Hi all - had second from last physio session on the short wave device today and the physio will review my case after the last one next week. The physio technician looked at my hands after they had come out and asked me if I felt any improvement. I replied that it was just the same really - some days good and others rubbish and there seems no obvious reason for the good or bad days to be honest.
She looked at my fingers and asked me to clench them and I couldn't - never can anymore. She pointed at two that are very swollen and bruised looking permanently on the middle joints - the same ones that have been like this since September/ October - one on each hand and commented that they are quite pronounced to look at and wanted to know if they hurt me. They do a bit but only when I try and bend them or on bad days when one or other will get even more swollen and painful than usual. The other fingers are all tight and stiff and won't bend unless pushed but not a patch on the main two culprits.
So what I am wondering is at what stage the physio will give up and then what do I do? I am wondering if these middle finger joints can be replaced and what is the success rate with such operations does anyone know. Is this the next step or do I keep hoping the MTX will do the trick and have them back to normal again one day (by normal I mean how they were a year ago maybe?)? Or is it the knuckle joints that need replacing and then do the fingers work better again?
Sorry for all these questions but I've no one else to ask and the physio doesn't seem to know much really? TTx
I am sorry to hear you are having such a bad time.
My fingers were a bit like yours years ago. Swollen, blue and sort of felt bruised. And stuck. They are a lot better now, but I don't know why, except my meds have changed and been increased:
MTX, sulfasalazine, plaquenil, diclofenac these days.
I had a lot of help from OT with special hand "putty" and a splint to wear at night. And help from physio with a range of hand exercises to do. And as our hands are so vital I am obsessive about keeping them moving.
How long have you been on MTX? Perhaps it may take a while longer yet.
I don't know anything about surgery for fingers. This site is brilliant though, and someone out there will know.
All the best!
Well thanks but I'm not really having a bad time Phoebe - just the usual uncertainty and worry about what comes next that we all have with RA.
But having no rheumy nurse, no access to the rheumy and no one but my GP and physio to speak to from time to time about this I turn to this site and to those who know more about what to expect than anyone where I live. And that is reassuring to hear that your fingers are a lot better. My med is only MTX currently and I was taken down a few doses to 10mgs because of raised liver function but it's back to normal now so maybe I'll start going up again next week. The next dose will be the 9th altogether and I next see the rheumy in March.
I really don't want to start getting joints replaced of course - but nor do I want my fingers to be stuck like this forever more. I spend a lot of time exercising them too and I've been at the physio twice a week for a few different treatments since I started the MTX. My wrists are more flexible now but my fingers are just the same as they've been for ages. I do keep them moving so I know that it's not anything I can fully cure through exercise - I use a stress ball daily to work them out and they are getting better than they were but the improvement seems to have stopped short of getting them beyond 45 degrees ( a hook) if that makes sense? If that's actually quite good for someone with RA in their hands I'll shut up but I don't know anyone else to compare?
My ankles and one knee have now kicked off again slightly so I'm hobbling once more and that's made me think it's time to move up a dose of the MTX now that my liver is fine. Stupidly I told my GP that it was all a lot better in my hands because it was that day - then the next day bingo finger and knuckle flare are back on the agenda and I can't face seeing him again so soon.
But what I'm really asking here is whether it's normal to never be able to grip or clench fingers and have a finger on each hand permanently swollen even when everything else is quite good? If it's normal and won't get better than this then I'll change my expectations and get real. TTx
When they get your meds right the swelling should go down and hopefully all the movement will come back. It takes a while for the meds to kick in and to get the right combination. I'm hoping that the enbrel is going to work, apparently my CRP is down a bit from 107 to 82 so I'm taking that as a good sign although I don't feel any better yet. My rheumy nurse keeps telling me it'll take time, I think we just expect things to work immediately.
Mary
Oh okay Mary thanks. My CRP and ESR haven't been taken since October and they weren't that high - CRP was 19 and ESR was about 30 which was low compared to a year ago - how do you ask to have it taken I wonder? So maybe my disease activity is low or slow or just not that bad?
I'm not that up on it all really and don't get given much info from med people. I did ask the rheumy if I should be able to clench my fingers again one day and he nodded (a bit unconvincingly to be honest - because he just wanted me to take the MTX I think) and my GP said "that's what we are aiming for" in the same slightly unconvincing way. I just wonder how long the stiffness and swelling can go on for without my fingers being permanently damaged?
My ankle is hot and very sore when I walk on it with an angry red patch today and my knee is the same on the other leg but I don't worry about them so much because this will probably just go away tomorrow or the next day. So it's just really these finger joints that seem to be always stiff and unmoving and sore that worry me because it seems the longer they are like this the more unlikely they are to improve. That scares me terribly I admit because as Phoebe said "our hands are so vital" - and I'm an artist and my hands and eyes are my life and keep me sane. TTx
My hands are the same Tilda, especially the right hand, which is thick and swollen (fingers look like sausages with blue tinges around the knuckles!), and my ring finger keeps on triggering. Been like that for months and it makes it so difficult to take minutes and type at work! On Sulpha, Prednisolone only at mo, as had to come off MTX before Xmas, so maybe Mary is right and things will be better when meds are working properly? Going on Leflunomide soon, but trying an exclusion diet next week before my Rheumy apt, to see if that helps at all!! x
My crp is done as part of the routine blood tests and the nurse fills my book in with my results. At the moment I'm having to get my bloods done weekly. Your crp ideally should be less than 5, anything above that means there is inflammation.
I'm worried about permanent damage to my wrists hands and feet but last time they got my RA under control I was amazed how much movement I got back. When your hands are bad it's so disabling, I can't even wash my own hair!
Mary
I have weekly blood tests for the MTX but no one ever mentions the inflam markers and I don't think they are checked or I would know probably - they are just for liver and white blood cells.
So far I have only seen the rheumy twice and I think I see him again in March but they don't tell you until a week or two before the apt so I can't be sure yet. It would be interesting to know whether the inflammation was higher or lower than last time but I can't really tell my GP his job and we don't have rheumy nurses where I live or anyone with any specialist training in RA so I feel quite abandoned for much of the time.
That's why it's great having you lot to keep my on track with all the various tests and to help me understand what to expect a bit more.
Re hands yes it's so annoying isn't it? I can wash my hair again and brush my teeth because my wrists aren't so bad just now and fingers are mostly just stiff - they only hurt when I knock them on the swollen joints or try to do stuff with them - but opening the car doors/ boot or locking our front door using the knob is really sore on the knuckles still.
Actually now looking at my newly bright red swollen knees and ankle and having read your posts I have resolved to move up a dose of MTX on Tuesday and try and get up to 15mgs again in the hope that it starts working properly.
Hi Tilda, couldn't do anything a year ago, couldn't even close poppers, zips, cut up own food ect due to not being able to move fingers whatsoever, all I could do was scoop or use teeth.
Almost back to normal now, noticed last week I can even click fingers whislt dancing!
You'll get there soon as meds start working I'm sure
Yes, I'm with Wiliby, after anti-TNF my hands were a lot better. SOmetimes they ache a bit if I use them too much, but too much is a lot. A lot of typing, writing, drawing. I can undo tight tops on bottles and jars - if I can't other people with 'normal' joints find them hard.
So please don't give up. But keep pushing at the door for improved treatment. If it isn't working well enough, then you should be entitled to the next meds up.
I really h ope you feel better,
XX
I forgot to add that I have had steroid injections too, directly into my knuckles, sides of wrists, palm tendons, thumbs. And that helped enormously. But I had to wait about 8 months to get them done.
Thanks all positive news is gratefully received! I just tried clicking fingers Williby but it was pretty ouch. I'm still just at the beginning in terms of treatment of course but it feels like my hands and wrists have been like this for an age already. Despite a few bad days recently things have been worse for me too. I can turn the key in the ignition and lift pillows and duvet in the night and chop food as long as it's not too tough, without too much pain now mostly. But they could be a lot better too and it's just frustrating to find them still so feeble, stiff, swollen and sore constantly. So I will move up a dose on MTX this Tuesday and hope that the overall improvement continues to the point where they get back to normal - whatever normal is?! Should I check this with my GP first by phone do people think? He never tells me what to do next but then expresses surprise when I ask him so I never quite know re getting the next prescription or blood test.
I just never know how to begin to push and who to ask apart my GP who is away a lot and just seems to take instructions from rheumy now re my treatment. I guess I'll be reviewed again end of March when I see the rheumy next. Never been offered injections in my hands, although the physio did say that my GP is the only one who sometimes administers them - but he's never suggested this with me and he's seen my hands really lousy a few times and knows that that they are where the RA has settled.
I feel I can't just keep on pestering him all the time though really.- its awkward? TTx
When I have severe hand pain and loss of movement I use my paraffin hand bath, hot & cold contrast soaking in my double kitchen sink. Always begin and end in hot water. My worst time I had steroid shots. You do get so much flexibility back after flares. It has to do with NOT giving up and continued therapy. It can be YOUR therapy as described above. I've had RA for over 40 years began at 18. I swim in a warm therapy pool and use their hot tub 2 times a week. $20.00 a month through the hospital. Blessings!!!!!!!!
The RA in my wrists and hands seems to be constant rather than anything to do with flares for me and that's why I'm asking. It gets more painful and more swollen some days than others but my hands are now a bit disfigured looking (to my eyes at least) by swollen finger joints and swollen knuckles which never goes away as it does in all my other joints. I use a wax bath daily and it's nice but it doesn't do much apart from give my hands and brain a rest for 30 mins or so. I exercise them daily so they aren't claw hands but are never back to their old selves which is why I was asking - is this normal and just something to accept and move on - like rapid ageing?
Well done for surviving RA for over 40 years! Despite only having had it for a year now I can see that staying on top of things with exercise and therapy is going to be a permanent thing. No hydro pool here unfortunately but $20.00 per month sounds quite reasonable for all that? Here in the UK we are used to not paying for therapies, but the downside is that it means what you're offered is very limited. TTx
hi TildaT ,,, my hands were very bad my kids used to call me the claw (nice) but since being in sulpha and MTX i can now clench my left hand (sometimes have bad days) getting there with the right hand .... god isnt it so frustrating not even being able to open the milk ,, i used to get so frustrated with myself i used to stab to top of the milk with a knife (physco) lol
But it will get there gradually
debs xx
Yes it's so annoying I know. Mind you it might have helped my girth and conversation a bit last night because I was out for dinner and got served with a rich lemon pudding with a pastry base and I couldn't chop the pastry base so just scraped all the filling off and left it with an apology to the hostess that ended up with me reluctantly explaining it was due to RA. And then that led to a whole strand of conversation about a mutual friend of the other two women with RA and all the things she couldn't do with her hands too. Of course then there was the "have you tried cutting out the deadly nightshade foods yet?" thing.. never knew RA could be a party piece too?! TTx
Hi, it doesnt sound to me like you are being well managed. I have my crp done monthly and it is a good indication of how well your meds are working, ask them to do it with your next bloods, the consultant will need to know what its at when you see him next. The whole point of RA management is to get diagnosed and on the correct treatment asap as this can then prevent permanent joint damage. Dont worry about 'telling your gp his job' as you put it but do tell him as it is and be honest about your concerns- he has a duty if he doesnt know the answers himself to make sure you are seen by the man who does- but he will certainly know about reading your blood results and if your CRP is not going down , then your meds arnt working and question whether they should be adding another one in or increasing doses- not really sure what you are taking? You are still in the early days and its all so complicated, so keep asking and asking, take care, x
Oh I know you're right Cherry but it is hard. I had decided to just phone him tomorrow and ask if I can go up a dose with my MTX so if I'm feeling brave I'll also ask him how I know if meds are working if my inflammatory markers aren't being taken? I just end up feeling like I'm bothering them all nowadays when I call or go in. I think they just expect me to take the MTX and get on with it unless told otherwise re bloods. They don't expect patients to be better informed than them re RA protocol - although he knows I come on here because I told him.
And he's always so busy and booked up but if I go and see a different doctor then none of them want to undermine him because he's the senior GP. I don't want to undermine him either because he's the one who I went to first and one with the most up to date knowledge about RA and the one the rheumy works with most and writes to.
The trouble is that I don't like seeing people I don't know because it's such a specialist area and I end up starting from scratch and then wondering if I've been given the right dose or the right advice etc? I guess if I flare big time then I'll know it's not working and have something to show - but currently it's just the same or marginally worse or marginally better from day to day so I have nothing to show or tell them? TTx
From the way you describe it, I'm not sure you've ever been out of a flare as yet to get a level of control over your RA, and are still finding the dose of MTX that suits you. So it's still early days and especially important that you do talk to the GP. They're not telepathic, and he may well have forgotten what your normal hands look like so not realise how badly swollen they are. Do you have a MTX monitoring book? That lists the blood tests and has space to write in results. If you haven't it may well be that they are taking ESR & CRP but just haven't bothered to tell you the results. There are loads of people who go to the GP when they've just got a cold, so don't be shy and keep asking. Px
No I'm not sure either Polly? On one level I think I've got off light so far and on the other I think it's still a bit hellish not being able to fully clench my fingers ever or grip things properly and it takes me ages each morning to get them moving enough to put water in the kettle or open doors still.
But my GP is going to phone me tomorrow because I left a message for him to and I'm going to tell him about the cold flush thing that's affecting my toes and feet too now and say that I want to go up a dose to 12.5 and then I want to be better monitored to see if my inflammatory markers are changing. If I find they are going down I will feel more confident that the MTX is working I think. Hell's bells I know - imagine going to the doctor with a cold? I never went more than once a year at most before all this? And no I've not got an MTX monitoring book - I think my GP would have told me last week if they were taking the inflam markers and so would the practice nurse - she just says "Methotrexate and that's it?" each time. I mean I think it's all a bit better than it was but then I think I've just got used to my hands aching and hurting? Do our pain levels just adapt as this disease progresses I wonder? TTx
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Will my flexibility come back?
What would happen if I forced my finger down when it's stiff and sore and won't bend fully?
Not given meds - But worried about side effects
I have to make up my mind - will see how the day goes!
Why do only hands count - or is this just my hospital?
