I am 51 and had a preliminary RA diagnosis (not 100%) 4 weeks ago and am on Salazopyrin following steroid injection.
No significant/ obvious impact of drugs to date on symptoms, but know its early, so just looking for some light at end of tunnel or a reality check.
Prior to RA coming on overnight I was very keen and active in most Outdoor Pursuits (Skiing, Trail Running, Mt Biking, Kayaking, Open Water Swimming etc), one of my reasons for moving to Scotland to complete Munroes (now done).
Just wondering if any people on here of similar persuasion and their experience following diagnosis, what worked for them and did not and how long it took.
I am trying to manage my expectation as this was a big part/ most of my life, but thinking things are going to be very different. I have managed to swim, more float and can sometimes hobble around block each week, even managed a 30 minute flat cycle ride yesterday.
Is it time to except I need to sell the skis, or should I wait and see at least for a year or so.
Thanks
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Steroids will be masking things right now, so take it easy. But you will learn how to find the right balance between exercise and rest. Do not do anything strenuous that puts pressure on joints that are inflamed, but once calm then building muscle strength will help protect joints.
4 weeks in absolutely nothing in RA worrld. See how you are in 6 months!
Thanks, a great post and some hope and inspiration for the future, accepting that we are all individuals and reaction and effectiveness to treatments vary, just helps to keep positive real experiences.
No it isn't it might take time and RA once in remission is no more than inconvenient , obviously not for all but I walked up and down Snowden, danced a lot and cycled a lot not road racing but off road. I rambled and bird watched not high impact sports but still easily done. You clearly might not be so lucky but equally you are better travelling the RA path with hope rather than being downcast; after all you can't change it so it has to be lived with. The meds take time to work as well so don't think its take and better in a week but it could be 10/12 even 14 weeks before remission is achieved and some meds also have some side effects. These for me were easily dealt with but others are not so lucky. I''m RA sero positive with the pANCA diagnosis and think that may make it easier to get under control but it wasn't quick. xx
It's an irritating phrase, but if you don't know what to do for the best, it's best to do nothing. Your health can change for the better or stay as it is. It might even decline, but if they aren't in the way I'd keep the skis. Who knows what the future brings? The meds for RA tend to take their sweet time to work and gentle excercise (without over exerting yourself) will help
Hi Keep the skies for now. I was hobbling etc when I was first diagnosed and you do have to listen to what your body is saying....so rest regularly and treat yourself very gently and, as someone else has said steroids are brilliant but they masks things so it is possible to overdo exercise. For me, now years later I am back managing to do nearly everything I want and I took up dancing to help me. Initially I was wearing clog type shoes but now 15 years later I am dancing at International level and walk 10,000 steps each day...... BUT I know when to rest. It is a long and sometimes complicated process but you can achieve some of your goals. Hugs and thoughts
Don't hang up your skis yet. I struggled to walk on diagnosis but after being prescribed methotrexate and adalimumab in 2006 my arthritis want into remission and has stayed there ever since. I am off skiing on Saturday to Bad Hofgastein. Hope to catch you on the slopes sometime!
Don’t sell the skis 🎿!! Please give yourself time and with hope and patience you will get back to physical activity. I go to the gym 5 times a week and do high activity classes, I walk every day and most weeks achieve in excess of 85,000 steps. In time, build your strength in your muscles to support your joints. I was diagnosed in 2019, now almost 4 years on life is good, keep taking the medication, listen to your body and have hope!! Sending love to you.
I would say do whatever is comfortable for you. Exercise in any shape or form is good but your body will tell you what you can do and not do. Keep the skis you could have many years of skiing yet. Be positive, keep doing what you do when you can and if you find anything is difficult adapt. Our bodies are amazing and our minds too. Your mental attitude is very important. I know this isn't the same but it just proves that you can do things you want to do. I have had RA for 20 years and for 10 of those years I always said to people that I could no longer sit on the floor etc because I wouldn't be able to get up again. That all changed when my granddaughter came along.....yes, I was never off the floor after that. Never say never. All the very best to you.
Definitely wait & see…..and don’t try to be Superman & overdo things now that you will regret later.I was not nearly as active as you….& a few years older …when diagnosed 20+ years ago & like you my RA appeared overnight just as I retired & when I was hobbling around I thought my active life was over……it wasn’t! Unfortunately..it’s quite likely you will get worse before things improve.
RA drugs don’t work overnight…certainly not in 4 weeks, & the first ones you take often don’t work at all…..so prepare for the long haul…you will honestly be surprised how joints that today seem useless will come back to life.
I had a very supportive rheumatologist….& I saw a physio privately for a few sessions to see how energetic I should be. So give it time, try not to get hooked on steroids & you will find the level you can achieve….but it will take time.
Most of the RA drugs take a while to kick in i have read about your drug and it said up to 3 months is not uncommon, I'm on methotrexate and trying out a bio jab, I can spend 3 hours walking round a field metal detecting without to much discomfort and I'm 70 so hopefully you can get back to speed soon, if it doesn't seem to be helping call the RA nurses at the hospital they are brilliant.
Hi. My situation is quite different to yours, I’m 74 at the moment and was about mid sixties when I got RA. But I was a very active person in my younger days, I live in Wales and used to go mountain climbing/ hill walking regularly.
What I would say about RA is that it all depends on the severity of the disease- some people are very lucky, and even though it impacts their life they still manage to live a reasonably active life ( I don’t know of any marathon runners with RA ) and other people aren’t so lucky. It’s important that you get diagnosed and onto medication quickly, otherwise your body can be permanently damaged by the disease.
It has taken me a few years to become reasonably active again, and I have had a few setbacks ( heart attack last year ), but I’m doing ok now. As other members have written, it’s important to learn to pace yourself, both physically and mentally as RA is always lurking in the background ready to turn your symptoms into flare if you over do it.
I wish you all the best on your journey and hope that RA is kind to you.
Hi, it took me about two years to get back to being able to do most things I did before RA. Some I do on a lesser scale, but stretching the limits all the time. Able to walk Haystacks, Great Gable, Stac Pollaidh etc. Don't give up and carry on exercising, but listen to your body and rest when it tells you to. Stay in touch 🙂
There is no reason why you should not get back to doing most, and I mean most, of the things you did before. Once under control, and after building up my muscles again (steroids are not good for muscle strength!), I was able to get back to walking and scrambling in the mountains, but not climbing. I did cross country skiing and lots of other sports. It's only now in my eighties, after more than forty years of treatment that I'm finding it difficult to do things.
BUT, you need to take things slowly and build back up as you would after any layoff. And you are not yet under control.
Whilst you are right to concentrate on movement and exercise, which indisputably helps RA, do also pay attention to diet. I am guessing that if you are in Scotland, you like a drink - and maybe also eat red meat. Unfortunately, alcohol can have a very bad effect on RA as it increases the inflammation, as does red meat and fried food.
I have recently been going through a bad flare and started having sessions of electro acupuncture which I find marvellous. Unfortunately, I went to a funeral on Wednesday which started at 1 pm and the wake was not until 4 pm. There was only food with meat in it which I have rarely eaten all my life. I had a couple of small sausage rolls, quiche with ham in it and a half sandwich with meat in it. It greatly increased the pain and stiffness of RA.
I went out on Friday night for a friend's birthday. We had champagne and a glass of red wine which I find do not exacerbate RA. However, I had some white wine when I got home and the next night, and the effect was horrendous. Beer has an even worse effect. There is an anti-inflammatory in red and I find it does not exacerbate RA, and nor does champagne but I do not know why - maybe it evaporates very quickly. I've been experimenting and gin, shorts and port are all bad.
As regards exercise, I find the easiest and most helpful is swimming though of course you need easy access to a pool. I had RA come on overnight in 2014 in the hands and shoulders. Doing the backstroke really improved stiffness though the first length was tortuous - I took a painkiller beforehand. After the second length, I was fine and it helped greatly both with pain and movement.
When mine came on overnight midweek, I was expecting visitors and had to clean up. I got down on the floor to polish a large double lounge with wipes and polish and could not get up because I was so stiff. I carried on for two hours and by that time, I had loosened up quite a lot, got up and carried on.
I can't tolerate the RA drugs - it came on suddenly at age 65, nearly 66. I am now 74 and I just feel I am and was too old to risk the drugs and I have a chest condition which they affected.
By the way, I have an in-law who has done masses of research into diet and RA for a pharmaceutical company she works for, and diet undoubtedly does affect it. She had been hoping to be a doctor but went into research instead.
Hello, triathlete here! The short version of what I did after diagnosis:
1. Cut out high-impact sports activities and anything that caused joint discomfort until I was settled on a long-term RA treatment that worked for me. For me that was about 18 months.
2. Once I was settled on the treatment that worked, I eased back in to my usual activities. And I mean eased! It took me 5 months to complete couch to 5k after months of not running. I had a few aborted attempts at returning to running when I tried it but my feet and ankles felt bad for days afterwards.
3. Adjusted my expectations. My body truly isn't capable of doing what it was before RA, even if I'm in remission and feeling good. I had some CBT sessions that really helped me to come to terms with the fact that I probably have to choose between pursuing my Channel swimming ambitions and being able to continue swimming into old age. Likewise, I will probably now stick to sprint distance triathlons (the version with the 5k run).
I also learnt some lessons.
The fatigue with RA is something else, and I had to change my lifestyle in order to enjoy my life. I used to be a postie, and the 9-12k of plodding the streets used to make me just nicely tired. With RA, even in remission, I was wiped out by the end of a shift and fit for nothing except collapsing on the sofa for the rest of the evening. I miss being out and about now I'm in an office job, but I have the energy to do hobbies in the evenings.
I still need to take extra care to listen to my body and do things gradually. In my return to running I did great at building to 5k gradually, but then I got over confident about what I could do, and built to 10k in a similar way to how I did it the first time (years before RA). Big mistake. This weekend I did my first 10k event. My knee was not happy about it, and I've never had knee problems. I did similar in training for Coniston end-to-end last year - picked up a shoulder injury even though I've successfully trained for longer swims in the past. So the lesson here is clearly to build a strong base and progress very gradually.
So in summary, hold onto your dreams and your skis. It might not be possible or wise to do these activities yet, but I think you can be optimistic about being able to do them in some capacity in the future. Hope the medication works well for you 🤞
great post thank you so much for that Chilly swimmer! (I’m not the person who asked the question). I agree that pacing is critical and I too sought psychological help which was incredibly useful. Thank you. Best wishes in your adventures!
Thanks for all the real life comments and experiences, much more helpful than anything else, I am positive that whatever the future holds doing some of the activities that I love will (eventually) be part of it.
hi. I was diagnosed with RA around 13 years ago. Been compliant with the drug regimen since day one and it has taken a ton of fiddling to get the right combination which is still ongoing (on max methotrexate and a biologic). I am very fortunate because I never had crippling RA that for e.g. left me bed -ridden, but did undergo two significant back surgeries (not likely related) and struggled with significant fatigue. I live in vancouver Canada and like you open water swim, snowshoe our mountains, walk tons, kayak etc. I was a marathon runner but gave that up as I found running too hard on the body (I’m 64). I believe it is essential to remain active and do as many of the things we love to do for our mental/physical health., and within our abilities. The fitter we are the quicker we recover. AND you need to listen to your body when it is in a flare…rest! overdoing it is not helpful. When your body is screaming, listen. You are early in your process understanding what this is about. When we need rest, we need rest. I also realised I need to treat my body like a temple with extremely nutritious food, very little booze etc as the meds are taxing on our livers and kidneys. I also noticed booze, red meat , dairy and eggs really aggravated my RA so removed them from my diet. My goal is to remain as active and fit as possible and adapt, if I have to, as I go. I’m not sure I’d sell the skis quite yet…give it time to stabilize your meds. Trust me I’ve cried after every single rheumy app’t and drug change (and denial), and now realise how much she has helped me to remain active and to live a full happy life. We can’t however continue to mistreat our bodies with poor lifestyle (which I’m not implying you do-I’m talking in general). Our bodies need first class care now and going forward. trust me I live a full active life, with little tweeks as needed, and plan on retiring that way. I wish you the very best in your heath! Don’t despair.
I have just joined this community so am a little late seeing your post - sorry.
I was diagnosed in early January and had two ski trips planned with hubby and friends, both arranged ages before I had any pain or any idea that I would be diaagnosed with RA. A steroid injection helped me a lot and my GP and consultant said if I felt like going on the first trip (a week after the injection) then it was up to me, although I may feel like doing less skiing than I had before my diagnosis. I skied 5 days, with a day off in the middle, and felt great. The pain at that stage was mostly in my hands and my group of friends helped carrying my skis when they weren't on my feet which seemed to be the trickiest part.
The second trip hasn't been as successful as one knee had swollen before I came away and it really doesn't like skiing! I tried an easy run on the first day then stopped and rested for 2 days before trying again, but still not great and I had no confidence in my knee's strength, so am treating this one as a relaxing holiday in the mountains and social time with friends in the evenings. I am still not on methotrexate but am due to start when I get home and I am hoping that getting onto a proper RA management programme will mean that I can to plan future ski trips as well as get back to walking and maybe even running. I know I will need to adjust to a new 'normal' but I am certainly not ready to sell the skis just yet.
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