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Posted 9/30/2006 12:16 PM (GMT 0)
You know, mine has gotten bad on my scalp again... do you guys think it is maybe the weather?
Posted 10/2/2006 1:04 AM (GMT 0)

You know, my 'flares' seem to vary in the attack places - sometimes it's a scalp breakout, sometimes it's my finger joints, sometimes it is all joints and a psorisis breakout....strange.

I do notice psorisis worsens when the weather changes.

With that, I've been meaning to ask.....one of my tonenails has been white and yucky looking. I THINK it's the psorisis - but what do you do for nails when they get like that?  You don't put the Clobesol (sp?) ointment on it do you? I've had the pitting in my fingernails before and I know you can't do much for that.....

***

Posted 10/2/2006 1:09 AM (GMT 0)
So far (knock on wood) I haven't had any problems in my toenails... I too have gotten the pitting in my fingernails, but not my toenails.... hhhmmmm.... Sorry I can't help you out CaMama... :(
Posted 10/2/2006 1:23 AM (GMT 0)

I hate the scalp thing - i feel so gross and washing it doesn't help! sad   You comb it after a shower and it starts flaking everywhere!

I hope it stays mild and goes away quickly for you Ducky!

I'll have to do internet research on the toenail thing...

****

Posted 10/2/2006 1:58 AM (GMT 0)
Yup, that's how my scalp is right now, and it is soooooo frustrating...
Posted 10/4/2006 1:27 AM (GMT 0)
Hi...I've been reading posts here for quite some time now and decided to bite the bullet and join up. I've found a lot of useful and interesting information that I pass along to my son who was diagnosed with JRA @age 7 (1985), seemed to only be in right knee.Also has the HLB27 marker. Went into remission around age 11.

Then, at about age 20, while in college it all started happening again. Both knees & elbows now. Not real bad at first but annoying and now at age 28 it's full on out of control.
Arthroscopic surgery on right knee in Oct 2005 to see if they could solve the continual build-up of synovial fluid and repair a meniscus tear they found on x-rays. Repaired tear but never solved fluid problem. Has had numerous arthrocentesis procedures on knees and then been shot full of cortisone.
He's been on just about every Rx (Humira, Enbrel & Remicade among others).

about 15 months ago while starting Remicade he broke out in a rash that turned out to be psoriasis! New diagnosis: Psoriatic Arthritis. Nothing seemed to help psoriasis until he finally went for the UV light treatment, that was last March. In May he was switched to ORENCIA but treatment has been sporadic because of recent situation that came about... suddenly on June 11, 2006 he (in CA) called me (in Midwest) and said "Momma, I can't walk". It came on that suddenly. He had lots of problems with knees for the past 5 years but this was the worst ever. I immediately got on a plane and came to CA.

Within a couple of days he was being scheduled for THR. The pain in his hips finally was worse than the pain in his knees. No cartilage! July 20th was the surgery. That went swimmingly, totally healed. Knees still bad, left hip bad and unable to straighten arms out straight. To make things worse he's been suffering with a swollen ankle that makes it murder to walk on. He had numerous Drs look atankle. Yesterday after 8 weeks of it seemingly getting more and more swollen (foot as well) and it moving up the leg, I took him to ER! Wasn't a clot but they said perhaps CELLULITIS, an infection deep in the skin. Shot full of antibiotics and sent home with scrip for 10 days worth of antibiotics. Today it was less swollen but still very painful. Crossing fingers diagnosis was correct.

He has 3 month post-op appt. with orthopaedist end of OCT. Orthopaedist wants to discuss left THR! Has been told knees will need to be done as well! I hope it all goes well for him but with working it's going to be a long haul before it can all be done.

I have to say that throughout all this, his employers have been very understanding of his situation and his workmates are a wonderful & loving group of individuals. Everyone should be so lucky!

His steady RX regimen has been Methotrexate 30mg (week), Prednisone 10mg (daily), Folic Acid ?mg. and Orencia (monthly). Has been his experience that by 3rd week it's wearing off. Last infusion was Aug, next appt. cancelled because nurse that gives infusion quit!. Rescheduled for Oct 6. Can't really say if it's working because he was off it in June - July. Daily multivitamin and LOTS of water. Is experimenting with diet but it's difficult.

My heart goes out to each and every one of you that suffers from these horribly debilitating diseases. I know I've got onset symptoms myself. My mother suffered from it for more than 20 years & my son has an uncle on his Dad's side of the family that was diagnosed at 9 and went into remission but it all came back in his early 40's.

Sorry I'm so long winded here but it helps to let it out. It's been a long 3+ months here in CA...I need a day off. I pray for the day when he might be pain free and I can go home. It's not right that young people should get this or any debilitating or terminal diseases...save them for those that are old enough to be members of AARP! I'd sell my soul to the devil for M. to lead a pain free life. It's been a long while since he's had any joy.
God bless you all.

Jem
Posted 10/4/2006 1:37 AM (GMT 0)
Hi....I am sufferer of Crohns, Psorasis and Psorasis Arthritis.....the psorias is bad in my hair....it is hard to wash and comb off my scalp...I am a Africian American which makes getting rid of it harder...I also have experiencing a flare-up with Crohns in the last 3 weeks...what type of medication is used for the scalp....
Posted 10/4/2006 2:22 AM (GMT 0)

Welcome Jemima and Music Lady!

I'm sorry to hear about your son. I was dx at age 11 w/JRA and it eventually (supposedly) went in to remission as well...then came back horribly at 25 (this was after many years of pain and doctors saying 'it's nothing') I could go on, but long story short, I  am 36 and have psoriatic arthritis now and have a long list of issues. However, nothing compared to your son! Where in CA are you staying? I'm in Southern California. Someone here has recommended a great rhuemy in Riverside, one here in San Diego, and I know of one up in the San Jose/Silcon Valley. Good luck and hang in there! Please come post any time you need, we're all here to help each other out!

Music  Lady - I use T-Gel for shampoo a few days a week, it helps a little. I think there there are other shampoos that work better for some here, hopefully, they can give you some suggestions to try. The doc Rx'd this cortizone liquid to put on my scalp, I rarely use it unless I'm at my wits end for help....it is hard for me to use because it's been so hot here, I'm alway afraid it'll sweat in to my eyes. I swear it makes me jittery too - the ointment for my rashes doesn't seem to, but the scalp stuff did.

Gotta get the little ones to bed....Take care.

****

Posted 10/4/2006 11:45 AM (GMT 0)
Hey Jem - Welcome to Healing Well. Wow, what a story, what a good mom you are. It is hard to go through stuff like this, and I would imagine even harder to see you child go through it. Hang in there and come here and vent any time you need too... Please keep us posted on your son, I would love to hear how he is doing... You and he are in my thoughts and prayers..

Hey Music Lady - A big welcome to you also! Psoriasis on the scalp is just awful isn't it? The shampoo that I use when it gets bad is Pentax. You can get it in drug stores, it is prescription strength, but you don't need a script for it. It is 5% coal tar solution, so I find that it helps for me. I also use temovate cream, for the line, it is a steriodal ointment and you will need a script for that. Please keep us posted on how you are doing! Thoughts and prayers coming your way as well...

Duck
Posted 10/4/2006 6:49 PM (GMT 0)
CaMama & Ducky...thanks for welcoming me.

I completely forgot about M's psoriatic nails...first derm he saw said it was fungus and gave scrip for Lamasil. Waste of money, thank goodness he only pays a $16 co-pay. Lamasil is massively expensive! Almost every toe nail & some finger nails are affected and there doen't seem to be anything that helps :-( I've searched the internet but haven't found anything that is a specific treatment for nails. I guess they get better when the psoriasis does.

I'll update M's condition when there is improvement.

Good Health to you all.

Jem
Posted 10/6/2006 6:57 AM (GMT 0)
Hello all and welcome to the newest members. I am having a flare with arthritis and until my shot of Humira yesterday I had been misrable with the psoriasis. My doctor wants me to give it another month to work. I've been on it for 10 weeks so far, am coming off prednisone which seems to be debilitating in itself and going through personal family problems. I am having blood work regular to make sure the liver enzymes don't go up as the prednisone goes down and my steriod induced diabetes seems to be more managable the lower I get on the prednisone.

I also had a time with my nails until going on the prednisone. They looked awful and even hurt. I don't have any scalp problems. I am very thankful for that. I have lesions on my legs, trunk, stomach, and buttocks. It seems to be drying some, but am dreading the winter with the dry heat if the Humira does not kick in.

Jemm,
You have certainly been through a difficult time with your son. He is so blessed to have you. I know what it is like to have a child with a chronic illness. My youngest daughter has spinabifida, but is very independent, and out on her own. But we went through many trials rasing her so I know the stress you are under.

I am trying to remember the other posts and cannot look back. so If I didn't address someone don't be offended. Welcome to Healing Well. You will find a great group of supportive people here.

Be Well,

Judy
Posted 10/27/2006 6:44 PM (GMT 0)
It's been a while since I posted.

The CELLULITIS dx was wrong. His rheumy looked at all test results and said it's his arthritis.

M had his ORENCIA infusion and a shot of cortisone in his left knee on Oct 6. By the second day the swelling had gone down in foot & ankle and continued to do so for awhile. After a couple of weeks though the swelling in ankle & foot was back with a vengence. By last weekend he was in a lot of pain and this morning was the worst. 1.5 hours to shower & dress. Light treatments for the psoriasis now twice a week for the last 3 weeks. Some improvement but I think stress has a lot to do with it. His job is very stressful with daily deadlines (TV magazine show). His orthopaedic appointment is today and I think he's going to ask for a cortisone shot in the knee (save a trip & $25 to the rheumy) and see if that also helps the ankle & foot. Next ORENCIA infusion is Nov. 3. I hope to get back home to MN on Nov 4 or 5 to turn heat on in house!! I've been here CA) since June. I have a feeling it will be a short trip home and then back here. He's stressing out I think about coping on his own.

Waiting to hear back from USC rheumatologist if M is going to be accepted as a patient. This rheumatologist was recommended by DR from Mt Sinai Hospital/Medical Center in NYC

Question for Judy...What was your prednisone dose when your nails got better & how long did it take? M. takes 10mg a day and has been on this dosage since July.

Wishing you all good health!

Jem
Posted 10/28/2006 2:44 AM (GMT 0)
Actually, for those mentioning Reiter Syndrome/Reactive Arthritis.....it is not always so quickly resolved.

In fact, most people I know have had it for many, many years. In my case it's well over four years.....I know many who have had it for 20 years or more. I know one man who had chronic reproductive/pelvic pain for 40 years and THEN developed Reiter's, having had it now for almost 15 years!

Of course, remissions of Reiter's are supposedly common but inevitably in these support groups we don't hear all that much about it, except from people who only had temporarily ones.

I know that in severe cases, remissions are much rarer unfortunately. I continue to pray & hope for one but I prepare for more of the same, if not worse as this progresses with each passing day....this month I desperately hope my doc will upgrade my medication from Oxycodone to something *more powerful*, if you can believe it. Not just more powerful but better time-released....like Duragesic patches, hopefully. And either fentanyl or Opana for breakthrough pain, I hope. If he's not open to Duragesic then maybe Opana ER I hope?
Posted 10/28/2006 9:12 AM (GMT 0)
Jem,
Hi. I'm trying to remember when my nails started getting better. I don't think it was too long. I was on 40mg though. They are still ok, but I am continuning to have flares with the psoriasis in other place. That started back about a week ago. I had some relief for about 2 weeks.

I'm sorry your son is havng such a difficult time. Good luck with the rhuemy. I hope he can get things going to get your son out of pain.

Judy
Posted 11/1/2006 8:59 PM (GMT 0)

Hello All,

 I am 55 and was diagnosed with Psoriatic Spondylitis about a year and a 1/2 ago. I have seen 2 different rheumatologists. One diagnosed Ankylosing Spondylitis and the other diagnosed Psoriatic Spondylitis. I didn't have any skin lesions at the time of both diagnosis' and my symptoms are so close to being either one that it is very hard to tell which it is....may be a combination of both. I am HLA B27 negative. Aside from the constant pain in my shoulders, back, neck, hips, thighs, knees and heels, constant fatigue etc. a  few months ago I started getting a very itchy round circle on the top of my left foot...since then it has enlarged to the size of a quarter and I now have 3 other lesions  starting to appear in the same area....no other places tho.... I understand that sometimes the pain of the arthritis/spondylitis comes first before the lesions with psoriatic Arthritis, which seems to be the case with me. Living with this awful disease has been a total nitemare. I am taking prednisone and will probably be starting on Humira within the next few months if my rheumatologist still feels its the best way to go for me.  I have been hesitant about starting it because of the risks involved, but as this disease keeps wearing me down day by day I am just really desperate for some real relief from this agonizing experience. I woke up one morning a year & 1/2 ago and had terrible pain in my hips and thighs and for no apparent reason....since that day my life totally changed....things have only gotten worse and this disease has turned my life inside out. The constant severe pain has been so overwhelming at times even with pain meds and prednisone that I feel very discouraged about the whole thing. I am always hurting in most parts of my body. When I have a flare (like I am lately with my right hip and right shoulder & upper arm)  it lasts for days or weeks at a time....plus I feel like I have the flu every day with chills and  cold sweats and when I first wake up in the morning getting out of bed is extremely painful and difficult. Once I am up I can't even believe how bad I feel (I have forgotten what it is like to feel normal).....and this is every single day. I can't turn over in bed without extreme pain in both shoulders and getting into bed and lying down is also a challenging  problem. I get severe pain in my rib cage, sternum, neck, and shoulder blades as soon as I lay down.....so every nite I never know what to expect and where the pain will hit the worst, usually its the entire chest and rib cage area tho.

I find it really difficult to have others understand what I am going thru with this...especially family members, they seem to think since I look ok I must not be that bad off....which is far from the truth....real far.   Most people have never even heard of Ankylosing or Psoriatic Spondylitis...(I know I sure hadn't heard of it ...and when I was diagnosed....I remember saying to the dr..... Anky what??) I guess its really hard unless you have the disease to understand how awful and severe it can be. It sure is putting me thru hell.

Thanks for listening.

Wishing everyone good health,

Jonathon

Posted 11/3/2006 12:24 AM (GMT 0)
Hey Jonathon - Welcome to healing well.. we are so glad to have ya.. sorry you are having to deal with this.. and I know completely where you are coming from, I had never heard of PsA before or AS or Spondylitis for that matter.. now I could probably write a book about it. hang in there and keep posting... we are all here for you.. Duck
Posted 11/3/2006 1:08 AM (GMT 0)
Thanks Duck, for the nice welcome!.... I'm glad I found this site and I will look forward to posting :-)
I'm learning new things everyday about this AS and PsA and they sure are strange diseases. It will be very comforting to be able to share experiences with others who truly understand what its like to live with this day in and day out.
I hope you have a great evening!
Thanks again,
Jonathon
Posted 4/26/2010 4:07 AM (GMT 0)
hi my daughter is 9 and is diagnosed with jra and psoriais and also hlb27 positive she is on enbrel now and methrotexrate and she is still not doing better can anyone recommend anything
Posted 5/25/2010 4:34 AM (GMT 0)
Hi,
I am new to healing well, but found my way in.

I was shocked to not find a link for psoriatic arthritis, since it is a autoimmune and the % of people with psoriasis and PA are rising.

I got excited to find this, only to find that it hasn't been written in since 2006.

Camilla, you will find that the rhuemy's tend to treat conservatively, and add meds slowly. Many meds take time to work. I have psoriasis, psoriatic arthritis, and fibromyalgia. I am on methotrexate and enbrel. It does not make me pain free. But it is holding me, I am not getting worse.

What exactly do you mean by she is not doing better?

I am an RN but I cannot recommend any drug. You will find that her rhuematologist will be your best friend. If she has not improved, make an appt to see him and voice your concerns. He can tell by bloodwork, and physical exam how she is doing. There are many, many meds, and it might take awhile to find the right combo. It does take time, and then we also can get flares, and require some temporary meds.
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