Knowing what to expect

[Colaba]

I don't really want to tell a story. However, I do seek sound information.

It is now three years since I was diagnosed with RA. It diminished me physically, suddenly, and considerably. However, I am old and such a dimninution might have been expected at any time, I suppose..

I have complained before about not knowingly belonging to a 'team' in respect of my RA. That is a fact, so I tend to remain pretty clueless about what to expect. Maybe that is fortunate.

However, one of the threatened effects of the disease, the predicted episodes of pains, has so far been almost absent. I get nocturnal leg cramp again now, after a remarkable three year absence, but not yet as severely as I was wont to experience very frequently since my mid teens.

I remain able to drive, long distances and extended hours, which has been a great comfort. I am very apprehensive about losing that facility. We have a cottage in Brittany.

I have conceded the need to sell our boat, and fantasise about downsizing to a robust cruising dinghy to use on the big river that lies close to the cottage.

I suppose I shall just have to wait to discover what effect the predicted 'flares' may have. I would like to imagine they are not a compulsory feature of the disease.

I am apprehensive and a little depressed, I suppose. However, I have lived long and interesting life that bumbles on.

Will

[KittyJ]

of course flares aren’t compulsory😊 it seems you are one of the lucky ones who finds their treatment and have good control of their RA. I wouldn’t spend time worrying and wondering what may or may not happen. No one can tell you that as everyone’s journey is different. I’d concentrate on the positives in your life, you’re still able to drive and get out and about and have your French house to visit so enjoy the things you can do. As for uour RA team you do have one it’s just you don’t need to use/see them if your RA is under good control. Your hospital will have a team of doctors, nurses etc that are there for you if you ever need them. Things may have diminished since Covid but I’ve found if you need help you can access it still. Go buy that dinghy and get out on the water, there’s fun to be had 😊

[Colaba in reply to KittyJ]

Thanks,

It is too easy to become apprehensive. I was generally careless until the sudden shock of RA. Reading about it (here, mostly) led me to expect unpleasant pains as inevitable.

I take your point about an invisible backup 'team'. Perhaps they are there. I'd rather not trouble them and prefer life expectancy to do its job.

[KittyJ in reply to Colaba]

You have to remember that groups like this tend to attract people who have difficulties and are looking for answers and whose RA is not well controlled. All those people whose RA is well controlled are off out getting on with their lives and have no need to come to a forum like this. So remember that although some of the things you read here may happen to you they also may not, it’s such an individual disease you really can’t compare your journey to someone else’s.

[Sheila_G in reply to Colaba]

If I may reply to this Colaba, you will find that most of the posts on here are from people who are suffering in one way or another with RA. This is understandable as these are the times we most need help. However, there are many of us who are doing very well on our medications and I do post positively now and then to let people know that there is light at the end of the tunnel. Do read the posts because you will get a lot of help and advice from them but try to process them and not dwell on the negatives. I wish you all the very best

[Fruitandnutcase]

Colaba, I know I’m going to sound unsympathetic but you have an awful lot more going for you than a lot of people have so I would enjoy it while you can. If you’re able to drive for long distances and for extended hours then you’re doing pretty well.

I don’t have a ‘team’ either, in fact I’ve never even seen my rheumy and I’ve never seen the same person twice since being diagnosed in 2015 which suits me fine.

I’ve always just figured that’s because I’m fairly ok and don’t need any more attention and if / when I do then I’ll get it - or not. Meanwhile on the days when I waken up and feel like a truck has driven over me then reversed and come back again for good measure I top up with some paracetamol and keep going.

I can’t see any point in wasting the present by wondering about what ‘might’ happen in the future. Who knows what the future might have in store for us - in the meantime just be grateful and enjoy what you’ve got while you’ve got it.

[seabreezegirl]

Have you tried one of the Biological meds like Humera . They will slow down the progression and damage alot .

[bpeal1 in reply to seabreezegirl]

In the UK you can’t try biologics unless you have have tried 3 standard DMARDs and have active disease. From the information given by the OP I don’t think they’d qualify as their disease seems well controlled anyway.

[seabreezegirl in reply to bpeal1]

What a shame ,they work well .

[bpeal1 in reply to seabreezegirl]

Not really! Standard DMARDs also work well for many people. Biologics costs thousands so it makes sense to try standard drugs first.

[seabreezegirl in reply to bpeal1]

I am an RN in USA .

They can very much slow down the damage and pain of RA . Standred treatment does nothing to slow down the advancement and destruction RA does .

[bpeal1 in reply to seabreezegirl]

Painkillers and steroids don’t slow down the progression of the disease but DMARDs definitely do. There’s plenty of research to show that. Plus I know several people whose disease has gone into remission with standard DMARDs. However for some, standard DMARDs are not enough and in those cases I agree the newer biologics can be great.

[bpeal1 in reply to bpeal1]

nras.org.uk/resource/dmards/

[KittyJ in reply to seabreezegirl]

I have to disagree with this statement, standard dmards controlled my severe erosive RA for 20 years and stopped more damage being done and I’m sure from what I read on here that is the case for many. Yes biologics are great but if your RA can be controlled without them that’s even better.

[seabreezegirl in reply to KittyJ]

Biological meds are compleatly differant they work to calm the immune system down for we people with autoimmune disorder . ( Predisone also does ofcorse and is inexpensive . )

I think this has more to do with expense than anything your National Healthcare does not want to spend the money so they are discouraging people from using these newer meds .

They slow down damage of the joints nothing else is going to do that !!

[KittyJ in reply to seabreezegirl]

Strange then that I was given dmards for that exactly and they did stop damage to my joints not just slow it down 🤔 Can you put up a link to show where you are getting this information from that they don’t please?

[AgedCrone in reply to seabreezegirl]

That is not how the case is put by the clinicians in the U.K.

Patient are 99% started on DMards,& only need to progress to Biologics if the DM doesn’t control their disease sufficiently.I don’t know the figures, but I would guess there are many people who remain on demands possibly forever. It took me 16 years before I needed to progress to biologic drugs…havin experienced little joint damage on DMards. .Thankfully Rituximab infusions are now controlling my disease so well, I now only need one infusion per year.

After all…Biologics are reasonably new drugs (yes they were licensed in the US before the UK) & as I said many people did very well on them with well controlled damage & pain.

[helixhelix in reply to seabreezegirl]

Research has shown that the triple therapy cocktail of traditional DMARDs can be just as effective as biologics. For those prone to infections they can actually have better results sticking to the conventional drugs, especially older people.

[seabreezegirl in reply to bpeal1]

I am an RN .You do not usnderstand HOW this class of meds works within the body to say somthing like that . They are used often nowdays in US,A and people are getting very good relief . And they slow down the progression and damage to joints of the body greatly .

[bpeal1 in reply to seabreezegirl]

I’m not saying biologics don’t work! I think we all agree that they work well. However, what I’m saying is for many people standard DMARDs (like methotrexate, leflunomide, etc.) also work well to slow down progression and prevent damage to joints. Why would you put yourself through the increased infection risks from biologics if standard DMARDs will control your disease activity?

[helixhelix in reply to seabreezegirl]

Well not sure you understand how they work either to say something like that. Biologics do not “work to calm the immune system down”, they are precisely targeted on specific cellular reactions to block that inflammatory process.

[AgedCrone in reply to seabreezegirl]

Actually many of us on here in England are ex nurses & having had RA for many years we actually do understand exactly HOW our drugs work.

We have not only Rheumatology Consultants who treat us, but also nurses who specialise in rheumatology…..who discuss the drugs we are given……we are much more involved than you seem to understand…..we don’t remain in ignorance.

[Hopeful1]

Hi Colaba. I have had RA 10 years. One of the many fortunate ones. Well controlled. No flares. With hospital approval take magnesium to control leg cramps. also some suggest bananas for potassium similarly.

[AgedCrone]

I would suggest you thank your lucky stars you are as able to live what sounds a jolly good life for 80+ even for someone without RA…so stop looking at worst case scenario.

I’m over 80 & 20 + years diagnosed & have never anticipated the downside of flares or any other hiccup RA throws at us.

So get on with living ….if you are unfortunate & get a flare speak to your rheumatologist or rheumy nurse if you have one,& you will come through ….like we all do.

[Runrig01]

I’m 58yrs old, and what I would give to be in your position. I have ankylosing spondylitis and have several fused areas including ribs, which has left me breathless easily and lung complications. I also have several joints partially dislocated due to tendons calcifying, which restricts my mobility. 6yrs ago I had a severe stroke due to an adrenal crisis, which left me with memory issues. I refuse to worry about what’s ahead, and live for today, tomorrow is not promised to anyone. It sounds like you are more fortunate than many of your age, especially as you’re still sable to drive long distances. I agree with others, stop worrying about what lies ahead and enjoy life. Stress itself is a trigger for flares, so it’s not worth stressing. Although lots aren’t having the same contact with their rheumatologists, they are still there. They are swamped in new referrals that accumulated through the pandemic, and are focusing on getting them seen and diagnosed. They assume if they don’t hear from you you’re doing fine. My experience has been good, whenever I’ve phoned for advice, I’ve generally been given a face to face appointment to try and resolve the issue. If you need to speak with them, phone them, otherwise they assume all is well.

[Bookworm55]

I’ve read a number of articles that define the onset of RA after the age of 60 as ‘late onset RA’ . This seems to say that the symptoms of the disease at this stage of life are often milder and/or progress more slowly. I developed RA symptoms at the age of 60 -7 years ago - and until last year at least was able to do most of the activities I did before.

This last 18 months has been more difficult however and I’m now struggling to find a medication that really helps me.

Still, as you say, some aches and pains can be put down to getting older so that is in the mix too.

However I do feel that in RA terms us ‘oldies’ can be seen as more fortunate than others who developed RA at a younger age. In this feed today there are mentions of 2 teenagers with jia and in my own family my niece developed RA at the age of 19. It is a very different prospect for them going forward with a chronic and (at the moment) incurable disease….

[KittyJ in reply to Bookworm55]

But a much better prospect than 30 years ago (when I was diagnosed in my twenties) now there are much better drugs that are being given much earlier. Still a horrible disease to get young though 😔

[AgedCrone in reply to Bookworm55]

Yes oldies,in fact everyone ……are definitely more fortunate to be diagnosed in the 21st century.

I was diagnosed at the end of the last century, and since having read the info & case histories on this forum, I can see how much faster RA research has progressed this century..for all ages.

But I do agree we who are diagnosed in the later years are so much more fortunate than the young people diagnosed in their late teens, early 20s or even earlier. At least we had a good few pain & drug free years to enjoy life.

But of course the good news is that people diagnosed now have a far greater choice of medication to control the disease. But sadly, in the UK, there are just too few Rheumatologists to treat the newly diagnosed.

But tbh there are worse diseases to have …so we all have to manage our RA hoping that the drug that is working for us now…..just keeps on working.

[Kags1068 in reply to Bookworm55]

That's a very good point raised by Kitty. I was diagnosed 41 years ago just after turning 14. I'd had symptoms for several months beforehand. There were only about 3 DMARD drugs readily available (2 of which are no longer used partly due to serious side effects), before you went onto steroids for life (as it was then). Not even MTX was available back in 1982. Things probably hadn't advanced too much by the time Kitty was diagnosed either. As she rightly says, there's so many more drugs now that are often much better, and given earlier. Not that I would wish anyone to get it young, obviously, (or older for that matter)! 🙂

[stbernhard]

Hi Colaba, you get a lot of sound information on thi forum, but for information about every aspect of living with RA I recommend that you take time and visit the National Rheumatoid Arthritis Society/NRAS website. There you'll find answers for most of your questions and a plethora of helpful self management tools. Their help line can always guide you if you can't find what you are looking for. All the best.

[helixhelix]

My RA team is me and my rheumy! No-one else as a very different system here in France. If some other medical speciality is needed she will refer me to it. Since I’ve always felt that one should take responsibility for one’s own health as far as possible that suits me fine.

I’m now in year 14 of life after RA, and my RA is well controlled. I did have a very bad year last year as I picked up a viral infection (not covid), and end result was a year before the managed to get drugs to work again. But I wouldn’t call that a flare as there was a specific trigger. Apart from that if I overdo things and get too physically tired/stressed then my joints will react. But I don’t really call that a flare either as again there’s a trigger.

So in 14 years not sure I have had a flare since the disease was controlled after first year.

I do have other problems of osteoarthritis, also calcification and tendonitis which people with RA are more prone to. But not a clear causal link. They are much more problematic than the RA now!

So I would say recognise that you are getting older and look after yourself as much as you can. But do not anticipate problems, as you might have none.

[medway-lady]

I know Quiberon and Carnac very well , life is what you make it really. So the boat goes but you can hire a local one unless your talking of the ocean going catamarans and I’d guess your not early 20’s blonde, rich and hunky.lol Stay positive and enjoy the cottage. Xxx