RA was diagnosed Christmas 2020. By summer 2021 I was settled on methotrexate and seemingly stable. compared with pre RA I am much weaker physically but still quite active for my age (84) Walking is much worse than previously but then I also have untreated osteoarthritis in both knees.
I have odd pains.mostly in the night. They have varied from, something like tendon cramp in both lower legs, to pain in both ankles. My wrists are sometimes painful. There is a noticeable symmetry.
Curiously, the frequent, and often severe, nocturnal leg cramp I had experienced since my teens, has disappeared.
I am somewhat depressed by the implicit prognoses but mostly try to ignore the disease - other than taking the tablets - and get on with a life a bit more limited than I would like. I can still drive and do so a lot (though restrained by Brexit, and a sense of responsibility re Climate change.)
I have no idea what the prognosis is and virtually no informed contact with the medical profession.
My GP is aimiable and responds to other problems. Concerned exploration over sudden raised irregular heart rhythms overcame an appointment to review RA progress, though I was admonished for not still having them by the time I saw him (the appointment was two days too late).
Reading the interesting material on this site creates a considerable degree of apprehension as well as sympathy.
RA is a complex and medically interesting disease. It evidently reduces life expectancy. I am 84.
For the moment I am inclined to try to keep living as if I am not ill, though I shall keep taking the tablets.
I would like to feel a partner in a type of medical 'team', but probably have no justfication for that other than the fanciful promises that are sometimes mentioned here.
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Colaba
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Also I am younger ie 58 but I see a Doctor if I feel some this not right but if bloods ok ish and I am neutral not too much pain and side effects I just roll with it. My consultant once said 18months ago Dee this is it! I left feeling awful but the consultant view he had got me to the best place he could but I just had to cope with it all and learn what worked for me.
It’s a bumpy ride with all the add ons from heart to fibro and maybe lungs but if something is not right I see my GP and if he feels it needs investigation he will sort.
It used to, but with modern treatments and informed self-care should make no difference at all.
RA as you read on here is very variable in how it affects people, and generally people don’t post when they are doing well and off climbing mountains. And some have a very bad time as they don’t respond fully to the treatments.
If I do too much then, and get too tired it can be problematic. But in general osteoarthritis (which I have in many places) and tendonitis give me more grief on a day to day basis than RA does.
I do not deny that which is why I said “And some have a very bad time as they don’t respond fully to the treatments.”
Also, despite what WebMD say, life expectancy with RA has changed. There are many research studies showing this , eg *Our findings indicate that since biologics became available, RA patients have lived longer”*acrjournals.onlinelibrary.w.... One can easily find loads of others if one goes beyond the first item on a google search.
There is also greater understanding of the risk factors associated with RA. Which is why I said “with informed self-care ”. So minimising one’s cardiac risks is very important, as well as basic stuff like stopping smoking, maintaining a healthy weight, taking exercise even if housebound, and not eating rubbish.
NRAS itself says “Rheumatologists anticipate that more effective control of RA will not only improve quality of life but also improve life expectancy in patients, and with databases such as the BSRBR, and similar registers across the world, the story is becoming clearer.
Yes, that is what we all must do. My life remains interesting. I only seem to be gloomily preoccupied when I write to this site.
I am endlessly surprised to have become so old and to remain as active as I am. It pleases me that there are so many things I can still do, even though I mourn the passing of those I can no longer manage. The bow saw is much more ecologically friendly than the chainsaw and so much quieter.
This week, however, we shall be trying to sell our old boat as a necessary adjustment. Being taken with some kind of seizure as a skipper responsible for others at sea is clearly an irresponsible prospect.
I fantasise about obtaining a smaller boat to use alone on the wide French river where we have a little cottage. That may turn out to be foolish, but much of life's pleasure has been based on anticipation. often of unrealised joys.
Towards the end that is clearly a diminishing prospect, but natural enough with which to persist. Some of the ancients who anticipated eternal glory if they endured enough misery in life, have been venerated, even followed. My inclination has been different and remains so.
In a review of various sources (including the NRA site) there is general medical consensus that RA does indeed reduce life expectancy.
As a biologist & medical professional, I am well aware of the many advances in RA treatment. However, there remains a large population of “non-responders”.
For those of us who have experienced severe, uncontrolled RA (& it’s constellation of complications & comorbidities) - quality of life extension is also a major issue.
One can say that many things CAN reduce life expectancy. As a medical professional I know you are aware of this. Quality of sleep, where you live, diet, heredity, diseases, chronic conditions, mental health conditions, chronic inflammation, etc. It isn’t about one thing.
I didn’t mean one thing. Didn’t say that, but you have to factor in many things together to estimate life expectancy. And then…….it often misses the mark. I had a great aunt with RA. Unfortunately it hit when she was young and long before useful medications. I remember her getting gold treatment. When I was little I was afraid of her because of her bent posture and severely gnarled joints. Now looking back I cringe thinking about the pain she must’ve been in. She did live a long life and somehow managed to function. Died from cancer, which had no relationship to the RA.
Facts: RA patients are at higher risk for heart disease. stroke, cancer, anemia, lung problems, blood clots, diabetes, vasculitis, eye problems, sleep & mental health issues, and more. (& add on the side effects of the drugs we take.) These factors influence longevity.
Yes they all do. Any combination of these. As I said also where you live, etc. Each individual case is different. This is what we must be mindful of. It isn’t always a bleak picture. It doesn’t affect everyone’s life span. I think those of us responding to you feel as if, and we may be wrong, your statements are a bit black and white. I don’t mean to offend. I guess it’s more an explanation of why I’ve responded. I think we just have different points of view. As with all things everybody is different.
RA is a complicated disease, with varying degrees of severity (mild-moderate-severe.) Up to 40% of patients are unresponsive to RA meds/Arthritis Foundation.
I have experienced severe, catastrophic, sudden-onset RA; so I am very sympathetic to anyone who suffers from this chronic disease.
Of course, a forum will invite various opinions. The info I provided was not my opinion- I provided a factual/science-based reply.
I am quite weary & undone by the antagonistic manner in which many members have replied to me.
I remain appreciative of validated NRA information & support.
Facts: RA patients are at higher risk for heart disease. stroke, cancer, anemia, lung problems, blood clots, diabetes, vasculitis, eye problems, sleep & mental health issues, and more. (& add on the side effects of the drugs we take.) These factors influence longevity.
Facts are facts. Accusations of “catastrophizing” are unkind & invalid. As a scientist, I deal with and accept the facts, not feelings.
The fact is: “The sky is blue”, even though anyone can believe or say otherwise.
That is your belief….thankfully everybody’s opinion differs…..it is far healthier psychologically to be optimistic about our various RA conditions …….all of us coul fall under a bus tomorrow…..but we don’t dwell & worry about that…..so why do so about having RA…..sadly we’ve got it ….so let’s deal with it - with as much grace as possible, & really enjoy the good parts of our lives.
As you say - these are facts. Though some must be generalised.
Exceptions, even if pleasing, are a part of that generality. To a degree my own remarks have been based on apprehension rather than the relatively innocous deficiencies that have come to me so far.
I have been able to adapt to a significantly weaker condition, more painful walking (partly osteo with a forecast of possible action in three years time - scarcely cost effective ). I have pains but they are not intolerable or permanent. That I am still able to drive has been a relief.
My apprehension was aroused by the evident difficulties and discomfort of others on this site. I guess my communcations here are, in fact, resultant from my total lack of any sense of being in some kind of a 'team'. That, I suppose is unwarranted egotism.
I do know that I shall die. I am not currently seeking that, nor, at present, are there any obvious imminent indications apart from age and decline (in significant part a result of tshe sudden discovery of RA at Christmas 2021).
My inclination as ever is to carry on much as before. There are necessary adjustments that may have been brought forward by RA. However, they are facts of decline - one way or another. I am older than any male in my family on record.
Yes hope does spring eternal. I’m sorry to hear you’ve had severe catastrophic onset. Of the many ailments I have I approach them all with a realistic optimism.
I truly did not mean to be antagonistic. I’ve just found this approach very helpful.
Your RA diagnosis and symptoms have to be horribly difficult. I don’t know your prognosis of course. Keep up the hope and as you know there are many medications available. I hope you can find one or perhaps a cocktail that help you. 💛
Very wise and well said. Statistics are very valuable, but individual situations vary greatly. One thing that factors in significantly is optimism sprinkled heavily into realistic expectations. I feel that helps me immensely.
Not with today’s drugs it doesn’t..I’m in my80’s, have had severe RA for 20+ years & with good professional treatment from my rheumatologist & various other clinicians, I’m doing equally as well as my friends in my age group…who don’t have RA.
I reckon if you think it will shorten your life,……it will!
I agree with your comment. I have had RA for 23 years, now 66 and been on methotrexate for many years which means I have bloods done every 3 months. That means there is always an eye over my health and I often think that although a nuisance I'm not ignoring things that could reduce my life. I try to see that as a positive compared to my parents who died too young from lack of preventative medicine.
Life expectancy, scary to think of. My daughter was diagnosed with severe RA at 17 and she is 31 now, I worry for her every day as she has been on Enbrel since 2010 and now needs to include 15mg week MTX tablets to keep the Enbrel working. She has not had a baby yet and would like to. She is 31 now, but meds are getting in the way of having to plan baby, especially MTX? She does not know what's best to do, could be risky with meds too? Any tips from anyone who has had a baby whilst having RA would be much appreciated.
I am only a couple of years younger than you & I would definitely suggest you get referred back to rheumatology.
GP’s no matter how amiable are not RA specialists, & indeed cannot prescribe the RA drugs that you could maybe benefit from. Consultant Rheumatologists can prescribe the latest drugs available for RA. ….& if any other condition is present will refer you to the relevant consultant.
I have had RA fro 20+ years…….always remember - age is just a number on a piece of paper. It’s what you make of it that counts.
I feel I am managing, quite well , maybe suprisingly so. I probably come across as more wimpish than is the case. I cannot ignore the diagnosis. I was, suddenly, very much weakened, but contiue to follow much of the life I had before RA. The things I am shedding may well have escaped others long ago.
Maybe I just don't much like beng old. However, I guess I should prefer it to the only likely alternative,
You sound as if you are doing fine Colaba. I now live in a 50+ community & believe me age is what you make it….I have neighbours in their 60’s, recently retired with no health problems who carry on as if they are a decrepit 90. But the real oldies, grasp life & enjoy themselves. I know which group I prefer to be in.
I am younger than you but I repeatedly question whether it is age or RA that requires me to change things. i’ve not yet found the answer to that question.
Wait & see HH….I am still 35 in my head,I refuse to dwell on a number on a piece if paper to define how I live my life.
When my RA rears it’s ugly head …I am just so thankful it didn’t find me in my younger years….as it does so many.
My friends & I smile when we discuss age…..we just get on with enjoying life as best we can…..seems to work out fine….so don’t fear the advancing years……all any of us can do….is live with optimism.
I am of the belief that when it is time for you to die nothing will change that disease or no disease. This disease takes so much away from us, but i won't let it take my sense of humour. I always say God only gives us what he knows we can cope with(no i am not a really religious person) and that we are warriors for what we have to put up with. I am proud of you all and the staff at NRAS. Well done everyone.xxxxx
My mum always said 'when you are born you have a 'date stamp' and that's it.' At 90 she was sick of being 'messed with' by doctors and begged me to tell them to leave her alone to go peacefully if she ended up in hospital again after many many trips in ambulances to A & E. I did what she asked. It was very hard to say it to the last doctor she saw in hospital, broke my heart, but even though she couldn't hear what I was saying she squeezed my hand as if saying thank you. It was her 'date' 7 days later and it was very peaceful. So I'm with you Sylvie. 🌹Xxxx
This post was the first I read today but hey ho it never crossed my mind my years could be shorter. I'm 76. I could go out and be run over. Live for today and let tomorrow take care of itself.
I take my meds and carry on... I am lucky I work full-time, I have an admin job and I can work from home. I recognise now when to stop, and when to push myself. I have been finally pushed into remission, catching coughs, colds etc is a real worry for me I go downhill quickly. I think there is a balance, you have to find your own.
in Uk the treats are slow and we shouldn’t be seeing by go instead a rheumatologist.
The protocol I nhs is put you in cheap medication to see how respond and later if is convenient they give you the right treatment.
I been experiencing a hard road since a got this illness two years ago,
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