Rheumatoid Arthritis: Hi my son has been diagnosed at... - NRAS

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Rheumatoid Arthritis

Fogster22 profile image

Hi my son has been diagnosed at age 26, he’s in the process of blood tests and waiting for his first treatment, I’m utterly heartbroken seeing him in so much pain every day struggling to do the tasks he took for granted. It’s literally come on within six months. Can anyone give me any glimmers of hope that they will find something to control it for him 🥲🥲

52 Replies

Hi Forster (& son),

It will get better once the correct med is sorted out for him!

Most people go on methotrexate (MTX) initially and it works for a lot of us..... my only med for nearly 7 years and probably would still be if a bout of COVID hadn’t cranked my RA up, hey ho it’ll settle again once I’ve got the right treatment sorted for this.

I teach special needs youngsters in a special school and continue to do so 4 days a week... if he’s a builder then a change of job may be needed but hopefully not!

There are a couple of tricks to making the DMARDS (disease modifying anti rheumatic drugs) manageable.... drink loads of water throughout the week and build up slowly to the required dose if possible.

If you type in ‘Newly diagnosed’ in the NRAS search space on the right of this page you will find posts which have lots of additional info in.

I’ve got to shoot off to work right now but will pop back later and add some more specifics if needed but there’s loads on here who will support you both through this by replying to this post and the NRAS support phone-line is very helpful.

arthursplace.co.uk/ Check this one out as well 🙃

All the best

Ali

When his meds are sorted out he will be able to function. It will take a few months before he will feel the benefit of the drugs as they take a few months to kick in. I a sorry he has got this awful disease. xxxxx

The good news is that there are lots of brilliant medications available now and more are being developed all the time. It will take time for them to kick in and he might need to try a few to get the right one/combination for him but once that happens things will hopefully be fine.The best advice I was given at the beginning (2019) was not to Google too much, stick to reputable sites (e.g. NRAS, Versus Arthritis) and not to read anything older than 5 years because of the speed of development of therapies. This is a great place for advice and support but remember that many on here are posting when they're struggling and many more people are just well and getting on with their lives.

Thank you very much for your replies that’s made me a little easier. He’s taking part in clinical trials with him being so young and having what started as palindromic turning into full blown rheumatoid affecting all joints every day so quickly. You don’t appreciate what it is until you come across it, it’s certainly not just a few aching joints🥲Thanks again xx

Deeb1764 profile image
Deeb1764 in reply to Fogster22

There are also sites for younger people ie in their 20s with RA as well I will see if I can remember it . think its a Facebook page which also helps to show younger people living and coping with it too. Speaking to NRAS helpline is also a help too if worried about any aspect.

Fogster22 profile image
Fogster22 in reply to Deeb1764

Thank you 🙂

I’m sorry to hear your son has this disease at a young age. But as others have said there are many drugs available to help get it under control.

The main NRAS website is full of helpful information and there is a telephone helpline too.

Eating healthily may also help and NRAS recommend a Mediterranean style diet with lots of fruit and vegetables and quality protein. Avoiding highly processed foods and preparing meals from scratch improves gut health and there is growing evidence that this too is beneficial.

I hope your son quickly finds the best drug for him to get his RA under control so that he can get on with his life.

Fogster22 profile image
Fogster22 in reply to Lolabridge

Thank you 😊

Hello, I’m very sorry to hear this. Yes, there are glimmers of hope .. bright lights of hope too! The early days of RA are awful indeed for many people waiting to be diagnosed and then uncertain of so many things. It does take a bit of time to get steady on the RA med(s) and that waiting time is difficult, especially the first few months.

My saviour was my Physiotherapist at hospital. Early on with my RA I went regularly 2-3 times a week as my hospital is only 1.5 miles away, and had a lot of great advice from him. He was an expert on rheumatoid joints so gave me exercises at the hospital gym and to do at home and signed me up for hydrotherapy classes with him and a small group of other RA patients every week for several months. Yes, getting there to the local hydro pool was an effort, but the benefits were immense, so that’s something to think about asking the rheumatologist if he is able to do. The exercises were always “doable” and nothing to hurt inflamed/stiff joints. I hope your son is soon making some progress and feeling improved. You are obviously giving him great support. 💗

Thank you for that it’s much appreciated x

All conditions that affect our otherwise normal health are devastating but not always hopeless ! in time the aim is remission and apart from taking some medication most days or weeks or even monthly he will lead a normal life. There are so many truly awful diseases and RA at least does have some very good medications that work for the majority of people. Some do have side effects sometimes fleeting, other times the side effects are too much and a medication is changed. Because there is no one size fits all medication its does time to find the one or ones which will work for him. So don't be too dismayed and do look up the NRAS website for some very helpful information on life with RA, it's medications and other treatments. Also it might be helpful to find your local RA group as they may be holding meetings so you can actually talk to people living with the disease sometimes for many years.

Thank you very much x

Support him but be optimistic….don’t dwell on the what ifs …..it will take time to come to terms with….so be patient……..many here have had RA for many many years & still lead a good life,& hold down jobs.Yes there are people who don’t make good progress..but often they had other medical conditions before developing RA.

There are so many successful drugs available these days & as long as he accepts his doctor’s advice & sticks with his prescribed medication……& hardest of all…..tries to ignore all the well meaning advice from people who don’t even know what .RA is..,.,he will be fine.

Fogster22 profile image
Fogster22 in reply to AgedCrone

Thank you 😊

Hiya Fogster. What a lovely Mum you have, concerned for you as well sh pe would be just now. As others have eluded to this should be the worst you'll feel, unmedicated RD is the most awful bone grinding pain, we understand that. Apart from possible occasional flares once you have the right meds you should be able to get back to most of the things you like doing. Maybe you'll need to make some amendments but controlling RD & protecting those joints & vital organs is the priority.

I just wanted to welcome you & your Mum (thanks for writing on his behalf) & add that once you've started your meds & start responding to them everything should become more manageable. Maybe as a family it would help to have a read through the NRAS site nras.org.uk or there is a helpline, free on landlines 0800 298 7650 open Mon-Fri, 9.30am - 4.30pm. Please if you do Google anything make sure they are reputable or dedicated sites otherwise you'll scare the pants off yourself, not needed just now! No different to anything else there's a lot of misinformation out there, & why I’m glad your Mum has written on your behalf, here we are able to share our experiences with you. We do have some younger members like yourself & we do have males too though they are spread more thinly as RD tends to affect females more. There are those who's diagnosis has changed too, it is known to. I’m sure anyone who can relate will be along to give their support.

Mum… is he taking anything for the pain? If not see if his GP can prescribe something for that & the inflammation too. If he's offered corticosteroids (steroids such as prednisolone) he's best avoiding them until his bloods are complete, had any imaging & he's examined as they can dampen down things too much. Once diagnosed & meds started he may be prescribed them as a bridging med until his DMARD takes effect. Over the counter meds such as paracetamol & an anti inflammatory such as ibuprofen may help otherwise. Just be sure he stops taking them a few days prior to his appointment, or imaging, as they need to clear in time to show the inflammation at it's best (or worst!). This is what my GP did, prescribed pain relief & an NSAID with those instructions. Cold or heat may also give some relief on the affected joints.

I hope in time you'll join in but in the meantime thanks Fogster's Mum for joining, talking to people with the condition can be so helpful, many of us here have been so thankful for that. Just talking with those who understand better than anyone, just get it, is a blessing. However good your Rheumy will be he likely has never experienced the pain, he doesn't have it! 😊

NB we do use acronyms here quite a lot so this might help healthunlocked.com/nras/pos...

Thanks for the detailed response much appreciated 😊

As many have said there are now lots of meds that work, but it may take a few months before they fully kick in. In the meantime, ask your rheumatologist whether a steroid injection might help to relieve the symptoms.

Fogster22 profile image
Fogster22 in reply to KeenGreen

Thank you 😊

A couple of pointers.... ask for referrals early and be proactive re this.

Podiatrist to support with foot health, they will refer onto orthotics who will make insoles to ease problems with this (mine are worth their weight in gold and definitely help).

Occupational health will advise re hand and fingers and provide splints if thought helpful (I rarely use mine but the advice re turning things on and off in a way that protects the thumb joint much appreciated.

Physiotherapist as mentioned in an above reply!

Let the dentist know about meds ASAP and if they deem it necessary can prescribe a toothpaste called Duraphat which may help protect teeth (will have to pay for this alas as not on NHS list)

If having to pay for prescriptions get a prepaid prescription card. see....

nhs.uk/nhs-services/prescri...

Be aware of need for suncream in the summer as most DMARDS makes us sun sensitive.

Get a vitamin D blood test as most of us are deficient in this and a supplement will sort it!

If I think of anything else I will add it!!!

All the best

Ali

Fogster22 profile image
Fogster22 in reply to Ali_H

Aw thanks very much that’s great x

HI there, I can understand your pain and worry about your kid. All I can tell you is to hang in there. You already have a diagnosis , so you are on right path. Once he finds a Med that works he will be back to his normal pre RA life. Most people do as there are literally 100's of options and new ones coming every day.I have a neighbor who I have known for almost 23 years, she started RA in young age around mid 20's. She is now touching 50 and doing pretty good. She went through few meds over the period but now has settled onto just HCQ and living very normal life.

Good luck to your son and you. Hope things works out for him soon. Take care.

Fogster22 profile image
Fogster22 in reply to ketiv74

Thanks very much for that it’s appreciated and makes me feel a whole lot better x

Hi, I was diagnosed with Stills Disease an AI illness that’s manifests as RA. I was diagnosed aged 17 and I’m now 59. I’ve been drug free since my mid 20s apart from pain relief when needed. I have 2 adults sons, have always worked, gone to the gym, travelled and been active. Once meds are sorted it’s possible to live a normal life taking just a little more care. So don’t despair.

Thank you 😊

I hope you have been reassured reading all these comments that’s it’s not a disaster.

Better days will come Fogster22 and your son will still be able to do things but just do them differently. He'll learn to pace himself, and though I can't deny there will be issues on some days, there are wide variety of treatments that can help him cope. Make use the NRAS books and leaflets, use your rhuematology team for support and guidance as well. He'll get there.

Fogster22 profile image
Fogster22 in reply to madme1

Thank you 😊

So sorry to hear about your son but there is hope, the doctors will prob put him on methotrexate and maybe give him steroid injections initially, however from the start ask about biologicals, I am on amraldi biological injection twice fortnightly and 12 mg of methotrexate weekly. This combination changed my life completely. From being in agony while working (I teach yoga & PT) I know hv zero pain, enjoy the gym, daily runs and back to walking in the mountains. They don’t offer Biological’s initially but show an interest in them. It took 5 months for me to start on them, my rheumatoid nurse was fantastic. These drugs changed my quality of life immediately I started to take them. Good luck for your son and tell him there is REAL hope to lead a normal pain free life. Good luck 🤞

Fogster22 profile image
Fogster22 in reply to Ros23

Thanks so much 😊

My son was diagnosed at the same age. It was truly awful to see. He spent quite a while in denial despite the fact the impact it was having on him and his life and then more time trying different treatment before going on to a biologic. It was like a miracle- all the symptoms disappeared almost overnight. 3 years on he is married and a father with no limitations to his life. I know it’s not the same for everyone but I hope this gives you some grounds for optimism. All best wishes. Xx

Fogster22 profile image
Fogster22 in reply to Dash21

Appreciate that thank you 😊

Yes. Things will improve. It does take a while, sometimes to get the medication right for you but once that is sorted he should start to feel better. Have been on methotrexate for several years and it has made a huge difference. No pain or stiffness. Hope he soon feels better.

Fogster22 profile image
Fogster22 in reply to Jutsum

Thank you very much 😊

He'll feel much better when he gets the right meds Fogster. Such a young age. Try slowly changing his diet as well. Stop eating red meats and tomatoes, drink a couple of litres of water throughout the day. I also found eating pineapple and papya weekly helps alot.I also take B12 and omega 3 supplements.

The meds take a while to take effect but he will notice the difference as the weeks go by.

Hope it works out ok for him and he gets the relief he needs.

Thank you 😊

Hi! I was diagnosed with RA when I was 22 completely out of the blue (one day I was fine, within a week I couldn't walk ect) and I'm now 28, it was really hard and I felt like none of my friends understood what was going on and with it being so sudden I felt like my independence was robbed from me for a long time.

The first bit is always the worst until you get on the right meds, but just being there for him and supporting him will go a long way!! Which I'm sure you already are doing as you sound like a wonderful mother! Support groups also helped a lot via Facebook, here and the Rheumabuddy app :)

It really does get better! Xxxx

Thank you 😊

Sorry to hear about your sons diagnosis, it does come as a shock to the one witht the condition and loved ones round him.Lots hear are kind and helpful.

My take is as one with the condition you can go through a sort of grief for life pre RA,

so be prepared for that.

It's helpful if ones like you are positive about what he can do, and while adjusting letting him know days when he struggles with RA, pain, and while new meds settle in his system, he's doing well.

Not sure what work or interests he has but some adjustment may be good.

Encourage your son to use his RA team, especially the RA nurse they know about care plans.

It's important he doesn't struggle on , but rather call the advice line for support and solutions.

The pain is debillitating so sooner it's controlled the better his life with RA will be.

This site is helpful too

versusarthritis.org/about-a...

Fogster22 profile image
Fogster22 in reply to Happy5

Thank you 😊

Oh bless you. It is heartbreaking to see your children in pain. My heart goes out to you. As others have said he will be much better when he gets on his medication and they sort him out with the right one. Sending hugs to you both. x

Fogster22 profile image
Fogster22 in reply to Sheila_G

Thanks so much x

Welcome to the group I hope you get some useful information for your son. Try and get him to join us as he can then get the support and advice from others who have been in the same situation. I too was diagnosed when I was 26, there are lots of treatments out there for RA so he has every chance of seeing a great improvement in his symptoms but do bear in mind they can take a while to start working, so pain relief and maybe steroid injections/tablets may be offered to tide him over until they do work. Make sure he lets his team know how he is doing on treatments as they will assume all is ok unless you contact them. The NRAS and Versus Arthritis website will have lots of info for him and you to read through that will hopefully help.

The early part after diagnosis is very difficult waiting for treatment to work but he won’t be like this forever. I hope he feels able to join us himself soon.

Fogster22 profile image
Fogster22 in reply to KittyJ

Thank you it’s been lovely to get so many positive responses 😊

Looking on the positive side, there are more drugs available to treat RA today than 30-40-50 years ago. Back in the day it was pretty much anti-inflammatories, steroids and Methotrexate (I was dx age 6 in 1971). Hopefully, his rheumatology team will find drugs that help and he will be able to continue doing what he does now, with little interference.

Fogster22 profile image
Fogster22 in reply to BoneyC

Thank you 😊

Once my condition was diagnosed and measured sorted I was fine and still do all the things I used to do, including running, cycling and rowing. Sometimes I do have a flare up but in the 7 years I've been diagnosed I can count them on the fingers of one hand, and a duvet day really helps. I would say having a 'can do' attitude is the key to successful management of RA, as I have 2 friends, the same age as me, 62, who gave up. Both have gained a tremendous amount of weight, feel sorry for themselves and, as a result, do suffer.

Fogster22 profile image
Fogster22 in reply to Knitmare

Thank you 😊

Poor chap….he will be thinking…thats an old person’s condition….like I did. Thankfully will all the medications out there now he should be able to get back to enjoying his life.

Fogster22 profile image
Fogster22 in reply to Evie3

Thank you ☺️

Hi Fogster. Sorry your son’s been diagnosed with RA at such a young age. I was 21 when i was diagnosed. (Turned 50 this year!) I started getting severe, chronic pain in my right big toe, left shoulder & a serious pain in my right eye. I was told i had a very serious eye condition (Iritis). Which came as a package deal. They did a lot of blood tests & xrays. Told me i had a sexually transmitted disease. Chlymidia. (I didn’t sleep around). I had got this awful disease from the FIRST man i ever slept with. What’s scary about this disease is, there were no symptoms. Until i got so ill. I was in hospital for 5 days. I begged to go home & the next day. Every single joint of my body was affected. I had become a 90 yr old over night!! Needed walking sticks & the pain was indescribable. This all sounds awful. But i was diagnosed nearly 30yrs ago!!! The medical world has come a long way since then. I was on alot of very, very serious drugs. Steroids too. I’ve been having treatment for the last 15yrs. An Infliximab infusion every 6 weeks at my local hospital. Without this drug i’m in agony. I cannot walk.

I know it must be so frustrating seeing someone you love struggle like this. But the treatment these days is fantastic. In the meantime just keep supporting your son & you can come on here anytime & let out all your worries & frustration. Good luck to you & your son. X

Fogster22 profile image
Fogster22 in reply to Vixen2

Oh that’s lovely thank you, I really appreciate all the kind messages it really has made me feel a whole lot better. X

How’s your son coping ?

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