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Date: 13.11.2010
From: Lauren

Subject: Psoriatic Arthritis.

Hello everybody my name is Lauren this is my first post have never done anything like this before but I feel like I have to talk to people who can understand how I feel.

I'm 19 years old and I have had Psoriatic Arthritis for 5 years it all started with a pain in one of my fingers which I assumed I must have knocked so I ignored it for a while then more of my fingers starting hurting and the swelling and stiffness started so I went to the doctors they sent me away telling me it was 'growing pains' then my knees started also most of my other joints including toes, hips, elbows, shoulders and neck I was in horrific pain and didn't understand why as a 13 year old I had this, i began to realise very quickly that i had arthritis but because of what the doctor told me my parents thought I was always exaggerating the truth aswell, nobody atall understood how I felt and it was frustrating at that age when it got to the point where I couldn't get out of bed because the pain was so bad I went back to the doctors where they refered me to a specialist they put me on painkillers in the meantime.
When I saw the specialist the diagnosed me with Psoratic arthritis which I knew all along by researching on the internet of my symptoms of psorias and joint pain, so they talked to me about all kinds of treatments I tried quite a few that just didn't work for me and I am now taking methotrexate which I have been on for 4 months I take 20mg weekly and I have seen no positive effect atall so far they told me I would feel a difference within 3 months, I just don't know whether the side effects of this drug are worth me taking it anymore. I still take all my painkillers including - diclofenac, Zapain and tramadol and nothing seems to be working i'm just feeling the bad effect of the drugs, i wouldn't mind if my joints felt better but they don't. I'm going to see the specialist where they are talking about putting me on injection forms of methotrexate so i'm hoping this will maybe work better for me.
It's just really frustrating having this when nobody understand because I don't look ill. I never complain to the people around me it would just be nice to speak to people who understand how I feel.

Would appreciate any advice from anybody.
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Date: 13.11.2010
From: louloubelle

Subject: Re: Psoriatic Arthritis.

Hi Lauren, welcome to the forum - everyone on here is really nice and so supportive. We all understand exactly what it's like 'cos we all seem to have similar experiences.

I also have PA and was diagnosed when I was 9 years old. I'm now 31 so can absolutely understand what it's like to be a teenager with an old lady disease.

My advice to you is to stick with the medications prescribed for as long as you can, even if they aren't working yet but keep in touch with your rheumatologist regularly telling them exactly what you are experiencing. It has been my experience (and maybe I am lucky to have such a caring rheumy) that they will bend over backwards to find a treatment that works for you.

Also, I find it helpful to tell people about your condition. It saves a lot of awkwardness when people find out third hand about your condition and they tend to jump to conclusions.

I find that discussing it "normally" like you're discussing the weather, friends and family may be more understanding - it works for me anyway. Also, the more i have talked to friends and family, the easy I find it to discuss with others - like work colleagues. It is important that they feel comfortable to talk about it so they feel able to ask you questions. It's a pressure on you to have to talk about it as though it is normal but it is worth it. I hope that makes sense - you just need to be confident and candid about it all, other people will appreciate it!

People's lack of understanding is what can make you feel isolated so if you are open and honest with people they may be more underdstanding. People seem to assume that only old people get arthritis and that it is just swollen and achey joints - most people don't realise how painful and debilitating it can be, but also how tired it makes you and how you can feel ill all over, not just in the joints and how low it can make you feel.

I'm a really positive person and I think it has helped me to tackle my condition (and all of the other shite I've been going through lately). It's not always easy but always look forward and keep positive as much as you can.

If you have any questions then do not hesitate to ask, I'm happy to help and I am sure there are plenty of others on here too.

Take care hun

Lou xxx
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Date: 13.11.2010
From: Lauren

Subject: Re: Psoriatic Arthritis.

Hey Lou thank you for your quick reply :)

I'm sorry to hear that you've had arthritis from such a young age.

I'm gonna stay on my methotrexate until my next hospital appointment where they can hopefully find a better alternative I agree with what you said they are very helpful,ugh better than any doctor I've ever spoken too, what treatment are you taking just out of interest? I know everything works different for different people but I like to hear what works for other people.

I talk to my family and close friends about it most days in a casual way, but thats because they know the severity of it already and they've seen me at my worst I don't like to talk about how bad it gets because it does tend to get me down I try not to think about it atall really.

When it comes to meeting new people it's very hard for them to understand so I don't really bother telling people atall, because as I said in the last post I don't look ill atall, when I've told people in the past alot of them have just looked at me like I'd just told them the most boring thing and they don't say anything atall, also I find that I tell people and they say 'yeah I get that sometimes too' I'm thinking are you serious? It's not like a cold that you sometimes get that comes and goes it's a horrible painful disease that you would know about if you had it, but yeah that's why I don't tell new people that often it's not thief fault because they don't understand and I don't expect them too so I just talk to friends and family.

I love your positivity and I am like that aswell 80% of the time when it comes to this but I obviously get my down days like everybody else, I was just wondering is there anything that you've changed in your lifestyle like diet or things like that? I would just be nice to know if I could change a few simple things that it would improve a little.

Also one last question are thier any smokers on here because the doctors and specialists are telling me it's playing a big part in my flare ups, just wondering if anybody smokes or has given up and it's improved?

Thanks again Lou
X
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Date: 14.11.2010
From: louloubelle

Subject: Re: Psoriatic Arthritis.

Hey Lauren.

I had to laugh when you said people say "yeah, I get that sometimes". My fella's uncle is the same - he's 57 and is a builder, he's gonna gt achey knees but he seems to think it's as severe as mine - I had my hips replaced aged 21 and 22, somehow I don't think it's the same lol!

As for medication, I have had the whole lot over the years. Mtx worked quite well for me but I was your age and went out on the tiles quite a lot so the inability to drink was off putting. The rheumy put me on sulfasalazine during my party period but it didn't really do a lot for me. I was a real social smoker then too (cos you could smoke in pubs of course) so would chain smoke when out and then not bother the rest of the time - never noticed a flare up as a result of smoking! Although, I would urge you to give up - your body's gonna have a lot of medication over the years - best to be in tip top health I guess... lecture over :-)

I've been on ciclosporin and gold injections too. Obviously, years of anti-inflammatories and pain killers too. Some worked better than others but 8 years ago I managed to get anti-tnf (at the time it wasn't licensed for PA so was a bit of a battle getting it). This was just after my 2nd hip replacement and I honestly believe that if they had put me on it earlier I may not have needed to have my hip replaced, it worked that well for me. I went from having to walk with sticks to hiking around the valley of the kings in the egyptian hills only 5 months later!!!

However, I fell pregnant in January (planned) and had to stop the anti-tnf. I was practically bed ridden for the 1st 3 months of pregnancy as the PA hit me so badly. I was only allowed to take paracetamol and the rheumy injected the worst affected joints with steroids periodically. Thankfully, as the pregnancy progressed the PA improved. I've had my little boy, Oscar now and was expected to go back on anti-tnf but a monumental spanner hit the works during pregnancy. At 27 weeks pregnant I was diagnosed with breast cancer!!! I am over half way through chemo now and the tumor is now undetectable on scans so the news is all good (thank heavens)!

The worst thing though, and people think I have things out of perspective but, having PA I'm sure you'll understand where I'm coming from, I'm not allowed back on the anti-tnf until 10 years after being given the all clear. I was devastated as the drug that works so well for me is no longer available. Even worse news was delivered to me last week - the oncologist won't allow my rheumy to prescribe any disease modifying drugs as he feels that, because I have had chemotherapy and the way that the disease modifiers work on the body, the risk of the cancer returning is too high! If this is the case then I am seriously considering a double mastectomy. I would rather be the woman at the exercise class with no tits then the woman in the wheelchair with the great rack lol

As for making changes to your lifestyle to improve the PA, I would say just try to eat healthily, drink, smoke and do anything else "naughty" in moderation but mainly, I would suggest getting a good balance between rest and exercise. Walk as much as you can without overdoing. Listen to your body - they're very good at letting you know when things aren't quite right.

All the best hun
Lou x
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