Subject: New Medicine? Please help! +MY story, Teen on Prednisolon,Humira,Methotrexate

Hello.
I'm a fourtheen year old girl. But I'm not like most of my friends. They can run, but I can't. They don't need to worry on what time it is, or what day it is. They don't need that exstra rest I need. They don't need taking Thoose medecines, shots , tests and the long hospital visits.

But anyway I'm Still a kid. Like doing crazy things , and things I should not do. I like show people what I can do, that even beacuse I have arthritis I can do things. Many of my friends are overprotecting me. They are Afraid for hurting men and yeah really Many just don't know the thrut of 'arthritis'.Ê

But over to MY story ;Ê
As little it taked a while Before I began walk I wasen't even crawling i just wriggled forward but anyway I was really fast so maybe I just liked doing it. So I began taking my first steps, and I often was falling,limping,not wanted to use my fot/arm/wrist etc most it happend early on the morning or after special activeties. Going long was a problem, so until i was six/seven I used a stroller as I got older It just wasen't that often.. ÊI also had asthma and a really thuff time as little with that. But anyway I wasen't look sick so thing I think was a bit 'forgetten' .Ê

I remember Pain, I don't Now whats like to be without pain.. Starting at school maked me see I was different. And I remember much thing I wasen't able to do everyday. I remember people Asked me 'why? Why,I was running so weird?' 'why I was limping?' I remember the bad pain after walks, but most at all I remember I was afraid for telling people about it.Ê

Was at different doctor's but everyone just was saying "things is normal, Its gonna be fine" I was practis physio.. Into all it I got Psoriatic but everything still was alright. UNTIL

2009, One morning In the summer I Waked up and looked at my knee. I got chock, it was twice as big as the another One. It was painfull,stiff,red,immflammed. But I just thought It would go away told nothing to anyone. Days was going, but Now it was that big at still If I had an throuser you saw it that big knee. Many weeks Before I got Checked it.. Drained. Cortisoneinjected it. After that I've Done it some times..Ê

Now all In all 70joints are affected . And I've got the diagnosis Polyarticular juvenile arthritis w psoriatic. Been on mtx,humira,NSAIDs without hell and Yes I Tried the hightest dose and Yes I've tried diet. And no it dosent work. Maybe a bit on my psoriatic (think soo beacuse I don't have it) Humira since february , Mtx since 11 , NSAIDS since the diagnosis (not Now) and prednisolon some times..Ê

I'M In and really bad period now! Started prednisolon start of July 20mg (two weeks with lower of the dose ) but lowering just made everything worse. All that 70joints hurted small as big. And nearly all Them was very immflammed (hot,red,big,stiff, painfull..) again on prednisolon after One week stop of it 20mg two weeks Then 15 One week Then 10 (Now) Then 5 and ......

PLEASE GIVE ME TIPS ABOUT NEW MEDECINES OR THING LIKE THAT , OR JUST TELL ME OUR STORY . CAN'T WAIT ANYMORE. WANT BEE AND KID , THE PAIN JUST KILLS MEE.:( SOMEONE HAVE EXPERIENCE WITH OTHER BIOLOGIC MEDS THAN ENBREL AND REMICADE ? ROACTEMRA IS THAT GOOD? ORENCIA, KIOVIG ,AND JUST THANKS EVERYONE ANSWERS JUS ASK.. TO STIFF TO WRITE MORE NOW .

"I think Its like when you got and diagnosis you have very easy to think you have Done something wrong and you also see the symtoms from and earlyer stage much clearer"

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Subject: Re: New Medicine? Please help! +MY story, Teen on Prednisolon,Humira,Methotrexate

Hi Act, after reading your story I thought I would share my story with you.

I had just started Year Nine at school, I was on the hockey team and generally enjoying school, when I came down with what my GP thought was flu. I had the symptoms of flu fever, aching joints, tiredness etc and was told by the GP it was flu and to come back if I wasnât better in two weeks. After two visits and a blood test (I passed out after!) and still the same answer I was unable to get to the doctors surgery and two days after my 14th birthday they sent me into hospital. Very quickly I was diagnosed as having Juvenile Idiopathic Arthritis and I was very lucky with my consultant rheumatologist at the Royal Berkshire Hospital, Dr. David. After a couple of weeks on the childrenâs ward I was moved to Battle Hospital and put on the rheumatology ward (the next youngest person on the ward was 30). In total I was in hospital for 7 weeks. They put me on Diclofenac and a very high dose of Prednisolone, I went from being a size 10 to a 16/18 with a moon face; as you can imagine the change of my appearance coupled with finding out I had developed arthritis was devastating. Much like you I wanted to go back to being a normal kid and do all the things my friends were doing.

It was nearly Christmas by the time I managed to get back to school, I had to start by going back part time as I struggled to get up in the morning and my joints were always worse first thing. I was lucky at my school we had a very good special needs unit where I could go if my pain got too bad and I was allowed to go and sleep if I needed to (sleeping was my way of coping with the pain). Around Easter time I was back in hospital again for a couple of weeks and was given steroids by drip to try and control my arthritis.

Eventually I was put on Methotrexate, which was relatively new drug at that time, and I was given this by injection once a week by my GP and given very strong tablets to counteract the sickness. Unfortunately as it made me feel sick I started associating certain smells with my weekly injection and things like the smell of chips or bo (my doctor was particularly pungent some weeks and the smell made me sick twice!!). Eventually I was changed to tablet form, but I found looking at the bottle made me feel sick too. In 2000 I went back to Dr. David and they took me off the Methotrexate and put me on a new drug called Leflunomide, this worked well and I was finally able to start reducing the steroids. As I started university I was beginning to lose weight, helped also by a change in steroids from Prednisolone to a new steroid called Deflazacort.

While at university Dr. David got a new job at Nuffield Orthopaedic Hospital in Oxford and I was lucky enough to get referred to him there and could continue with him as my consultant. We continued to reduce my steroids and my arthritis continued to be controlled by the Leflunomide and Diclofenac. I was beginning to live a normal life, I graduated from university in 2004 and became a teacher. Part way through my first year of teaching I started to get pain in my right hip. I saw Dr. David and had a x-ray and MRI, nothing showed up. They decided to give me a steroid injection directly into my hip. After this the pain began to worsen, I went back for another x-ray (still nothing) and another MRI, this showed that I had damage to my hip called Avascular Necrosis. This basically means the bone in my hip was dying due to a lack of blood supply. The cause? Long term use of steroids. I was put on the waiting list to have my hip replaced. By this time I was working in my second year of teaching at a different school, but as the pain was so bad I was unable to continue to work. In 2006 I had my right hip replaced at the age of 25. After recovering from this operation I found my left hip had pain too and after another x-ray they decided to replace the left one too, this was done a year later.

In 2008 the Leflunomide stopped being as effective and I was started on Enbrel and this was the drug that literally changed my life. I was finally off the steroids completely and stopped taking the Diclofenac. I was now able to have a hospital appointment once a year instead of every three to six months and was able to start doing normal activities. I started doing Yoga and bought a bike (I hadnât ridden a bike since before I was diagnosed) and I even completed a 50 mile bike ride. I had a full time job teaching adults. In 2010 I went back to teaching children again, however after having a number of really bad colds, in December I began to flare again. My GP put me on a short course of Prednisolone to help with my symptoms, but when these stopped on Christmas eve my symptoms came straight back. On Boxing day I ended up at the walk in centre and they gave me some more. I managed to get an appointment with the Anti-TNF nurse between Christmas and new year and it was decided the Enbrel had stopped working. I am now on Humira and back to cross-training, cycling, teaching a demanding class of 4/5 year olds and decorating my new house.

Once your rheumatologist has sorted the right combination of drugs for you I am sure you will begin to live a much more normal life. I agree with Rhona that the reduction of your steroids is too fast. When I was reducing mine we put it down by 2.5mg at a time or by alternating doses each day. I would also say choose your friends carefully, keep those friends who are supportive. I had a group of friends at school that treated me quite badly and in the end I cut ties with them and chose some new friends who treated me the same as them and not differently, but that also understood when I couldnât do something.

I hope my story has helped you. Although it is a horrible condition I would not change the fact that I have RA. I think it has made me a better person and gives me empathy for others. Iâm now 30 and I have a lovely life and I wouldnât change any part of it.

Keep positive and use this forum to your benefit. Ruth.

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