Need a helping hand

Hey 'all!

Been on this RA journey for 3 years & was doing really well with diet/lifestyle changes (been vegan/veggie now AIP) got off predisonal & hydroxychloroquine & down to 10 mg MTX & signed off in remission September this year..yea!!.. right? However since off the HDC, September, started having gradual to regular flares, then had low platelets on last bloods n told to stop the MTX for two weeks.

Back on the MTX (only been two weeks) after more bloods showed everything was ok ...but in bits..RA super active & mobile, so hitting feet, Knees & Hands -

My hands are the issue, the tendons contract in the night when I sleep & I cannot open mine fingers in the morning..doesn't feel like normal stiffness, cannot open them for the whole day & now having to sleep in splints..which really painful :(

Does anyone have tips, RA hacks, experience in this? Open to any advice Thanks :)

21 Replies

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  • Sounds pretty normal progress in RD!! But I'm sorry that you are having a bad flare after thinking that you had cracked it.

    It's obviously back to the start again with finding out what controls your particular brand of RD. Do you need to go back on the HDC? Have a steroid boost to tide you over until the other DMARDs start working again?

    And that's also the problem with dietary measures - just when you think "Wow this is really working" RD comes back to bite you.

  • Thank-you, its good for sanity check..thou feel like I am loosing mine regularly! I think you are right, my body really needs a anti-inflammatory - and had no problem on 200mg HDC daily, its when I came off triggered something!

    I am happy to go back on it but will try & get some steroids ..asap! just surprised how quickly I have deteriorated from two weeks with out MXT!

  • Oh Hun.....I really feel for you.......I know that feeling when u think you have the disease under control esp with diet and lifestyle etc......I was the same earlier this year......feeling very pleased with myself and like I was in control of my life! Yeah right that lasted about 2 weeks and then I was having horrible flare up after flare..........please dont be like me and leave it too long to go back rheumy...I suffered for months......your hands sounds terrible and it sounds as tho u need serious meds to sort them out......u don't want deformities .....( my thumb is deformed although luckily they gave me surgery to correct it..)

    Get some steroids in you( I find tablets stronger and much better, injections did precious little, too mild) and get your rheumy to sort u out some decent dugs.......asap.......I really hope you get it sorted out

    In the meantime try soaking hands in how water with Epsom salts and take painkillers to help .......inflammation. Have you got some good ones??? ..good luck....

  • I would say try asking to go back on hydroxychloroquin for a while, it sounds like things have got worse as that has worked out of your system which can take 3 months. Blessings.

  • Spot on with the three months part - thank-you appreciate your advice :)

  • Please dont go on or off anything without proper advice, thats just how it seemed to me with your description, i made a huge mistake trying to reduce my meds and not allowing enough time for changes to happen, you have to remember with a lot of the meds you are not dosing for now your dosing for maybe 10 days time etc, it is almost like a production line effect, very few RA drugs or similar are fast acting. Blessings.

  • Hi, Thanks for your concern, any decision either going on or off meds is always discussed with my rheumy consultant or nurses, and done with their consent.

  • My hands have suffered badly with this disease. Like you, at there worse I was in significant pain and this seemed worse at night. I used splints during the day when they felt really bad but at night I was given gloves by the OT which calmed the swelling in my hands and soothed them- these made a big difference to my being able to get some sleep. Maybe you can ask about them? I hope things ease off for you soon.

  • Hands are the worst :( But then so are knees & feet..thank-you for tips :) I don't suppose you know what the gloves where? I have some compression gloves that make me look like I am straight out of the 80's, but will will get them on pronto to see if they help!

  • It may have been compression gloves? Right out of the eighties sounds about right ! However they looked, they really did help. Best of luck with it.

  • IT took me a fair while to get my head around ....that for me....taking Dmards was the way to go to get my life back. After 4 Dmards & 17 years I have just started Biologics.....I have very little joint damage & on the whole I'm living a fairly comfortable life for an old lady.

    Sadly no more tennis or long walks,but I fly all over the place on my own to either visit friends or just seeking the sun.

    If you can come to terms that taking some sort of drug is the way you will have to go......you will hopefully be less stressed & I find that it definitely helps to be tranquil. As I keep banging on about I broke my arm last week & the other arm is aching in sympathy because I'm having little strop because I can't get on with my plans!

    Hope everything settles down for your Christmas celebrations!

  • AgedCrone! Loved this (& the name!) thank-you so much made me smile! I did (& still do) have the quest to get to drug free remission, but totally get it with the meds! What was your med history? I only have turn 40 this year & am desperate to get active again..nice to hear from a few RA veterans that they have been able to have a good life balance with drugs - stress at the mo is a problem, work is very busy & time consuming, but must strive tone more tranquil!

  • Hi ellegee

    I had no med history prior to RA in 1999. I'd had a very active life as long haul airline cabin crew for 25 years, I had played lots of sport....tennis & ski ing & generally very active..then boom within a few months I was hobbling about with a walking stick. Irritatingly wrists & ankles are worst affected!

    Luckily I knew a medical researcher who happened to be working on rheumatic drugs &'she put me in touch with a rheumatology professor & I went from there...put straight on to Dmard which he said would ptotect my joints.......which they have..but it hasn't been all smooth sailing.

    I've had a few 6 month remissions...but the RA always comes back.

    I decided when I started seeing my present rheumy 10 years ago that we seemed to be on the same page & if I said no to something he respected that & thought of something else. Each time I think a remission is going to last he ...who is in his 50's - says I'd be the first full remission he's ever seen....so I am not holding my breath! Another blessing is I have no other health problems, although I did have cancer 10 years ago.

    I was extremely lucky in that I was already retired when RA appeared & as I have no dependants I don't have work or family stresses...but I'd sure like something like an au pair right now....existing one handed is a trial to say the least & I still haven't worked out how I will open my Christmas Day Breakfast Champagne!! But open it I will!

    Merry Christmas..hope 2017 is good for you. 🍾🍾🍾🍾🍸

  • Hi AgedCrone,

    Thank-you! I needed this blast of positivity today! I too hope to get bouts of remission,(prior to these last few nightmare weeks, I was in remission for about a year!) but also trying to accept if not!

    I have a new rheumy, but trying to get to see her is a bit... difficult, I am in the NHS cycle, so not always the quickest, but luckily I am quite tenacious! Great that you have good relationship with yours, sometimes I feel I am on a conveyor belt, however have a great RA phsyio!

    Ha ha good luck with the Christmas Day Champers, I admire you tenancy with that one, luckily I have a few helpers to open mine!

    Merry Christmas to you too!🎄🍾🍾🍾

  • I'm beginning to doubt my optimism...despite three different openers I have just failed to open a jar of hot Salsa which I really fancied. Off to the supermarket tomorrow to buy easy open dips.

    You forget you need one usable hand to actually hold the jar...dammit!

    I had a larger glass of wine instead..if this arm doesn't heal soon I'll have alcoholic liver disease!

  • Ha ha!! Always go for the easy open dips! Foil topped! Wine a good second thou! 😊

  • Just realised I can't ruddy drive to s/mkt.....will have to make do with local little grocer who won't have dips..unless they've got them in especially for Christmas!

    I getting daily more frustrated with this bloomin' arm!

  • Sounds like you should contact your rheumatology helpline x

  • Next on the list!

  • Hi ellegee I sympathise with you, I've had similar problems and now my hands are pretty bad. Over the years I have found hot wax treatment helped and I've been told that soaking in Epsom salts in warm water eases them making exercise possible. I assume that you have you seen an occupational therapist as you have splints. Wishing you well Carol xxx

  • Whichever diet you are on I would hope the choice is done using a process of careful elimination otherwise some foods may simply be aggravating your RA. Also sadly be aware elimination process can be very difficult with some drugs leading to false results.

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