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Date: 14.04.2013
From: Eleanor

Subject: Really fed up

Hi

New to the forum. Hope you guys might have some words of advice for me!

Diagnosed with sero-negative RA about 10 years ago and I'm now 31. Recently lucky enough to get onto anti TNF injections and am on weekly enbrel,a after reacting badly to humira. I also take diclofenac, tramadol and co-codamol.

Despite this lovely cocktail, I seem to be having a real flare right now and nothing will touch the RA. Burning joints, lack of sleep, and total lethargy (combined with pressure at work) is making me really miserable.

I just feel like giving up on everything. Not that I will, but that's how hopeless it feels. GP not interested. Specialist has tried all avenues. And my partner, as great as he is, just can't seem to grasp quite how depressing the situation is for me and how hard it is to 'think positively'.

Does anyone have some advice for getting out of a very large rut please?

Thank you
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Date: 14.04.2013
From: Emm

Subject: Re: Really fed up

Hi Eleanor, A lot of people on here will identify with you on the way you are feeling. It is often hard to get medication that works, or you tick along for a good while 'not too bad' and out of the blue it all goes haywire and nothing seems to work.
I know that happens to me too.
It is hard to be positive too and it can be hard for people close to you to understand!
That is where this forum helps us.
To communicate with people in the same boat helps a lot.
I read some posts and think, hey thats the same as me or you recognise situations similar to your own.
I know it helps me a lot.
Sending you lots of love and just write all your moans on, it will make you feel better. Emm x
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Date: 14.04.2013
From: Bsk

Subject: Re: Really fed up

HI Eleanor,

I'm sero neg also and take Ebrel (half dose as have lung problems) and also pred. The latter not great but I can't manage without it. It's not really the GPs remit to to help with the RA so you need to go back to your specialist nurse (if you have one) or your consultant for a review. Mine will never leave me in the state you describe. Have they considered giving you a steroid shot to get you through this flare? That's what I would ask for.

You can ask your GP to refer you for a bit of psychological support - there are a number of things like expert patient program, cbt, etc. that might help you cope on a day to day level. The best thing I did was a Mindfulness course,meditation to most of us! Brilliant! It has helped me cope much better with the day to day stuff and also the blues. I would recommend it and think everyone should do it.

Also, don't forget that advances in treatments are being made all the time and trials going on. There is one happening at one London hospital at the moment that sounds promising. If you check out Arthritis Research UK website they have a whole section on research that is going on and where. I believe it is only a matter of time before there are more effective treatments. You are young so you will probably benefit more than me (I'm 20 years older than you!) So don't give up hope.
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Date: 14.04.2013
From: marlene

Subject: Re: Really fed up

Hi Eleanor, We all can relate with your highs and lows as we all suffer with this. The way you feel will pass it is good to hear you have a good partner.Eleanor unless you have arthritis in any form it isn't possible for anyone to totally understand. I bet you like all of us you put on this really brave face and say i'm ok when really you are far from it.This forum is great for having a moasn and a rant and no one ever judges you as we all understand.
I found this forum 2 years ago and for me it is a saviour. They are like best friends except we have never met. Take care sweetheart and you will come out the otherside xxxx
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Date: 14.04.2013
From: Colin W

Subject: Re: Really fed up

hi Eleanor , welcome to the forum

the depression goes with long term illness , you manage to keep working which helps a lot & would try to stay there , ask bsk said some do Mindfulness/Meditation & some take a mild anti-depressent Amitriptyline for thier GP

I would contact your rheumy nurse & mention your having problems , there is other Biologics they can try , I am starting golimumab (Simponi)this week after trying enbrel before , one thing you are not on any Disease-modifying anti-rheumatic drug (DMARD) like Methotrexate , most of us take more than one of these drugs along with the bio's , if you need your GP could give you a steriod injection to help short term but taking steriod tablets would try to aviod , taken myself months to get off them because allways have a big flare afterwards & if not going on a bio this week would end up back on them

hope you feel better soon
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Date: 14.04.2013
From: rhona

Subject: Re: Really fed up

Hi Eleanor,

Welcome to the forum. I am sorry that you are suffering with r/a especially at such a young age. I agree with the advice from the above posts and i too think you should contact your hospital and ask for a steroid jab to help you get over the flare. I would also try and get an appointment with your rheumatologist for a review on your treatment. As Colin says most of us do take DMARD's along with the biologics. I was on enbrel last year for 3 months and it didn't help me at all. I am now on rituximab and it has made a huge difference. It sometimes takes a while getting the right combination of drugs or the right biologic. Try and stay positive as things will get better but do let the hospital know that you are suffering just now and try and get as much rest as you.
Hope you will soon feel better x
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Date: 15.04.2013
From: Eleanor

Subject: Re: Really fed up

Thanks so much to everyone for your positive comments. Knowing I'm not alone has made me feel better already :-)

I'll pluck up the courage to talk to my nurse specialist tomorrow - she's nice, I just always feel like I am moaning! The meditation is a great idea too, so I'll see what the GP says, thank you.

In answer to some of your posts, I did take MTX and Sulfa in the past, but suffered with a very 'woolly' head with both, such that I found it hard to remember things. Plus neither seemed to do much for stopping the disease in my case, well...according to my specialist and my MRIs. I've also has steroid injections and pred tablets in the past and not found them very effective either...even during flares...is this unusual??!

By way of history, I have problems with fingers on both hands, left elbow, right wrist, left knee - operated on 18 months ago - and my right ankle, plus odd toes. And without wanting to sound like a walking medical disaster, I also have hypermobility. Is this also common among people with RA? Any insights really gratefully received.

Thanks again for the support x
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Date: 16.04.2013
From: Jo

Subject: Re: Really fed up

Hi Eleanor sorry to hear you are having such a bad time at the moment it happens to all of us and without warning that's the most frustrating one minute we are ok then the next we are not.I have recently been pensioned off work at the grand old age of 48 that has been really depressing for me at least you are still working which is good keep going for as long as you can. Do contact the nurse with any problems I always find them really helpful. I am on sulfa and humira and I do find the negative is the suppressing of the immune system but it does control the RA try to keep smiling they will get it right in the end we hope.Good luck x
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