I was diagnosed with RA in December and started methotrexate. I have been reading posts in this group and searching previous posts and finding them so helpful, thanks to everybody who shares their experiences.
I have noticed quite a lot of people sharing about joint surgery and joint correction and joint damage. I am wondering is this an inevitable part of RA or are there any things to do or things not to do that could help to avoid the need for surgery in future? Any experiences that could help somebody new to all this? Many thanks.
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purplecyclist
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Don't know sorry, but I wound be interested in others advice. I'm worse in My hands and wrists, so not sure if I should use them as normal or rest them more, or avoid certain tasks ?! Am I doing further damage seeing us we need to use our limbs every day?
I was told right at the start 30 minutes doing whatever then rest ie using my hands gardening. Pace yourself. If whatever started hurting before 30 minutes stop and rest. Use hand and wrist splints when your doing stuff if you can. But keep moving, even gently if needed when you can as it helps your joints. The main thing is don't try to do too much if/when it hurts. Ice if joints are hot, heat if cold. There are exercises on Versus Arthritis on YouTube to help keep your joints moving and strengthen your muscles.
The thing is with me ( and sorry purplecyclist for stealing your post here, 😍) my hands and wrists hurt constantly, 24 hrs a day even if I am resting. There is no let up ever.
I have been on mtx injections 15mg for 12 weeks now and other than one week where I managed some gardening the pains\stiffness has been the same. My husband now has to cut my toast in the mornings.Have called rheumy nurses today to ask for advice. I have fibromyalgia, and I know there is some osteoarthritis in the fingers as well as the inflammatory arthritis. Am seronegative so have no markets in bloods.
I seriously don't think I should be in so much pain 24 hrs a day??
No you shouldn't I agree. Sounds like your meds need upping or changing. Good that you have asked the rheumy department for advice. I was like that until I went onto the biologic Benepali. When I was on MTX my rheumy told me to slap voltarol on them too and put compression gloves on, that helped a bit. The physio department also made me special splints that hold your wrist and fingers in the right position for sleeping and to wear when I was on the house doing nothing. They are very restrictive but they did help. I still have pain from osteoarthritis and a spine that isn't good from degeneration. I hope they help you more by sorting your meds out. Are you on anything for fibromyalgia. My sister has that and takes 5 amitriptyline a night. X
Thanks Haz. Sometimes I dont really know how much to expect from meds. Voltarol doesn't touch the pain unfortunately but I do use ice packs. Thanks for your reassurance in your reply. I will await the rheumy team to call back.
I was referred to a hand occupational therapist in April 're splints and physio exercises but heard nothing yet. 2 of my fingers are very wonky now.
I was referred to a physio in Jan but they won't touch me as it's too complex! GP has now referred me back to a pain clinic as they too refused to see me.
Fibro wise I have begun on amitriptyline, a low dose to build up as I need and tolerate the side effects. I do find it hard to have so many conditions going on at once, so never 100% sure what type of arthritis is causing the pain. Hence my GP trialling the amitriptyline and so also take naoroxen.
I suspect the fibro intensifies the pains as well. Fun this isn't it? 🙄
Thanks for reassuring me I shouldn't just be trying to continue in so much pain and stiffness. Appreciate that so much x
No problem. Yes 1 thing wrong is bad enough but more can be... Oops nearly swore then 😉 no don't let them fob you off. Try ringing to see if you can be put on a cancellation list for physio, scans etc. I always do and usually don't have to wait too long. Xx
Damaged joints can need surgery so the best way to avoid it is to get your RA under control as quickly as you can therefore avoiding damage, take the meds offered, keep in touch with your rheumy and let them know if you think your meds aren’t working. There should be alot less people needing surgery in future as more and better drugs are now available than in years gone by and people can be put onto biologics much earlier than in the past too.
It’s not an inevitable part of RA and you have to remember that groups such as these will always attract those struggling and looking for answers whereas those who found their drugs are off getting on with their lives and have no need to post. Fingers crossed this will be you 🤞🏻
No…joint surgery definitely is not inevitable. I have been diagnosed 25yrs + & needed no joint surgery…..Just neuromas removed from feet & one carpal tunnel decompression. My hands are now affected by osteoarthritis, but my doctors advise not to resort to surgery….I can still drive safely, and manage in the kitchen with all the helpful gadgets available theses days.
It seems a very individual decision…you either have enough damage to need surgery if you don,t.
In fact now I come to think of it…..I just use a knife with a round blade end to open jars….turn jar upside down then insert blade between lid & jar ….& push down….it breaks the vacuum seal. ..& jars pop open
Then I have a thing like a plastic mug with V shaped inserts to use as a guide cut fruit like Apples into sections..then it’s easy to peel ,& another similar gadget to cut vegetables…& I only buy wine with screw tops….corks are are beyond me!
atm I’m looking to find something to bend an under hanging insert shelf….so that I can shut two kitchen cupboard doors…in fact anyone one with strong hands will do…so my male neighbours had better look out!
I have had my knee replaced and my toes straightened. The toes being straightened i wouldn't bother for all the trouble it took, as my are starting to bend again. xxx
All RA progression in individuals is different, some will get severe joint damage,others will get mild .The thing is to get onto meds that controls your RA
I am a member of a golf club and with an ageing membership I notice that lots of people have had knee and hip replacement. These people do not have RA but osteoarthritis which seems to be the culprit. I am hoping that controlling symptoms will help reduce the onset of osteoarthritis but it can just be ageing or maybe genetics. 🤞
I've had RA since I was 6 and I'm now 60. Surgery started off with spinal decompression and fixation in 2002 (31 years after diagnosis) followed by hip replacements in 2008, 2009 (infected prosthesis) & 2010. I'm currently on the waiting list for an elbow replacement and shoulder replacement but, I have put these off for over 20 years. After that I need the other elbow and shoulder replacing.
Putting off surgery for so long might sound mad, but having surgery at a younger age would put me in a position of requiring revision surgery at a later date which may not be so successful. A foot surgeon refused to give me an ankle replacement as he said it would upset all my other deformed joints and eventually would lead to a fusion and considered me too young in my mid 50's!
If you have only recently been diagnosed and get on to modern drugs, you may not have any joint damage. Things have changed quite a lot since I was diagnosed and you hopefully should have a better outcome.
The potential outcomes for anyone being diagnosed with RA today are far better than anyone who was diagnosed say 20 plus years ago.
The choice of disease modifying drugs and introduction of biologic drugs means it’s more likely your disease will be brought under control, and while it’s controlled your joints are protected from damage. So keep in contact with your rheumatologists and let them know if your medication is not working so they can find the best combination of drugs for you. Good luck 👍
The best way to avoid joint surgery is to avoid joint damage so do your best to keep your RA under control by taking your medication and keeping in touch with your rheumatology team, they are not mind readers so they will be assume you are doing ok if they don’t hear from you. Don’t be afraid of being a nuisance and be persistent if you need them. Also eat healthily and maintain a sensible weight (being over weight puts extra strain on your joints)z, however I appreciate that’s easier said than done for some people. Lastly, keep moving. The type of exercise you do will likely depend on how active you were before diagnosis. I’ve found swimming, aqua aerobics and pilates have all been good for me at various times. The best has definitely been Pilates.
The other big thing to remember is that this forum and others like it are tremendous source of help and support but they give a very skewed picture. Most people who post here are the ones encountering problems and so are looking for advice and/or support. The majority of people with RA are well controlled and are busy getting on with life.
Hi there! Others have already answered your question really well. Just to add that it's good to have lots of tools in your armoury to reduce joint inflammation, as that's what leads to the joint damage.
Yesterday I listened to a special edition of Michael Mosley's Just One Thing podcast. The episode is called Inflammation. It's an interview with an expert. It's an easy listen and contains good, common-sense advice about keeping systemic inflammation down. Maybe look it up?
As many have said before, there is no guarantee that you will need joint surgery. With more modern medicines in our armoury the chances are greatly reduced especially if you keep moving. NRAS have some really useful pamphlets on practically everything and they're free! Some gadgets will suit you and some won't. I have a drawerful of 'good ideas' which simply aren't used. I wouldn't buy anything you don't actually need for now. Plug pulls are essential in my view
The only surgery that I have needed so far (and I'm 83 years old with a disease onset at 37years) was secondary to an injury from falling down a mountain and fracturing my leg and ankle.
I would echo the posters who have said - keep active and your disease quiet with medication. If your pain and swelling is not controlled, then nag politely until it is.
Thanks for the encouragement, I certainly want to keep active, I don;t think I could manage a mountain right now but certainly feel glad to think I will again if I keep moving and taking the medicine. Polite nagging will be my new thing.
It may be that some do but with medications that work it will be less and less common sadly not for all but most patients. I've had surgery on my foot and it really was no big issue in fact I'm very grateful as since it was done, a good 6 years ago now, my foot has remained normal. I don't know of anything other than getting the RA under control and staying active which can help. Of course healthy bones help so make sure you have a good balanced diet and take any medications offered. I was prescribed Ad Cal D3 some years ago and last year by accident broke my leg and ankle. Both mended as normal so I think the D3 really helped but it's not a magic bullet just might help. Otherwise I've no deformity or joint damage but the RA has been under control for years just with the odd blip. Every time a new drug comes on line things improve so don't think its inevitable but a sadly though an uncommon situation.
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