Ulnar Drift - how to prevent? plus MTX side effects?

Tilda this must really be distressing, given your work - but for other aesthetic reasons too. I don't have this (yet) but am aware of strange stretching feelings in my hands sometimes which could be related. Having seen this ulnar drift in my mother, I try to sleep with my hands flat and together under my pillow. I have two pillows with hand in the middle. it seems to keep them contained and reasonably comfortable.

If this happened suddenly might it go away suddenly too , or will it necessitate intervention? I have heard of RA burning itself out, but what matters is what is left afterwards. I think that its worth keeping a diary of symptoms and seeing whether there's any correlation between moments of stress and times of high disease activity.

I can't help with MTX either really, but I'm very happy to hear that the hands aren't hurting - that must reduce the tendency to the drift? I have itchy scalp, but I'm an itchy sort of person so I'm not sure if that's attributable to MTX.

Hope you can take things steadily - are there any signs of spring where you are? We have crocuses coming up on the Meadows and even some wee snowdrops in our small garden. Its helping to distract me from the rather raw pain in my knee. Will have to get that done some day I suppose.

XX

No experience of ulnar drift, as wonky toes are my thing. But re skin, could it just be february and middle of tough winter and being a bit stretched? I think you do take Vit D, but also Vit E &A? Px (oh & like the idea of an arthritis glove in your other post - I want a total body one that I could be zipped into and then just lie in cosy comfort like a big grey maggot)

I also have same problems with hands my consultant gave me splints which do help while they are on but returns when off so i do tend to where them when doing house work etc i also sleep with hands under pillow i have purchased thermal support gloves from chemist which i wear at night when hands are soore and they do help xxx

i'm waiting for a call from OT at the hospital so I can have castes made for nighttime splints and my physio is going to research daytime ones to hold my fingers in. My question was really the same as Cathie's ie has anyone had their ulnar dift actually corrected by medication, splinting or exercise?

Re Spring - it came but now the wild west wind is hammering the poor old snowdrops and crocus's - it's much colder today but still relatively mild compared to South the builder tells us. Apparently it was minus 30 when he went back to Poland last week! Here it's about 8 degrees but colder with the wind chill. I'm keeping my fingerless arthritis gloves on for now - they are a make called IMAK and I'm going to order another pair - definitely my best supports to date. The physio was dead impressed by them - they make my fingers spring back into place so I feel less weird when I wear them now! TTx

Hi, the best help I got for ulnar drift was from the OT.

I got a set of hand strengthening exercises to do, a resting night splint (which she moulded for me out of some heat treated mesh material) and a day splint to wear when doing physical stuff like ironing and hoovering, etc.

And also I was taught how to use my hands in the opposite way to normal... like turning taps or knobs with the "wrong" hand so I only turn things inwards. If you see what I mean. I even hold a pen differently now.

I seem to remember you work with your hands? So perhaps you can develop some techniques to hold things in a different way?

I hope you can get some expert help. Good luck.

Phoebe, That seems a great idea, about turning knobs! All the knobs in my Senior Condominium have been replaced with up/down levers. Love them. But if I am somewhere and there are knobs, I will keep that in mind

Tida, I do love the way your arthritis gloves seem to work for you. I ahve seen them advertised.

In answer to the question aboput preventing or correcting ulnar drift, I will write a seperate answer. Loret xx

Thanks people - I have just returned after getting my hair done (incrementally as Sylvi suggested so it hardly notices!) and read all your replies. The way my fingers are drifting doesn't look like the pictures of ulnar drift yet but rather my pinkies are both sticking out and won't lie next to my other fingers plus forefingers are also aiming away from the other two. Its nothing you'd notice unless you looked but if physio and hubby and a couple of close friends can see it clearly then I guess it's real enough. So far the way my RA has worked is that it leaves me alone apart from stiffness and twinging mainly in hands and wrists - and then it comes on in a great big violent flare and that's when the damage occurs. I get the odd day when it's in a knee or an ankle still but really hardly ever to date.

My physio has given me exercises too and they have helped my range of motion enormously although I'm still can't achieve a clench with either hand and they are weaker than they used to be.

My hands are generally much better than they were in terms of pain - I can draw and write again no problem whereas before Xmas I couldnt hold a pen or pencil and write because the pain was so intense in my knuckles. So I think I'll have to say that the MTX and exercises I give my hands daily are paying off now. But the flares I have had a quite scary and brutal so I really hope that I don't get anymore. They remind me of the couple of times I've had an abscess under a tooth and the pain has been appalling and apparently if you look at the skull of a person who has had abscesses they penetrate deep into the jaw bone and I feel my flares to date are a bit like this. But it's interesting to read on Sylvi's blog that the red spots are common for people on MTX and I don't think it's just seasonal because the weather here has been the same all winter ie windy, wet and cold but my skin only started getting really dodgy after the flare and simultaneously to the pain getting much less bad so I'm reckoning that the MTX must be working and giving me side effects at the same time?!

I'm very glad the problems haven't reached my feet because I can imagine how hard that would be but hands are fairly crucial to me as an artist too. I guess all our joints are pretty useful really and we only appreciate them fully when they are not working so well. TTx

hi Tilda, My Occupational nurse suggested I try resting my hands over a ball of socks, I do find it helps at night, something to do with it being the best position for blood to flow freely and also prevents carpel tunnel.... then I got some resting splints which keeps hands wrists in same position.

One of my fingers started to drift of before RA was controlled but seems to be back where it should be, not sure if it was drifting or was the swelling causing the gap..

does your doctor think your MTX is working? when is your next consultant appointment? nosey today aren't I

xx

Oh yes and I'm so nosey too so I love it when others are with me! Well I think i see rheumy again end of March but not sure since they don't send out apt cards until about 10 days before hand. I just find my RA situ very confusing really. I think up here GPs tend to rate their own levels of expertise quite highly for some reason? I was talking with hubby about this tonight at dinner actually.

He grew up in East Africa where he contracted a tropical disease from swimming in fresh water lakes. He must have had it since being a kid and our GP made the connection about ten years ago and he was sent some 3rd world drug that said "to be taken as an inpatient only" on it and told to just take it in a single dose and that should be that. He was home alone when he took it and came out in huge purple welts and panicked, phoned our surgery where a different GP (ours was away) had never heard of this drug - went away and looked at notes and came back sounding a bit panic stricken and said "ah well I'm sure they will go away soon" and that was that?! He's had loads of problems with bladder and prostate ever since but they just shrug and say he's reached a certain age blah blah. He pushed them to give him a cistoscopy this time a year ago and they just said ho hum it's you're prostate that's enlarged mate here's the drugs you're on them now for life like many others - end of? Now I'm sure elsewhere he'd have been sent to a specialist in tropical medicine - and I'm now wondering why everyone else with a thyroid problem seems to have an endocronologist where I'm just given the meds and that's that?!

But maybe I'm just turning into a winge-bag "I just don't beleeeve it" type - sorry to ramble on. Just had my MTX - 12th dose to date - and yes I think perhaps it is working but then you know how it is with me.. this disease is variable for many but for me it seems to clean disappear and then I get all excited and lo it takes me by storm. But I think you're maybe going to be may large ray of hope re fingers resuming their former positions when the medication is at the right level for me perhaps.

How's work going now - any better? TTx

Some gp's better than others for sure! not good when they just fob us of without any investigation. Will be interesting to see what your Consultant says, my RA appears to be quite consistent unlike yours so that makes me wonder if it is under control with MTX? I suppose a DAS score would help to gauge whats going on...

My work have gone from bad to worse, rang in sick yesterday but spent the day feeling bad about it!! I have until Friday (when I'm in again) to decide what to do....unknown to them my sister has a Management Training and HR Consultancy but only went to her yesterday and told her all that has been going on, wish I did it earlier but didn't want to bother her as she's very busy (and stupid pride ), anyway, she's horrified at what they've been doing and will help me through the next step of putting in a formal grievance.

hope your having a better day xx

Hey that's great about your sister - yes perhaps you shouldn't have let pride stood in way for this long but family dynamics are always complicated with sisters I know. Glad she's on board now though sure she'll empower you to make that grievance and wham it home to them for once and for all.

I never got a DAS score to begin with? - didn't like to ask my rheumy as he's got a queue as long as the hospital when he's up here. He did just say sero neg RA and to keep an open mind about it changing. Think if things are as they are now then he'll probably just leave me on the MTX at 15mgs but my GP says if I flare again then he will write and forewarn him that the disease appears not to be under control yet.

Personally I think mine is mild RA until flares and then it's very aggressive but doesn't last long. Well that's been the pattern so far but others don't seem to have it like this so maybe it's just mild full stop? Or perhaps it'll burn out as I have a negative anti-CCP and I read that this makes spontaneous remission more likely. I want it to go away so much I keep thinking if I will it to with enough force! And perhaps it will just disappear but hands and ankles are into low ache/ throb mode now and so I can't quite hazard total optimism yet and I've been here before anyway and each time its more disappointing when the pain returns. When you say yours appears to be quite consistent do you mean in your new drug induced remission or do you mean you are still in constant pain but it's just not nearly as bad compared to how it was to begin with? TTx

morning tilda,

I meant consistent by when I was in flare, it was every joint every day for 2 months until I got steroid injection, then it was still crappy but better, again felt the same every day for months, no having the flitting pains that you seem to have and not the extreme pain you describe either, just constant throbbing ache and stiffness; until I started Enbrel

There was a DAS calculator posted here once where you can easily work it out for yourself once you have your crp blood results (which you have now) I found it helpful once starting Enbrel as I was able to track progress.

Hope you having a good day, I'm so nervous as I sent a huge e-mail to HR yesterday outlining my complaints and waiting for a reply now...yikes

xx

Oh gosh I hope the reply comes back swiftly for your sake - well done though! I have just emailed someone about a job for an artist working with kids and Historic Scotland - 2 days a week and quite well paid for about 3 months I think. I sent it off quickly before I had time to backtrack or let OH put me off and have now realised emails aren't sending from my laptop just now so have to try and get to bottom of that and work out if she will have received it from me or not too!

I don't know whether ESR or CRP counts most for DAS but my ESR was 40 and my CRP only 12 or so which is the lowest yet for CRP and going up a bit for ESR. Can't work out what this means at all really but my GP said she would use the ESR for patients with RA more? I find that my knees, shoulders and ankles quite often ache a bit and my feet are sore under the toe pads quite often but not what I'd describe as pain - just a slight ache and if I lift anything my shoulders feel it. This nothing compared to when my wrists and fingers/ knuckles kick off however although it has been disabling last year off and on. I wouldn't know how to count joints affected really as to me it seems pretty low level pain most of the time now with the occasional erruption in my wrists and fingers but nothing since the last one. No one else on here seems to have RA quite like mine so maybe I'm a bit weird? Or probably they just get on with life and don't worry as much as I do!

I've just had another afternoon nap without meaning to - right in the middle of working - just dropped clean off. Not sure what this means either?! Maybe just that I'm feeling my age. Hands okay tody but like you've described they've taken to throbbing on and off rather than all out pain. Just aware of it enough to prevent me having total fantasies about it having at last gone away! TTx

Hi Tilda,

I did notice about 3 years ago the start of this, so scary your fingers and hand going side ways. Mine stopped moving when I started Humira, and my hands look fine now. My ankles and feet were the worst. Recently, while having wrist kenalogged (new word) the radiologist said my hands were not too bad, which with RA is good news. Its not irreversable, mine were defo going crooked, I remember looking at my index fingers & knuckles were veritably deformed! and feeling very frightened, hopefully yours will stop. I never had splints or OT, so maybe mine was'nt as advanced.

Thanks God for biologics.

Good Luck, Gina.

No Gina I really don't think mine is that advanced either, but i feel as though I'm trapped on a rollercoaster. Sure we all do really a lot of the time with RA.

I've got to the very weird stage where I almost feel relieved when I'm in pain because I find the uncertainty of whether it's gone away, burnt out or whatever so relentlessly tantalising every time I go into remission? I know I should live for the moment and enjoy the good days and maybe when I get used to the idea that it can come and go in this way I will really start to just take each day at a time, but just now I'm finding it all really hard because I feel I should try and be psychologically prepared for another rapid onset attack even though they haven't been very frequent before so no reason for this really.

I think one of the worst things for me was googling RA and now googling ulnar drift and seeing these awful images of what how my hands might look. It is the most used image for RA after all. And usually it's an image of very old hands which I should find comforting because these photos were probably taken of people who had suffered from this disease for many years without the DMARDs and Biologics of now - well that's what I try to console myself with anyhow!

But that is really cheering for me Gina - same as Williby's tale - because it is only the slight windblown look now and I keep telling myself that if I exercise my hands a lot and increase the dose of MTX to max I'm allowed for now i.e 15mgs next week - then there's a good chance that my hands will drift back to where they were a year ago. And maybe now I've got the Naproxen and the Tramadol and soon the splints these will stop me having such a brutal flare as the one Saturday week ago. I'm really grateful to you all, who regularly endure much worse than me - for coming to my rescue once again. It's been a funny few days really - maybe it's all lunar or something? TTx

Hi Tilda,

Didn't mean to scare you about the ulnar drift! My rheumy nurse says it will correct itself when the swelling goes down although she thinks I will almost certainly have some permanent damage but hopefuly yours has been caught earlier.

I'm glad the mtx seems to be working. I thimk the enbrel is starting to work for me but it's slow progress.

Mary

Yes I know it is slow progress Mary - and don't worry I got more out of looking at ulnar drift because of you than I was alarmed. I'm pretty pragmatic really but it just brought back my initial horror when I first googled RA that's all - and made it a bit more real. Through looking at ulnar drift images I found out more about it and also saw a link to specialist splints to prevent the drift that I've sent to my physio (at her request) and my OT too so it's pushed me to push them into action which can only be a good thing really. Fingers crossed for the you with the Enbrel and me with the MTX and everyone else on here too with the various drugs we are on. TTx

I too have been worried about this. In addition to all the useful posts here, it's really important to protect your joints - read this very helpful blog from RA Warrior. rawarrior.com/rheumatoid-ar...

If you don't already follow RA Warrior, I certainly recommend it. It can be a bit scary, but she is a tireless researcher on behalf of us 'sufferers' and answers so many questions.

I hope that the MTX continues to work for you (I would cross my fingers but...)

Fi

Ha yes well I actually tried to cross my fingers for someone else earlier today and find I can now do it with my left fingers but still not quite with my right. Still that is progress and I'll credit the MTX. I tell myself often that they wouldn't put us on such a toxic drug if there wasn't a strong chance that it might work so I think I'm getting there, but that's always a scary thing to say with RA isn't it so touching the proverbial wood at same time (much easier than crossing fingers).

Yes I did read that RA Warrior blog a fair while back and started taking better care of my fingers but I find I grow lax easily and then I try and do something such as squeeze a dishcloth or pull a tight fitting book out of the bookshelf and am reminded of her blog instantly. I was also given a sheet about looking after your hands by the OT but it wasn't quite as memorable as RA Warrior usually is!

How are you anyway Fi?

Hi, I have been on Mtx. for years (tablets) and found that when they increased my dose I started to suffer with boils which stopped as soon as the Mtx. was reduced to a lower dose. (The boils were in a spiteful place when I sat down !!!!)

My skin on my torso is exceptionally dry. I have spoken to my rheumy and GP about it and neither gave me an answer as to whether the cause is Mtx. or any of the other drugs I'm on or just a normal part of aging. So basically told to just keep using the creams!

Hope you/they can sort out your side effects if you are finding Mtx. works for you.

That sounds really nasty Judi - mine are just little red pimples on my face and I bought a tea tree and witchhazel stick with cover up so hopefully that will make them clear off or at least hide them. I have quite a hairy chin which I have to pluck often - they are blond hairs so not too noticeable but I can feel them all the time but wondered if removing them is causing these red spots perhaps but it never has before! Sorry that's yiuck to mention really but then so are boils on bums - but always worth finding out if others here have same thing as it helps work out cause. I do think MTX is drying me out a bit in general as I'm itchier than I was - my scalp especially. TTx

Hi Tilda

I've just seen my rheumy nurse. I have a strange rash on my legs, I was paranoid it was yet another drug allergy but she got the consultant to look at it and it's a skin infection. Apparently cos of the immune suppressants we are much more prone to them. Maybe you should ask your GP if yours is too. I was told to use hydrocortisone cream.

With the DAS score, this should only really be done by the drs or nurses as we can't really assess swelling etc ourselves.

How are your wrists? Mine are still really bad and my nurse said if my hands and feet aren't any better next week she wants me to have steroid injections in the joints.

Mary

Hi Mary thanks for asking. I feel terribly guilty to admit this but my wrists are great just now - the best they've been in 6 months really. I haven't got full range of motion back with my right wrist and my fingers and knuckles still ache on and off and are still a bit stiff and swollen but not so it stops me getting stuff done. My skin isn't that bad - after a lifetime of eczema I really don't fret too much about pimples on my face - I always had a rash around my mouth and horribly dry lips for most of my life and it's been gone for a few years now so I do really look relatively presentable even with the red pimples.

Since that last big flare in wrists and hands 2 weeks ago I really haven't had the soreness or pain in my ulnar joints that was almost constantly with me before. I don't know if the MTX is working brilliantly after 12 weeks or whether the RA has gone into spontaneous remmission out after a whole year or whether it will come wooshing back one day soon when I'm least expecting it - as has happened before. I just know I'm really lucky and am working on being less of a worrier and just enjoying it while it lasts! I am constantly exhausted and a bit low but think that's just because I'm lacking in Vit D or thyroxine needs adjusting or something.

I really, really hope the same thing happens to you re pain subsiding very soon or at least that those steroid injections make a big difference to you.

Tilda x

Hi Tilda, In resonse to your origianl question about preventing ulnar drift:

As you know, I saw the remarkable Orthopaedic Hand Specialist a few days ago, in Cleveland. The xrays, he went over with me, bit by bit, looked very much like the ones on the Google site, except my ulnar bone was dropped quite aways away from where it was supposed to be. I asked what makes it do that. The answer is, RA destroys the cartilage that holds all those bones in place and cushions them, so they work smoothily. Once the cartilage is as destroyed and totally absent as mine is, the ulnar has nothing to hold it there.

Over all the years that Hand Physio, or other orthopaedics, or Rheumatologists, have looked at my hands, no one ever mentioned there was any way to prevent or change ulnar drift. Once again, once the "glue" is gone, destroyed by the inflammation of RA, there is no revefsal.

The splints help because they keep your range of motion in your hands and wrists restricted, so you can't move them to the place where it would hurt more.

Also, the arthritis gloves, will keep your hands warmer, holding the warmth so it comforts the joints. Sounds good to me.

I love the idea of the total cocoon!! Somebody: Jump on that idea and patent it immediately!!

Do you folks ever see that TV program "Shark Tank" from here?. Where people with a great idea, or an invention , can go before these 5 millionaires and ask for money to get their idea to market, for a percentage of the profits. Some are brilliant, some..not so much

Back to the topic: If I can set myself up as an example, looks like finger drift, toe drift and ulnar drift are just displays of what RA wants to do to us. The best preventative would, again, surely be early treatment, so things don't get that bad, so the disease process can be slowed or even stopped, early. Once the deformities are made, there isn't much, other than drastic surgeries, to correct them.

For anybody curious enough to google them or look them up in a medical dictionary, they are: Synvectomy, Distal ulnar resection, and proximal row Carpectomy. I haven't looked them up yet either. Now must get ready to go to grandaughter's Band Concert. L.xx

Thanks Loret that's really helpful. Even now I'm not sure if I am imagining the ulnar drift and find myself studying the fingers and hands of others a lot. My Tai Chi teacher for instance has sticky out pinkies too - and even wonder if they always did and I've only just become aware of this - although OH is adamant that they have changed shape so he's probably right. You are really amazing Loret - I hope I'm as stoical and full of good humor and generosity when my joints are all doing such crazy things!

My wrists aren't even sore at the ulnar joint now - it seems to have moved round to the underside of my wrist and I notice that when I'm driving I get stabs of shooting pain down there instead. Both my little finger are pretty nuts tonight though - all bruised and swollen at the middle joints whatever they are called. Physio wants to get me day splints that hold my fingers together so rather interested to see what she comes up with in March when I next see her. TTx

Hi Tilda, Thought I say 'hello'

The methatrexate will be responsible for you itchy skin, I had this on my face, on my laughter lines I had a rash which would not dissapear, it drove me crazy-but if this is the only side effect you have your better off sticking with the Methatrexate, cos when I came off it 5 weeks ago (I was on 25mcg a week) I noticed a difference a week later, now I am in a state, as the other meds take 3 month to get working.

I am suffering with my fingers,knees,neck and hands, im terrible tired also.

Caroline xx

Thanks Caroline - I must say that I woke up covered in itchy bits again this morning and had to plaster various of the boys spot prevention creams on me - it's sort of fine acne on my nose - and I've never had acne before in my life! And then itchy on my forehead and laughter lines as you say. But I'm a bit in love with MTX for giving me my wrists back and I feel generally pretty well although still falling asleep most afternoons without meaning to. I know I'm really lucky to not suffer any worse side effects than a bit of itch on my face. I took Sulphasalazine last year for 3 weeks and had to come off it as my skin fell apart and I felt constant nausea and got extremely painful swollen glands/ lumps around my neck and ears so I wasn't expecting to take to MTX so easily!

Because my liver function became raised on 15mgs of MTX around New Year my GP made me drop down to 10mgs and that was when I had a couple of nasty flares so I think I need the higher dose - just hope it continues to work and my liver doesn't play up again. Hope your new drugs kick in soon you poor thing - don't envy you - I hope I can carry on with the MTX. TTx