1 year on...

So this time last year I was being diagnosed with Rheumatoid Arthritis....looking back I thought things were really bad and that I was really struggling....if only I'd known what this year had in stall for me, I wouldn't have complained!

It started off as pain and restricted movement in my wrist and at my worst (so far!) it has meant not being able to stand on my own let alone walk. I spent a very unhappy 3 weeks in a wheelchair 2 months ago with knees the size of melons and have never felt pain like it.

As many of you will be aware having RA brings a whole new meaning to the term 'trial and error'...I was started on steroids (Prednisolone), then hydroxychloroquine...then feeling my Rheumatologist wasn't really doing enough changed hospitals. Was immediately started on Methotrexate and had steroid injections in both knees and a wrist...this provided a huge amount of relief for a grand total of 4 days. I then had DEPO steroid injections (x4) but had to come of the Methotrexate due to abnormal liver function...however this got worse despite coming off it. Off for a ultrasound of the liver...which thankfully was all normal (yellow is not my colour!). Finally funding comes through for Biologics and started on Cimzia which my boyfriend injects for me...strange new relationship! (Note to anyone that gets help from family/partners...do not have an argument the morning you need to ask them to stick you with a needle..awkward haha). Then in for steroid infusions (x3) as couldn't bear to stand ...heart rate was through the roof...off for an ECG...thankfully all normal and actually as I explained at the time prob due to the fact that I was terrified and in a huge amount of pain. Back on the oral steroids.

So where does that leave us.....I'm currently waiting for funding (again) to start on Rituximab...back on a low dose methotrexate and steroids as the Cimzia doesn't appear to be working.

I've had 4months off work and hoping to go back after Christmas. I've had to adjust my life and ways of thinking an unbelievable amount since last year. Boyfriend is currently still here which I am thankful about...and also a little shocked, I'm not nice on 2hours sleep and painkillers!

Hears hoping 2013 will be the end to trial and error and they will eventually find what works for me. Also hoping the women in bloods who leaves a bruise every time finds a new career and leaves it to the people who know what they're doing with sharp objects like needles!

Hope everyone is having a pain free day

x

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Hello Tori, I do hope you get sorted soon and get a long term solution which puts ra into remission. I find it hard to come to terms with the limitations that ra forces upon us and i know that is half the battle to dealing with it. I agree lets hope that 2013 will be good to us and that the nurse is a little more gentle.

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Gosh hope you get sorted soon, woman in bloods?. assume you mean hopital phlebotomist?., why not see if Gp SURGERY nurse can do them? I have mine done there.. the bloods still go to the hospital for testing x Hope you get some results on that Cimza all our pesky drugs take a while to work x

[oldtimer]

I hate having my bloods done at the hospital too - the phlebotomists there all in one big room, talking to each other and barely giving the patient a glance. It worries me that they aren't taking enough attention and might take the blood into the wrong bottle or stick the wrong label on...and then they leave a large bruise so that everyone can see that I've had my blood taken again.

The phlebotomists at the surgery are lovely. They enquire how I'm doing, adjust things if I'm not comfortable, don't ask me to make a tight fist (they know I can't) and chat to me as if they have known me all their lives (they probably think they have, i see them so often). And strangely enough I don't have a bruise either.

So which do you think I prefer!

[Luan]

Hi hope it all goes well, it took me a year to get diagnosed and 2 years on they have finally decided to start me on the bio kinectics I can have weekly bi weekly or monthly...which do you recommend ?????? I have managed to keep working through it all and work has agreed I can get my injections delivered there thankfully. The weakness in all joints and the quickness it comes on is horrendous and the night sweats I can not remember the last time I had a good nights sleep can anyone recommend anything to help?????

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Thanks everyone. It's such an ongoing battle isn't it.

I've just changed GP's and my new one won't do bloods there as it's only small. Most of the phlebotomists at the hospital are good it's just one or two that I try and avoid! It's only an issue when you're having it done so regularly as I'm still on fortnightly bloods.

Luan...I'm on Cimzia currently which is a fortnightly injection but hopefully moving onto Rituximab which is an infusion. It's really individual...there's no evidence that any one works better than another it's just what you react best to. I'd also say it depends on whether you are willing to self inject, I do them myself but wouldn't want to be having to go in for them every week as obviously that interferes with work. From my point of view it's just persevering and waiting until they get you on something that works for you...and keeping faith that they will. Also some good painkillers while your waiting to get sorted really helped with sleep.

Hope everyone is doing well today and looking forward to Christmas.