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  #1  
Old Mar 20, 2005, 11:02 AM
Mandarella's Avatar
Mandarella (Female)
Registered User
Join Date: May 2004
Question Psoriatic Arthritis

I have just been newly diagnosed with this autoimmune disorder.
According to my bone scan, it is in all of my joints except my elbows. I have such pain in my hands, feet and back and my shoulder blades tingle and sting.
Their recommendation as of right now is to start Enbrel injections once a week.
I am 29 have a 1 and a 2 year old, and would like to have another baby in a few years.
I hate to take ibuprofen when I need it. I am terrified to take Enbrel, a possible side effect is lymphoma. I don't want to trade one set of problems for another and I need to be around for my children. I was told the lymphoma risk is small, and that it would be safe for me to go off to try to have a baby when I am ready. I also fear possible birth defects. My other drug options are much worse, Enbrel would be the "safest" bet.
What I want to know is, does anyone here have this? If so, I would like to speak with you further on your treatments etc. You can email me privately if you like.
OR, does anyone take care of patients with this condition around my age? It is in my SI joints and they say it is possible that it will spread to my spine and fuse the vertebrae. If so, how fast is the progression if I decide to let this ride it's course. I would like to try a more natural way to try and help this first before I dive into meds...I have just stated to do yoga and eat a little healthier...wishful thinking...
Thanks for your input,
Mandy

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  #2  
Old Mar 20, 2005, 11:40 AM
Registered User
Join Date: Aug 2004

My mom had psoriasis and it went to her joints. It almost crippled her overnight! She was in horrible pain, and could not walk on her own. We went to the dermatologist and got her psoriasis cleared up and she has been on methatrexate for two years. She was back to her normal "run around" status soon after starting the meds. It is amazing that psoriasis can go to your joints like that.

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  #3  
Old Mar 20, 2005, 04:13 PM
Marie_LPN, RN's Avatar
Marie_LPN, RN (Female)
The Black Sheep
Join Date: Jun 2003

Wow, i had never heard of this. I'm going to read up on it, and if i find some informative sites about it, i will post them here.

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  #4  
Old Mar 20, 2005, 04:16 PM
Marie_LPN, RN's Avatar
Marie_LPN, RN (Female)
The Black Sheep
Join Date: Jun 2003

http://www.arthritis.org/communities.../msgboard.aspx

This is a page of message boards, it might help to connect with others that have this condition?

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  #5  
Old Mar 20, 2005, 04:20 PM
Marie_LPN, RN's Avatar
Marie_LPN, RN (Female)
The Black Sheep
Join Date: Jun 2003

http://groups.yahoo.com/search?query...c+arthritis%22

This is another page of search results for message board for people with psoriatic arthritis.

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  #6  
Old Mar 20, 2005, 07:32 PM
Mandarella's Avatar
Mandarella (Female)
Registered User
Join Date: May 2004
Thumbs up

Thank you Marie LPN, you're a sweet heart. I have some info I will send you, I have poured over the internet for hours & hours trying to make a decision...

Those sites look great, I will get into them tomorrow after my appointment.
Thanks again!!

Originally Posted by Marie_LPN
Wow, i had never heard of this. I'm going to read up on it, and if i find some informative sites about it, i will post them here.

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  #8  
Old Mar 21, 2005, 07:09 AM
Mandarella's Avatar
Mandarella (Female)
Registered User
Join Date: May 2004

Those websites were amazing...scary, but amazing just the same. Those pictures are exactly where I do not want to end up as. Thank you.

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  #9  
Old Mar 21, 2005, 07:44 AM
imenid37's Avatar
imenid37 (Female)
Senior Member
Join Date: Mar 2002

I don't really have any advice, but I hope you are able to sort through this. My daughter was diagnosed w/ Still's Disease at age 8. It is a systemic form of JRA. I was really devestated. She took lots of scary meds including very large doses of steroids. Now 9 years later, she is med and symptom free. She has a terrific rheumatologist and we tried (it is very hard) to keep a positive outlook and live life as normally as possible. Although she is only 4'9" tall, she is active and healthy over all. We tried so many meds and combinations of meds. She started w/ one doctor who was a real twit despite being associated w/ a very prestigious medical institution. Her other doctor, didn't have a big name behind him, but has a big heart for patients and open mind. I wish I could describe to you how horrible it was compared to how much better it is now for her. I would've never believed my daughter would be healthy and normal. I used to drive home from work and wonder what would happen if and when she died. I wish you the best. I hope you find a great rheumatology team. She also participated in a supervised exercise program to preserve her joints and keep her weight in check. Everyone knows that cancer and heart disease are devestating, but few people are aware of how arthritis can impact your life. The Arthritis Foundation can help with literature and classes and support groups in your area. I will keep you in my thoughts and prayers.

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  #10  
Old Mar 21, 2005, 08:58 AM
Quickbeam (Female)
Registered User
Join Date: Apr 2003

I have JRA with another form of arthritis for good measure. I can attest to the fact that weight control is vital. A weight gain that wouldn't bother someone else geometrically increases my pain.

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Psoriatic Arthritis

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