Don't do this alone!

[boundaryseeker]

Hi to all from New Zealand!
I am 41, married with 2 girls. I have had psoriasis around my ears for at least 20 years. Over the last couple of years it has spread to my scalp and my elbows and now have painful arthralgia in my neck, shoulders, elbows, wrists and lower back. (I promised I wouldnt sit too long at the computer!)
Two months ago I had to quit sport and leave work because I could no longer "keep up the pace". :(
I feel tired heaps due to the chronic inflammation, and it has really getting me down a bit (ok - a lot). I guess I am still trying to adjust physically and emotionally to it all, find a good specialist and develop my own management plan.
I was encouraged to join up here - So....Hi to all of you! I am keen to find out more about PA, but also to have a laugh, make friends, be encouraged and do the polls here (I have learned a lot already from the results!) so keep posting the polls!!
Dont me shy now, ping me back, would love to hear from YOU!
Cheers
Linda

[SandraJean]

Hi Linda,

Welcome to the boards but I'm sorry to hear of your problems you are having with both p and pa. You have come to a great place with alot of people with alot of experinece with what you are going through too. It's a hard conditions to have. I have both p and pa, with osteo arthritsis and fibromayigia. It definitely can be challeging. I hope you are able to peek thru alot of the different information from many people who have this problem. There is alot of great information here and people who understand. Please keep posting and let us know how you are doing and more people with be on to welcome you.

Take care,
Sandy

[janeaf]

Welcome. I am new to PA also so I will be learning right along with you.

[Geniphur]

I was just diagnosed yesterday with PA. But I went to the appointment prepared thanks to all the help you'll find here. These people are awesome and very encouraging. I feel very blessed to have found them here. Feel free to ask any and all questions you have, there's no such thing as a stupid question! My best advice that I can give to you is to start with a rheumatologist or dermatologist. They are the best and probably have the most experience with P and PA of the wide array of specialists available. Welcome!

[patti2957]

Our stories sound similar; I'm married with a son and daughter, both in elementary school and I'm very involved in their education.
I've had P on my hands, elbows and knees for fifteen years, but not the large patches that plague so many others. Then last spring I was diagnosed with PA; my fingers, wrists, neck, knees, feet, lower back, all very stiff and sore. Trouble moving about and no flexibility at all.
My Rheumatologist started me on methotrexate (mtx), luckily before my joints showed signs of deterioration. Fatigue is my biggest issue. I started a business in 1990 with my husband and now, have 2 employees who have been taking care of the majority of my work!! My rheumatologist said there is a huge fatigue component to the disease, and that the medications (particularly mtx - are you on that?) don't help right away, and sometimes don't really give you energy back at all.
I started back to work a few weeks ago, part time, after taking the summer off to stay home with my kids. I'm having a really hard time - I do one or two things and I'm ready for bed. If it doesn't improve I'll have to rethink that part of my life as well.
Yes it is pretty - OK - really stinky. The thread with the poll on fatigue and depression after mtx was started for me by a "PA friend" who has much more experience on this board than I do. I joined in August and have learned so much and feel part of this wonderful, supportive, funny, open, and wise community.
Welcome from another "newbie," and keep posting! Be sure to find a really good rheumatologist and don't worry about shopping if you don't feel that he/she is knowledgeable, supportive and ready to help. Your dermatologist might be a good one to ask.
best wishes,
patti

[patti2957]

What kind of treatment, which meds and how much, did your RH start you on? I hope you are comfortable with the explanations and info they gave What kind of treatment, i.e., meds, how much, are you on? You are so correct in saying that no question is stupid. When I first started going and my x-rays didn't show signs of deterioration in my joints I thought it meant I didn't need to take the methotrexate, but, my RH said it was to prevent damage, that once the process begins it is irreversible! Did they x-ray your joints?
This site has been a wealth of knowledge - and support, for sure.

Hope you fare well.
Thanks,
Patti


I was just diagnosed yesterday with PA. But I went to the appointment prepared thanks to all the help you'll find here. These people are awesome and very encouraging. I feel very blessed to have found them here. Feel free to ask any and all questions you have, there's no such thing as a stupid question! My best advice that I can give to you is to start with a rheumatologist or dermatologist. They are the best and probably have the most experience with P and PA of the wide array of specialists available. Welcome!

[docmks]

Hi to all from New Zealand!
I am 41, married with 2 girls. I have had psoriasis around my ears for at least 20 years. Over the last couple of years it has spread to my scalp and my elbows and now have painful arthralgia in my neck, shoulders, elbows, wrists and lower back. (I promised I wouldnt sit too long at the computer!)
Two months ago I had to quit sport and leave work because I could no longer "keep up the pace". :(
I feel tired heaps due to the chronic inflammation, and it has really getting me down a bit (ok - a lot). I guess I am still trying to adjust physically and emotionally to it all, find a good specialist and develop my own management plan.
I was encouraged to join up here - So....Hi to all of you! I am keen to find out more about PA, but also to have a laugh, make friends, be encouraged and do the polls here (I have learned a lot already from the results!) so keep posting the polls!!
Dont me shy now, ping me back, would love to hear from YOU!
Cheers
Linda

Welcome, Linda!

So glad you found the boards and that they have been helpful to you. I am sorry that you are in a lot of pain from PA and slowed down from the inflammation. Yes, it does get us down...all of us from time to time. It;s one of the big battles of PA.

I was diagnosed with PA, P and fibromyalgia officially about 3 years ago. It has been both a physical and emotional struggle, but I am still hanging in. I have often said that the most predictable thing about PA is its unpredictable nature. A new pain here, a new joint there....that kind of thing.

So glad that you are here! Please keep us informed about your progress and feel free to write with any concerns or questions. This is an amazing community of support as you are already finding out! I wouldn't have made it without these folks here.

MK

[Geniphur]

My whole story, including my recent meds, is in the thread Welcome Geniphur, or something like that, under the PA Board. I don't feel like typing it again. But I am on Methotrexate starting yesterday. 10 mg per week, a pediatric dose due to my age and my small frame (that's what the rheumy said). I'll let you know my progress. I'm just really glad after all I've been through the past 6 months that I finally know what I have and, thanks to these boards, how to treat it.

[RichJ]

hi boundaryseeker
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[docmks]

Welcome. I am new to PA also so I will be learning right along with you.

Hi Janeaf,

Welcome to the PA boards. I must've missed your earlier posts. We are glad you're here. This is a great community of support and I hope that we can provide you with whatever information or support that you need.

I have both PA and P and am on treatment with Enbrel, MTX and various pain relievers. I also have serious fatigue, migraines and I'm told fibromyalgia as well. My P is almost under control right now,e xcept for some bad places on my ankles. My PA continues to give me problems in my neck and feet, lower back/sacroiliac, and my hips.

I hope you keep on posting. We're glad you joined us.

MK

[LoriASoCal]

I'm glad you made it here. I'm so glad you aren't alone in this and that you found us when you did. I've sorted through this stuff alone for many years and the difference of having others to talk to 'who know how I feel' is remarkable.

Comparing notes with others and reading the polls both on the NPF and our own forum polls has given me comfort, also.

For instance, I don't feel like such a whiner now, about the side effects of my methotrexate, because I know others have a hard time dealing with the side effects of it.

Or finding out from the poll done by the NPF, that there are quite a few of us PA suffers who are having problems working because of the disease. It's a huge relief for me to know this, to have numbers even to put to it. I suffer from major self esteem issues, that go back to my childhood with severe P and the way society and my peers viewed me back then. So losing jobs in recent times, has lashed at those old esteem issues pretty nicely. But because of the NPF, I see that it's not such an out of the ordinary thing for someone with PA to struggle with employment. It's not so much that I am failing as it is- that my body is failing me.

This helps so much, when people are apt to pass stupid judgements on me, such as: "you should have planned your life better" I can say either outwardly or inwardly, that person is just ignorant. Let them plan life better with a full frontal assault from P since the age of 9. Let them slowly go broke as the mind struggles to overcome time and again, each debilitating new twist and turn of this incredibily creative disease. Like the way it seems to work itself around every treatment and come out the winner, eventually. Let them deal with the hard work of just fighting this disease and see how much energy they have at the end of the day to 'plan their life'. So this place helps me put things in the right perspective and be able to tell people's ignorance to 'just bite me!'

Speaking of 'just bite me' have you had an opportunity to read that thread?It's fantastic.

[boundaryseeker]

Thanks heaps to all who have responded. ;)
Great to hear from you and where some of you are at.
Soooo, here's an Update:
I have been for a skeletal bone survey (ponce name for a number of x-rays to see what current condition my bones are in). I was asked to move my body in a number of wierd positions and push my range of motion limits to the max - but hey, if the pics turn out ok, it's all worth it isn't it?
Later today I have an appt to see a Rheumatologist - we will see what eventuates there. It's been good to read up on what possible medications are available these days (I may even impress/shock him with my knowledge!!!)

Linda

Our Day: http://www.worldpsoriasisday.com/

[patti2957]

I'll be interested to see what meds your rh starts you on. My xrays didn't show any deterioration, so I'm lucky. I thought that meant I didn't need to take methotrexate. My doc said it's to PREVENT deterioration. Oh, I said:) I wish I'd found this community sooner, you're right - it's amazing how much you learn here, and the wonderful support. I hope you're xrays (love the skeletal survey term) and the meds give you relief. Let us know!
Patti

[boundaryseeker]

Hi all
Yesterday I had my appointment with the Rheumotologist.
The diagnosis: PA and fibro. I am also anaemic.
He put me on Methotrexate 10mg per week, as well as the anti-inflammatory Tenoxicam 20mg per day I am already on. He also gave me some Folic acid 5mg to take 3 days after the Meth. (I see some of you recommend taking Meth on a Friday so you have the weekend to act as a buffer - so I might try that).
I am also taking Paracetamol & Codeine during the day and night for the pain.
Anyway, I have to get my blood tested before I can take the Meth, and also get a test to see if I have the HLA-B27 thing. (If you aren't sure what that is - just google it) He is also sending me for a bone scan.
I am freaking out about the side effects of the Meth, mostly nausea, as a hate throwing up. I know it takes a while for it to work.
He wants to see me again in 10 weeks.
Linda