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Date: 08.03.2012
From: Aylaaa

Subject: Im just get worse..

Hi, Im 13 years and I have Polyartikular Juvenile Arthritis. I have pain in every joints inn my body and cannot remember last time with no pain or yes I can that was when I was on Prednisone but cause the side-effects i just used it for some days. Since the Prednisone workeing as well the sat me on Methotrexate after six monthes with no effect and I could not do anything the days after the mtx cause I was so sick of the mtx they gived me Folic Acidad but I noticed no difference Afipran (10mg) and then Ill be better but was still a bit queasy but cause I not have no effect of it they switch me to Ebetrex (20mg) a half year on it but even no effect so no Im on Humira (40mg,every another week) and Methotrexate (maintanance dose)But now I am so bad as Ive never been before. My joints are swollen,hot and realy stiff and everything hurts..I try to sleep away the pain but because of it I cannot sleep I almost cant go..

I have tried the most NSAIDs meds I have tried to use it parnament and mixed it .. I know it is suspected to have an injection into the knee to remove fluid.. Ive done it a few times before but after three weeks my pain is back again.

- Im so thankfull for answers:)
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Date: 08.03.2012
From: rhona

Subject: Re: Im just get worse..

Hi Aylaaa, I am so sorry to hear that you are in so much pain and at such a young age, It can sometimes take a wee while to find the medications that suit you best and hopefully the Humira will help you soon. Sometimes when the methetroxate makes you unwell they can give you it by injection and then you shouldn't feel sick. Perhaps you could get someone to call the hospital and ask if they could give a steroid injection that helps all over until the Humira kicks in. I really hope you feel better soon, in the meantime try and keep your chin up, sometimes it can help to listen to music when you feel tired and try and eat as well as you can. sending you a big hug xx
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Date: 08.03.2012
From: bsk

Subject: Re: Im just get worse..

Hi Aylaaa, sorry to hear you are struggling so much. I've gone from drug to drug, always with problems so know what it feels like. It does take a long time with some people to find the ones that work. Easy to say be patient, harder to do!

I find if I can distract myself it helps. I listen to the radio a lot when I'm feeling really bad, read and talk to my friends on the phone.
They will get the right meds for you but it very hard on you at your age. Sending you a big as well.
xx
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Date: 10.03.2012
From: Aylaaa

Subject: Re: Im just get worse..

Thanks for your answers and tip :))
Im should ask my mom If she can call the hospital.. cause Im dont clear it anymore, Im not very swollen but a bit hot and my joints hurt very much (most my knees) and its very scary becuse sometimes when the pain is worst Im getting blackout..
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Date: 10.03.2012
From: lynnr

Subject: Re: Im just get worse..

I'm really sorry to hear that ur struggling u are so young and it's not fair on you I like u have pa in most of my joints and know the pain you are going through I am flaring at the minute and the dr or my nurse doesn't seem to b able to help I find this forum great and it helps to know there are others like me I am 35 and just could not imagine coping
with this at ur age keep you chin up and if u need to come on here and rant then u do that.
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Date: 11.03.2012
From: davina

Subject: Re: Im just get worse..

hello aylaaa so sorry your going tho this at your again i thought it was bad enought at 28 but at 13 this is not fair. c
go to your gp they maybe able to get you into have a steriod infusion which would help you greatly. xxx
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Date: 12.03.2012
From: Viv

Subject: Re: Im just get worse..

HI,

I have osteoarthritis and doing some natural stuff. Try to see if nettles capsules, flaxseeed and liquid glucosamine works for you. Even pomegranate juice, walnuts and cherries are supposed to be good for inflammation. I am so sorry you have to suffer from arthritis at such a young age. I also use frozen peas on my knees as well as heat. I wish you the best.
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Date: 12.03.2012
From: bsk

Subject: Re: Im just get worse..

Glucosamine isn't proven effective for inlammatory arthritis Viv. Arthritis Research Uk (I think it's them) has a comprehensive complimentary medicine section with lists and research results for both OA and Inflammatory arthritis (RA and the like) which is very uesful. But Alyaaa, do check with your doctors first.
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Date: 13.03.2012
From: Viv

Subject: Re: Im just get worse..

I forgot to mention Hylauronic acid capsules. This is the same stuff they use for synvisc shots except my insurance doesn't cover it, so I never tried it. I didn't realize this was a UK site though I am from the US. That's ok your meds are probably ahead of us. I used some topical gel called Voltran, but it didn't do anything for me, but costs me $40!
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Date: 13.03.2012
From: Aylaaa

Subject: Re: Im just get worse..

Thanks for all your tip :))
My Doc Told to call back today but havent heard anything.. So if not he has called before before ten tomorrow my mom gonna call up..

I was home from school today,suck as boring thing but my pain was so big and Im nearly can stand.. But it was my fault I tried to play soccer yesterday (I taked parlagrin forte before I played) but I could not do so much the pain stopped me and when I arrive home was very swollen knees and warm same with the second paragraph Especially elbows and ankles, beacuse that I have some servere problems with sleeping Im also have my MTX day so I have been a bit "sick" today but it was better than normal :)

But a good thing is that the swelling has minimized a bit but the pain is the same..
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Date: 18.03.2012
From: louloubelle

Subject: Re: Im just get worse..

Hey Aylaaa

I was 9 when I was diagnosed with PsA! I totally understand how horrible it is being young and unable to keep up with your friends. I very rarely did sports at school and would need to put ice packs (well, frozen peas) on my knees and ankles after doing too much running around!

I find that, when I feel all hot and achey and ill with the discomfort that having a warm bath helps and I make sure I kept toasty warm too and wear thick socks and snuggly sweaters.

I'm 32 years old now and although I still have arthritis the doctors have been able to find a medication that suits me. I had a son 18 months ago and I'm starting university in September (I felt too ill to think about going to university when I was 18) - if you miss out on stuff while you're young, don't worry 'cos you always have the opportunity to do it later in life!!!

I would say that you have probably got a tough road ahead, especially as you'll be growing in height very swiftly in the next couple of years, I found them the most difficult years so you're probably dealing with the condition at it's worst at the moment. But the good thing is, it does get better, and like me I'm sure you'll be able to live a full and active life.

Like you, I was unable to take part in sports at school but, aged 22 I explored the valley of the kings and the temples in Egypt!!! Then, about 3 years ago I climbed the biggest, rockiest hill ever!... wihtout any pain or discomfort.

Keep your chin up, a smile on your face, friends and family close and focus on the things you can do and you will go far :-)

All the best Aylaaa and if you want to ask me anything than I will be happy to reply.

All the best hun

Lou x
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Date: 18.03.2012
From: Aylaaa

Subject: Re: Im just get worse..

Thank you for Your answer:)
You gave me hope and I am incredibly grateful for. It seems that the bad periods should never go over knees, elbows, ankles and wrists are quite swollen and hot otherwise I have pain everywhere .. Shall take Humira on Monday (dread, but try to think of something else when there is a little better) and I will take blood samples and measuring inflammatory activity but it has never been high shown that when there are things to run but in the meantime I have to wait for anything to work Humira .. I also ibux and paracetamol which I shall try now (going crazy've tried it before but I can only give it a chance)
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Date: 18.03.2012
From: Em

Subject: Re: Im just get worse..

Hi Aylaaa, I just want to say I am thinking of you and hope something works for you at some point. I got R.A at the age of 26 but 13 is so young. I hope you don't get too down and I know it helps sharing your feelings on here. Stay Positive. Lou's comments must give you hope when you read them, lot's of love, x
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