Exceptionally Aggressive RA, resistant to treatment. Anyone?

merri

I understand that this might sound like Im moaning, as on the internet it's hard to convey tone. Nevertheless I'm actually just trying to be honest about my situation.

I've been on this journey following a car accident since the age of 27. I've tried a number of different DMARDs, Biological therapies and NSAIDS yet every time my body finds a way around the drug. My biological therapy nurse has confirmed that's what my body is doing and has said that my RA is the most aggressive she has seen in 20 years (if you're going to do it, you might as well do it right, seems to be my body's mantra )

I've tried the usuals, Methotrexate, Cimzia, Abatacept and now Toc yet nothing helps long term. I've developed:

- fibromyalgia
- endometriosis
- spondylosis
- Cushings
- connective tissue disease
- bursitis
and others along the way

I just wondered if anyone else has had a similar path really. Some days it just feels imposssible, though I try and get on as best I can. My pain ranges from severe to extremely severe, and although my aim has always been to return to work, with every drug I trial, the hope fades a bit more.

I also seem to see an awful lot of publications which seems to target those of us who have moderate/low disease activity, yet I'm having difficulty finding any resources to help with a situation such as mine. Does anyone have any advice for resources at all?

stickywicket

Hello stranger it's lovely to see you but, alas, for all the wrong reasons. I'm sorry I can't help. Meth and hydroxy serve me well. It must be horrible when nothing does. I don't suppose there are any rheumatologists who specialise in hard cases? Mind you, they'd be working with the same meds. I hope someone else has more to offer. Good luck!

merri

Hello chick, how are things? I'm glad that Meth&Hydro work well for you, it cheers me up when I hear that the meds are working for others Makes me think that somewhere there's the right combination out there for me

I'm lucky really as my biological therapy nurse hasn't given up on me...yet!

I just can't understand my body at all to be honest, it seems to enjoy making me suffer :roll: Maybe I'm secretly a masochist

Popsmith1874

Hello there I've had RA since 2014 and nothing's worked so far I've been on sulfazalasine,hydroxocoloquine and methotrexate which I'm still on and am waiting to go onto biologics, I've definitely got worse and last Friday got medically pensioned off from work, I also have oa now as well and have to get glasses now as my eyes have deteriorated since having this disease and I also use a walking stick most times , so we will see how the biologics go but I'm not holding my breadth

frogmorton

Hello merri - it's lovely to see your name

Sorry to hear you aren't great, but good to see you

Love

Toni xxx

merri

Popsmith1874 wrote:

Hello there I've had RA since 2014 and nothing's worked so far I've been on sulfazalasine,hydroxocoloquine and methotrexate which I'm still on and am waiting to go onto biologics, I've definitely got worse and last Friday got medically pensioned off from work, I also have oa now as well and have to get glasses now as my eyes have deteriorated since having this disease and I also use a walking stick most times , so we will see how the biologics go but I'm not holding my breadth

Hi Popsmith, I'm sorry to hear that your treatment so far hasn't been effective and that you have been medically pensioned off from work.

I don't know if this will help but just to reassure you, I was told my my biological therapy nurse that only 10% of people get to a second biological therapy plus DMARDs+NSAIDs without their disease showing either low disease activity or remission. Even fewer get to a third biologic like me and still have uncontrollable RA, with disease activity score far exceeding high levels, apparently I'm just special

In all honesty, while it's easy for me to say, I wouldn't worry. The likelihood that none of the biologics will work is slimmer than a slim thing on a diet Even I've not given up hope of one working for me

I think it'[s important that you and your RA team work together to work out how much of the pain and discomfort is RA, and how much is OA. Have you ever had steroid jabs to reduce the inflammation?

Popsmith1874

Hi yes I've had quite a lot they only tend to last a couple off weeks then it's back with a vengeance but I still try t be as active as I can, I go t swim aerobics 2 a week which help, plus get acupuncture every week from physio, plus I try t walk every day ,some days are worse than others but the way I see it is if you let it beat you then y have big problems also there are others that are a lot worse than me ,cheers

As5567

Have you tried something like Infliximab yet?

I went through years and years of drugs not working but Infliximab was the best drug I had ever been given, the main advantage of having infliximab is there is the option of being given higher doses where most biologics there isn't much scope for increasing the dose.

Never give up hope, there are plenty other drugs to try. Sadly for some people it just takes time to find the one that works for you.

trepolpen

hi , have they mentioned trying rituximab , it works well for a lot of RA sufferers , some of us seems to have a lot more aggressive RA after being on biologics , my CRP was over 200 & endded up in hospital a couple of years ago & put on high dose steriods , & still on high dose but the side effects from them can be very bad , ie diabetes & will affect how the Dmard drugs work

rituximad does seem to be helping & trying to get my steriods down to a mantainace level at some point , I was on Toc , made my CRP look very good but did little to help my joints & because of other health problems had to stop it ,