Help

[dobsey]

Guys,

Diagnosed with RA in September 2013, it literally came on over night went to bed no pains healthy, woke up pains everywhere.

I was told within 12 months everything will be under control and you don't get crippled hands and feet like you used to.

Now my index and middle fingers are turning in and my toes as well , terrible pains in knees, ankles and shoulders

One joint on elbows very sore, cant put arms down on surfaces to rest, not main joint but underside one

Cant turn neck completely only 50% terrible headaches all the time now

Lower back pain sometimes cant even bend, but doctor says you cant get RA in lower back, nurses say pulled muscles or sciatica , but its not muscle or sciatica, gets really bad when i have a flare up.

When i exercise it relieves the pain, but then comes back after a few hours or so, it is excruciating at times, sometimes walk hunched up as can't straighten.

Need a stick to walk with ( cant get used to it) as have fallen six times now as knees seem to give way, also walking up stairs i sometimes i have to stop due to pain, coming down is so dodgy, have to be careful as knees give way so easy walking down the stairs.

Wrists all painful now and hard to carry stuff, wear supports

Gets my throat and my eyes, but they say it does not affect your eyes, but mine get very dry and sore and i struggle with vision, but then it goes back to normal , really strange.

my hips are sore on the outside of my thigh, they said that is not my hips but my back, if it was my hips they would hurt in the groin, is this true, as they are so sore on both sides where you feel the joint is.

Is this the norm, does it carry on getting worse.

No meds have worked so far

Just taken me off infusion of Tocilizumab and await new meds by infusion in July as had reaction

I dont think they know what they are doing but it is me who is suffering

I have seen there is a National Rhumatoid Arthriits hospital in Bath

Does anyone know how good it is there, is it worth me travelling to get treatment.

Any help would be appreciated as i am starting to feel that i am going to end up in a wheelchair, and i struggle big time with that

All they want to do is give me more and more pain killers.

Thanks, sorry to burden you

[Hidden]

I have heard very good things indeed about the Bath hospital. That's from people with psoriatic arthritis however, but I'd assume it's also very good for RA.

In my opinion treatment for inflammatory arthritis can be ..... a bit lacklustre shall we say. I have a good rheumatologist now though that was more due to luck than anything - I changed from previous rheumy who downplayed my disease to the extent that he could sit there looking at knees swollen up like footballs and declare he could see no swelling. I'm not even podgy. And the new rheumy at a different hospital is thorough and does the best for his patients.

It'll be interesting to see what others have to say about Bath & RA ..... if what you hear is encouraging I'd say go, go, go ..........

[Hidden in reply to Hidden]

My sister in law works in senior management in the NHS and lives in Bath - always trying to get me down from far north of Scotland telling me I would get proper treatment there. It sounds like you have a very aggressive form of RA. Mine is very slippery and my rheumy doesn't seem to have a clue how to treat it. He won't even let me try biologics despite the fact that I've tried four DMARDs over four years and inflammation is clearly running riot around my body. He is always just waiting for visibly swollen joints to make his job easy despite the fact that I'm much more ill with it now than I ever was when my joints were visibly swollen.

Hope you can find a treatment you can tolerate which works like magic for you. Tx

[dobsey in reply to Hidden]

Hi

your guy sounds like mine, always looking for swollen joints but i have very few but loads of pain

the thing that stumps them is very few swollen joints in my hands but index and middle fingers on both hands are curling in badly

One guy says mine presents itself differently than others, so maybe you should bring this up with them, that yours presents itself differently, what ever that means ha ha

i don't think they know sorry you have problems as well

[dobsey in reply to Hidden]

thanks postie

as you say its the luck of the draw, so i think i might need another draw at it ha ha

Bath is looking good to go me thinks.

[Cfor]

Hi Dobsey, I know how you feel, without meds I would not be active at all. I'm on Methotrexate and one prednisone a day. I found that only taking it for flares but it would flare a soon as I came off. I'm not great but able to function day by day. Tried other meds but they didn't agree with me. I know they say prednisone is bad for you but so are the other drugs. Get a good specialist. Good Luck, I know its no fun and yes it can go into your eyes and can blind you.

[dobsey in reply to Cfor]

Thanks, thats interesting about going blind, need to look that up !

[jlmack]

Hi there. I am so sorry to hear you are suffering so much. It does sound that your RA is running riot, I really feel for you. You don't say whether you are sero-positive, I presume you are although I could be wrong! My Mum had very severe RA, she was diagnosed in 1977 so before all these drugs we have now. Mum was a very brave and strong lady and trailed all the drugs we have now. My Mum frequently went to Bath and had infusions and all kinds of stuff. I don't remember the medications she had because I didn't pay much attention to be honest, wish now I had seeing I have RA too, but Bath really is wonderful. We used to take Mum in her wheelchair around the shops too. I missed her terribly when she was there but always knew she came away feeling a little better. I believe she had transfusions there and they treated the whole of her, if that's makes sense. My Mum was only wheelchair bound for the last 2 years of her life and prior to that she used sticks (she as very stubborn!) and a chair to enable her to go places. Mum kept positive that something would work...the RA Mum had was very destructive and I won't go into the operations she had or her health but My Mum kept her spirit, she had a wicked sense of humour, and the Rheumy nurses, and some NRAS ladies, now helping me remember Mum with much fondness and for hr strength. Please don't feel it's helpless and please don't let it consume you. When I'm having a bad flare up and can't get out of bed with fatigue and pain, I try to think about my Mum and her humour and it makes me smile. If you would like to PM me you can but I would also say to utilise your friends and support network and the people on here.

2 other things, have you rung NRAS advice line? They are so amazing and may be able to help with ideas and also, could you ask for a second opinion?

Massive gentle and virtual hugs.

[dobsey in reply to jlmack]

Hi jlmack

thanks very much, sorry about your mum brave woman

The top guy there was seeing me privately but moved me to NHS as i had to go on biologics, very expensive, so they keep reminding me.

I am starting to wonder now, that , if he is top guy, what are the others like. ha ha

Not one of my friends has RA or a clue about it, they all tell me they have arthritis as well in different areas, so i don't discuss it with them.

Bath is looking like a good place.

[jlmack in reply to dobsey]

Have you got an NRAS group near you? They can be of enormous support.

[oldtimer]

Don't give up - press for good treatment. i know it's trial and error at present but there WILL be a treatment that helps you.

As far as I can see you only get good treatment if you go on persisting and calmly telling them that what you have so far is not good enough.

Try to avoid becoming too emotional about it - but I did once find that breaking down in tears after always being stalwart gave them a jolt into more active treatment! But I have noticed that if people are always dramatic (there are usually one or two in the waiting room!) they seem to get short shrift, so presenting the facts that you have recorded (keep a diary) seems to work better.

[dobsey in reply to oldtimer]

Thanks

got my meet on wednesday, going to ask them if they can handle my RA as a lot of patients there seem to just have it on their hands and feet.

so maybe mine is too aggressive for them, i think they will kick me out as i have no in confidence for them and am thinking about telling them that .

[Hidden in reply to dobsey]

I wouldn't recommend being too forthright. The risk is that you get a reputation for being a difficult patient. I don't know how great this risk is, but doctors talk to each other. In an ideal world we could tell it like it is, but they don't have time to get the measure of us & decide for themselves what sort of person we are.

I did not know what to say when my new rheumy asked me why I'd changed ..... it seemed to me that starting off by dissing the last one wasn't a good idea. So I mumbled and blustered & showed him me knees - that did it!

You have definite symptoms, with the right doctor they will suffice to get you on track.

I think oldtimer's advice is spot on: be clear (about symptoms anyway and, very importantly about how they affect your ability to do things), calm, cooperative, reasonable and emotional only if you can't hold back the tears.

[Barrister]

With your back problems it sounds as though you might have spondyloarthritis with/without RA. Maybe you should ask regarding this. Also, RA does affect your eyes. Ask to be tested for Sjorgrens Syndrome as this is another auto immune disorder wiphich causes dry/sore eyes and dry mouth. Good luck with getting sorted out. I suffered with back pain for over twenty years, having surgery which caused terrible problems. Also had feet, ankle, wrist, neck pain and was finally diagnosed about 2 years ago. Now on Humira which has made a big difference and most of the time I'm pretty good. Clemmie

[dobsey in reply to Barrister]

Hi Thanks Clemmie

Humira did not work for me after three months so they took me off it and put me on to infusions

I think they did not give it time and wanted me in their research dept as they were starting trials on pure biologics

Watch Humira it can give you bad depression Just saying

[Karen77]

Not sure if this helps at all, but I had a finger that got really bad, so much so that it stuck out like a triangle if I tried to put my palms together as in prayer. Over the past couple of years after getting things under control with drugs (even with a year-long flare in between), it's almost completely straightened out again! It doesn't have it's original flexibility, but there's no pain whatsoever and functions as well as any other finger. So even though your body is clearly in a raging forest fire right now, have hope that some miracle drug will present itself and douse the flames and that two things will happen - one, the deterioration/damage will stop; and two, it may even get better. I know that life is dark and miserable right now, but grab onto whatever sliver of hope you can.

[dobsey in reply to Karen77]

Thanks karen

just see the old people crippled with this and i do not want that for me

I just need to know from them where this is going

I don't think they know really, one doctor who was researching damage to ankles told me they don't know and its all trial and error.

Thanks for what you said though, a chance my fingers will go back straight.

[Karen77 in reply to dobsey]

It seems like we're all guinea pigs, which is perhaps the scariest thing! I see those "little old lobster claw ladies" as I call them, and find myself freaking out that I am looking at a mirror into the future. But then I remind myself that I just have to enjoy what mobility I have today. I also remind myself that they are somehow managing and if they can be strong and carry on, I can too. *Gentle hugs to you*

[Kathyk]

I am so sorry to hear how poorly you are and how ineffective the treatment seems to be so far.

Please do keep going back to your medical team and try to keep a clear list of symptoms which you can insist on going through. I too have lower back pain and my rheumy says it is due to inflammation of the sacroiliac joints, so there are definitely some circumstances in which RA can affect the back. Whatever the cause, you are in pain and should be treated with expertise and understanding.

I wish you all the best, and hope to hear you posting with a more positive outcome soon.

[dobsey in reply to Kathyk]

Wow thanks for this as i am going Wednesday and will do my list

Dam long one ha ha

Got to sort this back thing out , that was good information , thanks

Just have no confidence in them

[Lynnofthewood]

Check out the Paddison Programme on line. Good luck x