Something Positive

rheumforafiddler

Hi,
I'm new in this forum but not new to arthritis. I'm 26 and started getting symptoms age 20. At the time I was studying dentistry at university and the disease started in my fingers so as you can imagine this was pretty scary thinking my career was over before it started. I thought I would share a little bit of my story as, some of the topics on here can be a bit daunting and depressing to those who are very newly diagnosed or perhaps have wandered here thinking that this is what they might have.

So I started getting pain in one finger....then another and so on until it spread to my wrists, feet, knees, elbows and hips. I went to the GP after about 4 months but in the back of my mind I knew this is what I had. After getting lectures on it at uni I just knew it. My GP was really good and referred me after 2 weeks. However, when I got to the rheumatologist he didn't think I had it at all. He was 6 months from retirement and in my mind wasn't that bothered about me. Over the next year things got worse. I was never bedbound but really struggled first thing in the morning to walk to the toilet and remember struggling to squeeze shampoo out of the bottle too! It's all the little things you notice. So after a year of being told to take ibuprofen and having feet that were ten times the size they used to be I finally got diagnosed. I was put on sulfasalazine and given steroid jags in the bum bum. That did nothing to be honest! The only relief I got was from the steroids. Luckily, my parents are both pharmacists and knew I should be on something stronger so I moved back home and got a new consultant who was great. By this time I was qualified and just about to start work. She did an ultrasound on my joints and did the inflammation test thingy which showed my joints up like they were on fire! I was relieved to get some recognition for how bad it was.
So she put me on methotrexate to start with. After about 6 months this still wasn't quite enough so she jumped through some hoops for me to start on etanercept. Due to my age and job I was lucky to get this as a dentist needs her hands! Etanercept was my miracle. Within 6 weeks I was able to come off the anti-inflammatories I had been on for years (by this time I was taking celecoxib constantly) and I started to feel normal again. Within a few months I was back doing everything I used to. After not being able to play my violin for longer than 5 mins at a time I was now able to join an orchestra and go to 2 hour rehearsals...sure the tendons were all a bit tight and it was sore to begin with but it was a completely different kind of pain...more like a big stretch.
That was almost 3 years ago now. I now only see my rheumatologist every 9 months for a check and there is no fire in my joints when they get scanned anymore! I take methotrexate injections once weekly, etanercept injections are now down to every 10 days and I take plaquenil tablets every day as well. I literally have a new body. I have zero pain, the only way i know i still have the disease is because I have to do the injections, which I hate but they are so worth it! I work full time pulling teeth out and everything with no problems.

So what I hoped to acheive by sharing my story is that, although it takes time and it's quite frankly a really **** time at the beginning...once you get the right cocktail of meds for you, you can lead a really normal life! I know I am one of the lucky ones and that unfortunately it takes longer for some people to get diagnosed and find the right treatment for them but I just wanted to give a little bit of hope for those people who might be going through a bit of a scary time just now.

P.s. My orchestra is raising money for arthritis care with a concert on November 3rd in Kirkcaldy if anyone wants to come!
Much love,
Angela

Soretoe2

Hi,thank you for sharing your story. You are obviously a strong person who is determined to get on with your life despite your RA.
I hope your good health continues for a long time and you are able to play in your orchestra and enjoy your work without any further complications.
I would have loved to come to the concert but as I live at the other end of the country it's not possible.
I hope that your story gives hope to many young people who face RA at such a young age and may feel that their futures are compromised by their illness.
Good luck on Nov 3rd, or should it be - break a leg ! Joy

Numptydumpty

Hi Rheumforafiddler,
welcome to the forum.
It is nice to read such a positive post. Yes, you are certainly one of the lucky ones. I'm pleased your meds are working for you, and hope they continue to do so.
All the best,
Numpty

elnafinn

Hi Angela

How refreshing! Thank you for telling us your story. I hope you will find the time to call in every so often and let us know how you are going on. I am sure the concert will be a success. A little far for me to travel though unfortunately. In fact I have never been to Scotland although we have talked about spending a few days there. Note to Elna, must make more effort.

I wish you all the best on the 3rd, Angela.

Elna x

dreamdaisy

Well done, I am pleased for you and I hope your story gives hope to those who are just starting out on their experience with arthritis. I maintain that if these drugs are given early enough then they can do what is written on the tin - you are proof of that and I wish you well. DD

bubbadog

Hi Welcome to Arthritis Care Forum, it's nice to hear a good news story now and again to know there is light at the end of the tunnel!

Loulou11

Congrats on getting under control, I'm absolutely gutted your so far away I need a good dentist ( I have the worst fear imaginable) and have a locked jaw so hate anyone going near my mouth lol. I'm so please your cocktail is working.

barbara12

Angela thankyou so much for going to the trouble of typing all that, it will be a great help to many on here.
I do wish you well with your future and I hope the concert is a great success xx

villier

Hi Angela
A big welcome, thank you for taking the time to tell your story, I do wish you well for the future and hope your concert goes well. As I stay near Glasgow not to many million miles away from Kirkcaldy you never know......tc...........Marie xx

frogmorton

Hi Angela

There is definitley room for a fiddler here espeialy one with such a lovely tale to tell

Thank you for sharing it with us.

Sadly I live in the Midlands otherwise you would have seen me there at your concert.

Love

Toni xxx

diamond

So nice to hear that you are doing well on meds,i hope this will continue for you.Best of luck with the forthcoming concert.x