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Date: 12.01.2010
From: kylee

Subject: sero negative and diformaties help

hi all i am 23 yrs old and was told i have sero negative arthritis 4 yrs ago. i was put on sulfasasaline at the begining but this didnt help i was then given steriods methatrexate but started losing my hair i am now on a drug called laflunimide and celcoxib(pain relief) which seems to help.
i have noticed over the past few months that my fingers are starting to curve and i am currently suffering with a bunion i can bearly walk when i have any footwear on. has any body else had same or similar problems is it something that will be operated on. i realy didnt expect i would be dealing with the diformaty this early on in my life
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Date: 12.01.2010
From: KayJay

Subject: Re: sero negative and diformaties help

Hi there. Sorry I don't know about your particular arthritis or meds you are on but I do have bunions. You are eligible to see the Podiatrist on the NHS [ ask your GP for details ]. Also ask the GP to refer you to an Orthopedic surgeon. They will be able to help you with the feet problems. Have you seen a Rhuematologist ? about your finger problem. I'm sorry to hear about your suffering at a young age but modern science should hopefully be trying to stop, or slow down , any possible deformities for you. Good Luck ;0)
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Date: 12.01.2010
From: Angela

Subject: Re: sero negative and diformaties help

Hiya Kylee, Its only a guess but maybe you have started to show damage because the right combination of meds was not found soon enough, they say it needs to be slowed down sooner rather than later, and most of the damage shows at the early stages. Hopefully the meds you are on now will be right and stop it in its tracks.It is so sad when you are so young to be troubled with this, I dont like it but I only got it when I was 51 so at least I had some life free of all this crap.
My diagnosis was sero negative arthritis but I call it RA as its the same thing but without the rhumatoid factor present.
I can't think of how to console you, only to say there are quite a few young ones on here that are in the same boat,so you dont have to feel alone.
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Date: 13.01.2010
From: kirsty

Subject: Re: sero negative and diformaties help

Hey Sorry to here you are suffering too at such a young age I am 24 and have had RA for 4yrs now and it still isnt under control. I have suffered from bent fingers but managed to see and occupational therapis on the NHS who has been great and made comfortable little splints to help restraighten my fingers - they are completly normal now when my arthritis isnt to bad and if it is bad they swell up and go bent again and i where the splints to stop them getting worse. The occupatinaltherapist i have seen has been great and helped me with loads of things like this and techniques for doing tasks I struggle with so speak to your doctor/rhematologist and ask them to refer you. Good luck
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Date: 14.01.2010
From: kylee

Subject: Re: sero negative and diformaties help

hi thank you all for your comments i will get on to it and hopefully get it seen to i am at the doctors tomorrow as the blister on my bunion is now infected and cant put any weight on my foot. i so glad to find others similar age with this diaese. as i have never spoken to any body my age struggling with tasks. i have an 18month daughter that keeps me going
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Date: 15.01.2010
From: Verity

Subject: Re: sero negative and diformaties help

Hi Kylee, unfortunately my hands are a bit screwed. My right hand more than my left. My last three fingers on my right hand are constantly curled under so I tend to point a lot lol. Also my left hand is going the same way. Its frustrating because Im just watching them get worse and there doesn't seem anything anyone can do. Ive had arthritis since 6 yrs old (am 24 now) so had approx 18 yrs of damage that wasn't treated as well as it could have been. just had to get used to it and hide my hands all the time.
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Date: 15.01.2010
From: kazza

Subject: Re: sero negative and diformaties help

just wondering how long you were on the sulphasalazine before they gave you the methotraxate??
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Date: 16.01.2010
From: kylee

Subject: Re: sero negative and diformaties help

hi i was on sulfa for about 9months i was also on hydrocloxacloraquin (please excuse spelling} but the two meds had no effect i told my specialist after 6months of being on them we decided to give it a few more months to see if it would make any differnece but it didnt. i was then but on to methatexate for 5months but had some badside affects my hair began to fall out and i always had headachs and very bad mood swings. i am now on laflunomide been on them for 3 and a half months had no sideaffects but also not had any result so far from the drug.
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Date: 27.01.2010
From: Lucy

Subject: Re: sero negative and diformaties help

Hi Kylee,

I'm 30 and have had RA since being 2. You need to find the right drugs to slow down the process before permanant damage is done. unfortunately I have damaged and deformed hands, elbows (my arms dont straighten) and knees. My hips are now slowly losing all mobilty. I did have around 10 years of inactive disease where although damaged joints were sore other joints were being left alone by the disease. It is now active again and I am yet again trying to find the right drugs to control the disease.

What I would say is dont be fobbed off by your consultant and let them know if drugs arnt working. Do research yourself re whats out there and try your best to stay positive.

I spent years hiding my hands but now I dont care what other people think....they are part of me so they either accept it or do one!!!

Hope you find some meds that work soon hun

Love

Lucy x
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Date: 29.01.2010
From: Verity

Subject: Re: sero negative and diformaties help

Hi Lucy my hands are bad and my elbows dont straighten either. Im just coming to terms with the deformities, still a way to go but Im much more accepting of myself now. It makes such a difference to your confidence levels.
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Date: 31.01.2010
From: Jill

Subject: Re: sero negative and diformaties help

guys altho I dont have curled fingers etc ..But have a huge joint on right thumb at base, and Trigger finger in all digits,I also wear a neck brace, and I cover that up with a scarf, so i feel i understand Y u cover up....I also hate to go out using a crutch, I c ppl all the time bliddy looking at me, especially if its hot and im wearing the neck brace, children stare all the time, dont mind that so much as the precious little creatures want to learn y im wearing it, im ok with that....However, I guess my point is, as time has gone on, (apart from the neck brace bit lol) if I limp, or im slower than a snail, i refuse to worry what ppl think! sod em.....mind u, u will be surprised just how mnay peeps are affected with arthritis in one way or another, so I think all in all, most people who see someones hand swollen or fingers curled, know that its artha!..I certainly did, if I saw a person, usually old at the time, when I was younger, I knew it was prob R.A...I guess it depends what type of person u come across, some are bliddy ignorant, and most I beleive are decent.....Ive got Stretch Marks from giving birth to 6 gorjus babies, luckily they arnt high up, lower down if ya know what i mean gals lolol...but i see them as beautiful, becos its part of me and part of a wonderful time in my life, i kn ow that is totally different from having a rotten disease like Artha, guess what im saying is be proud of who U r....having said that, I dont know what its like to have curved fingers that r damaged thru artha, so I guess im talking Poo ...lol...I sometimes walk like im a Constipated Duck....now that is embarrassing, cos it looks like ive just got off a horse, or ive been in the sack with my fella all day LOLOLOLOL.......unlikely story that is!!! pmsl....be proud ok!!!!!!! xxx
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Date: 31.01.2010
From: Verity

Subject: Re: sero negative and diformaties help

youre not talkin poo jill, everyone has their own insecurities. It helps to remember that sometimes, that youre not the only person in the world lol I often forget and feel sorry for myself and hide away but no matter what state youre in, i think confidence and acceptance are so important.
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Date: 01.02.2010
From: jill

Subject: Re: sero negative and diformaties help

HI verity, yea i agree with u there about confidence and acceptance, i feel different on diff days, bit like a bad hair day, confidence comes and goes.......ya know what Verity ?just other day, told my partner that im so sad for Him, since being so unwell, he has done everything, taken time off work to get kids to skool and back, putting my socks on, felt so ashamed, realised how blidddy disabled I am, hes done cleaning, cooking and looking after the kids as well as the dogs, and 4 cats, my kids r lazy, dont help much, so he did it all, I felt such a burden, lost confidence, felt ugly, began thinking " Y wld he want to be my carer, he wants a girlfriend not a blidddy burdurn of a criple(at times im bedridden), told him that I love him that much that Id rather he began a new life for himself, I did Not say it to get sympathy from him, beleive it or not, I hate all that, and I dont want his Pity, I cried, told him I love him, and that I dont want him being part of this anymore, unfair on him, only been with him 7 years, been sick for last 4,so feel rotten that he has to deal with all of this poo! I wld rather he at least be happy, rather than me drag him into this life.... its not always this bad, like its been, thats been due to circumstances, but for example, ive got to have a spine op yet, that is going to be terrible burden on all the family, and will take months to recover!...guess it all comes down to confidence there in my relationship, he does make me larf, and we both have a good sense of humour, however, I know it gets him down.....sorry for rambling tc x
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Date: 01.02.2010
From: Verity

Subject: Re: sero negative and diformaties help

Hi Jill, God I feel like that sometimes. I feel like shooing him on his way to a happier and more fulfilling life. Ive never mentioned I feel like this so dont know what his reaction would be. What did your oh say when you told him how you felt?
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Date: 02.02.2010
From: Jill

Subject: Re: sero negative and diformaties help

Verity he said.....where will I live? LOLOLOLO.....Joking! he said " u wld do same for me", I hope" ....he told me hes going nooooo where! he adores me thankgod, but I do struggle sometimes to sustain a good relationship, we manage, but often i feel selfish cos im soooo tired, or blidddy unwell.....each day can be different, drives me nuttttttttss.....but he does understand, I take him with me to all my appointments, and ive had 7 ops since 2003...so hes been thru it big time......he knows the score i guess, just itws me that feels rotten...wouldnt want him to stay either out of pity....never want that.....how long have u been with ya fella?
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