasis though. Now that Grant is on Mtx he doesn't

get flare ups anymore so we have nothing to get tested to find out

for sure.

I do have a question about the nail ridges. Do they come and go or

will you always have them once you start getting them? Grant has

had times where he has had nail ridges but then they become smooth

once the bumps have grown out. Not sure it its P or if it is from

just getting banged up with all his activities.

& Grant (11, PsA/Uveitis)

--

[Guest guest]

- has your derm seen your thumbs when they've been like that? My

palmar psoriasis started with the tip of one thumb, then the tip of the

other thumb, then spread one by one to the index finger, next finger,

etc. After it affected all but the pinkie tips it started slowly

working down in inside of the fingers. All of this took several years

to develop.

Thankfully, Humira has cleared the hands completely. No one recognized

this as P, but it is.

Years ago, I had very dry feet and then got a deep crack under the

little toe. They thought I had a bone infection for a while, then they

concluded I must have been bitten by a brown recluse spider. When the

P started on my feet, guess what? It was exactly like that episode I'd

had years before. Again, no one recognized it as P until it had been

going on for years and finally began to look a little more like the

pictures you see online for PPP. But really, it has never really

looked just like any of the pics. Unfortunately, the Humira has not

ever cleared my feet, although they are better.

I'll be surprised if what you have on your fingers is not P. By the

way, this on my palms and sole and fingertips is about the only P I

have or ever have had.

best,

sherry z

[Guest guest]

, the nail involvement can come and go, and not always matching

the flares and remissions. I've had the nails bad when the joints have

not been so bad and vice versa. Go figure. Just as confusing as

everything else with this disease.

regards,

sherry z

[Guest guest]

,

You mentioned waking up without having any feeling in your hands. I

sometimes lose feeling in my hands, especially at night, and sometimes

my left arm hurts terribly. I've had inflammation in my wrists and

worn splints but I wasn't really having the wrist and hand pain just

losing feeling and arm pain. The rheumy thought that I might be having

pinched nerves in my cervical spine so he suggested getting a soft c-

collar at the drug store and sleeping in it. It really worked. I'd

wake up without having the arm pain and numbness but by late afternoon

it would be back again. I wore the soft c-collar at home all the time

for a couple weeks and that seemed to get things under control so then

I started sleeping in it only. It was hard to get used to but well

worth it. Now I can tell when things are starting to flare up again

and start sleeping in the c-collar before it gets too bad.

Angie

[Guest guest]

I was also told by the dermatologist that P was difficult to diagnose.

She said that while it " looked " like the things she was seeing were P,

they only way to be sure what through biopsy.

Angie

[Guest guest]

, I bet both episodes (fingers and toes) were undiagnosed P. The

next time this happens, show the derm and tell her you've heard from

other folks with PA that this can be a form of P. She might want to do

a simple skin biopsy to confirm, or she might not bother. But just to

close the circle, you might prefer to know for sure - it would help

this whole PA thing make more sense to both you and your rheumy,

wouldn't it?

regards,

sherry z

>

> No, no dermatologists has seen my split fingers - good question.

[Guest guest]

Angie, That is very interesting, I am open to anything at this point.

I will take a trip to the store and see if I can find a collar and

give it a try. It is taking longer and longer to get the feeling back

in my hands in the morn. I have trouble washing my hair because I

can't really feel my hands. I have been sleeping with a special

pillow to see if that would help my neck. I do have degenerative disc

disease, on top of everything else. Thanks for the info