Help: I'm 32 is there anyone else this age with RA?? I... - NRAS

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Emmalouise261 profile image
34 Replies

I'm 32 is there anyone else this age with RA?? I'm scared and in pain. Consultant wants xray of chest more bloods an injection of steroids and start on methotrexate. Please can any one advice me on anything please x

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Emmalouise261
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34 Replies
Triple07 profile image
Triple07

I was diagnosed at 30. Iv just turned 34. It was a lot to get my head around with work and kids to think about too.

After a bit of trial and error with the medication i am very well. Take it easy and give your body (and mind!) time to adjust to what will be the new you.

Chances are what you are going through now is the worst it might be, as u are uncontrolled just now x

FunBalloon profile image
FunBalloon

Hi I'm 25 and diagnosed at 20. There are a few "younger" people here so please don't feel like you are the only one. It's always a bit overwhelming to begin with and lots of information in a short period of time. Definitely have a look at the nras website to read up of an the ins and outs of this disease. I also started on methotrexate and I've been doing the injections since then. Mtx has definitely helped me and has reduced my pain significantly. I added another drug last year but before that I was doing well on mtx alone. It take a few months for it to work. So unfortunately you'll have to be patient but worth it for sure x

I was diagnosed at 25 I'm now older. I have a friend that was 12.

Were here for you.

Like others have said nras is great, also Arthritis Care.

The xrays are to get a baseline of how your joints are right at the beginning of treatment.

Bloods too, baseline and to monitor inflammation.

Methotrexate is a widely used drug for RA and other types of Arthritis.

You will need regular bloods whilst on it to see if it's working and make sure your body is OK with it. All routine.

Take care Kiki

Lolabridge profile image
Lolabridge

Hi Emma Louise

Some of us may be rather older than you but many are very young at heart and refusing to behave according to our age!

I hope you will discover there are very knowledgeable people who use this site and can offer you a wealth of experience and sympathetic advice and help to support you through your RA journey.

The steroid injection should ease the pain for you whilst the methotrexate you take begins to take effect. Do also try to rest and relax (easier said than done I know) because it really will help.

Pippy25 profile image
Pippy25

I was 37 when I was diagnosed and while I had insight into RD as my mum was 28 when she was diagnosed it was still a lot to get my head around. I'm much older now and I think when you are initially told you go into a sort of shock and things may feel a little fuzzy in respect of what you are being told, what's happening to me and why is my body doing this, how will I cope...lots of things whirring around in your head and it all feels scary too. Please don't feel that you are on your own as this forum has people of all ages, from different walks of life and life experiences and what we all share in common is RD and we 'get it', as we may be going through the same, we may have had the same and we can empathise, support and share our experiences which can help you feel you are not alone and when others who don't understand what you are going through we do. I don't know if you are already doing this but might it be helpful to write some questions down to ask your consultant that you are unclear about, worried about or are not sure about. Again it might be helpful to keep a diary of how you are so that you can give the consultant information about how it is affecting you on a day to day basis. Again it may be helpful to read information from good and reliable sources about RD, the NRAS have information and booklets on their site and also they have a helpline if you need to ask any questions. I'm so sorry to hear you are in pain and things feel scary too, Take care and I'm glad you have reached out and made contact on this forum. Kind Wishes for you.

Emmalouise261 profile image
Emmalouise261 in reply to Pippy25

Thank you for your advice I will definitely look into it alot more. At the moment my arms are spasming alot and causing alot of pain and keeping me awake in which I dont do much with my children in the day time because I'm so tired xx

Pippy25 profile image
Pippy25 in reply to Emmalouise261

There's lots of information out there, but I would get it from more reliable sources. I'm sorry it is affecting your arms and is keeping you awake. Pain, stress,fatigue and anxiety can be a vicious cycle. In the past I found a few courses on pain management and living with a long term health condition which were run by NHS and Arthritis UK at the time. So wonder if there is something similar now (or on line with this pandemic) that may help. There are people on this forum who have children who I am sure will be able to share their experiences or offer support. I know growing up as a child with a mum who had RD, mum was mum and I never saw her as anything other than my mum.

Eiram50 profile image
Eiram50 in reply to Pippy25

Good advice, pippy.

Boxerlady profile image
Boxerlady

Hi Emmalouise. Hopefully you'll feel less alone now that you've found us 😘

I'm older than you but was diagnosed just over a year ago and had a similar experience at my first appointment. I was sent for a chest x-ray and extra blood tests (to get baseline readings and check that it was OK to start the various medications, I think) and then had a steroid injection (which really helped) to tide me over while the Methotrexate started to work. Hopefully you'll get a phone number for the nurse helpline; they're really helpful and great when you have questions/need reassurance.

Keep posting - we're here to laugh and cry with you and just to listen if you need to unload 💐

I’m 36, diagnosed at the start of this year with another type of inflammatory arthritis, having probably had active disease since my late teens and spent the last 10 years back and forth to the medics trying to get them to take my joint issues seriously. People wrongly think of arthritis as somehow being an older person’s disease when it’s really not, many people are diagnosed with an inflammatory arthritis between the ages of 20 and 40, and it can effect even very young children as juvenile idiopathic arthritis (JIA). I got chatting to a much older gent on the train purely because we were both sat massaging our sore hands in that particular way most people with arthritis tend to, and he told me he was diagnosed almost 50 years ago when he was in his early 30s.

As others have said, NRAS are probably the best source of information to start with. Whilst it may have been a shock, being diagnosed is actually a very good thing: with appropriate treatment, many people go into remission, and medication also means that you’re reducing the long term damage to your joints. Had I been diagnosed with my first major flare a decade ago, instead of the 9 joints involved now, I might have still only had a couple effected. The only downside is these meds take a while to work, and there can be a lot of trial and error to get the right one(s) for you, but you’ll get there. As I was told just a few short weeks ago, it also pays to remember that aside from those lovely people who hang around to pass on their years of experience and wisdom, many of us here are either new diagnoses trying to find our feet or people that aren’t having a great time with their arthritis or treatment. There are thousands of other people out there with arthritis whose disease is well controlled and are just living their lives.

*Edited to add that I’m also a single dad, and there are plenty of us on here with arthritis that are parents, so we know how difficult it can be with pain, fatigue and children.

Tree6 profile image
Tree6

I was diagnosed with JIA, a kind of ‘kids version’ of RA, aged 18 months. I still have it now aged 43 though it is currently well controlled with medication. I’ve had many bad patches and flare ups over the years but always got through them. Steroid injections often help and I also take sulfasalazine and hydroxycloroquine. Make sure you really take care of yourself, get enough rest and eat good food. Ice packs, warm baths, gentle exercise can also make you feel a little better when in pain. Hope you feel better soon x

JulezH profile image
JulezH

Hiya, diagnosed with RA at 30 and am now 34. Echoing what a lot of people have said here about feeling like a bit of a guinea pig for a while to find the right medication. I would say make sure you stick to what your Rheumy team tell you and if they tell you to take some meds do some research and take them - swollen finger joints are the worst!

Lisamac7414 profile image
Lisamac7414

Hi Emmalouise261

Sorry to hear you are struggling, I was 31 when I got diagnosed. I am now 46 so just a little older now! It is very confusing and scary time when you first get diagnosed, especially when you are told the worst case scenario and you are in so much pain. I left my doctors office thinking I would be in a wheelchair within a couple of years, my chance of children gone, and my life gone! Everything is thrown at you all at once, try not to panic! There is going to be some hard times ahead with trying to find the right meds that suit you. Don't give up and read as much about R.A. as you can so you are learning more about the disease. Your life is not over because you have R.A. you just have to adjust a few things. Trial and error with meds is quite common when first diagnosed, just try and make sure you tell your doctors everything! Get yourself a diary and write down every symptom and pain you get, that way you will see a pattern and be able to tell if meds are working or not.

Good luck and remember you are not alone and you are not the only one going through this, there are soo many lovely people on this site always willing to chat.

Take care and keep us updated

Lisa

Sheila_G profile image
Sheila_G

I really feel for you. It is very scary especially when you are young. You will get some good help and advise on how to cope, from other young people in the group. Good advice from Triple07. Try not to be so anxious. There are lots of people to help you. Follow the advice of your Rheumatologist and take your medication regularly. Good luck. x

Melirm profile image
Melirm

Hi Emmalouse, I hope your not feeling to bad today. As you can see here there are a lot of people, and younger people, that are suffering with R.A. I was diagnosed with R.A. overlap at 32, I had a 5 year old son and was working in a high stress job at the time. It was when I realised how tired I was and that I spent all weekend getting ready to go back to work that a friend encouraged me to go to the Dr and I was eventually diagnosed and started treatment on Methotrexate and it did help, not 100% but definitely helped. Eventually I tried various other drugs and have now settled on MMF which had been life changer for me. It took time but I have been in free from the effects of R.A. for a Long time, although it does still keep me on my toes with occasional flares.

It is a massive thing to take on board and at the time your diagnosed it seems not to have a end, but we are amongst some of the most adaptable creatures and we find way. It’s easy for me to say try not to worry about things when your Tired and in pain. Diagnosis is the start of a new beginning. Take your time to sort through all the information and take each day as it comes. If you can take a little extra time for yourself (not easy if you have kids I know). Good luck and all my best wishes x

Kalimers65 profile image
Kalimers65 in reply to Melirm

What is MMF?

Melirm profile image
Melirm in reply to Kalimers65

Mycrophenilate Mofitil also known as Cellcept, it’s a drug used widely post transplant to dampen the immune system, but is used with autoimmune conditions as well. It works amazingly for me.

Kalimers65 profile image
Kalimers65 in reply to Melirm

Gosh I’ve never heard of it. Are you in the U.K. ?

Melirm profile image
Melirm in reply to Kalimers65

Hi, yes I live just outside London.

dippyd09 profile image
dippyd09

Hi, I was diagnosed with R.A. at 30, it took a little while to get the drugs right but eventually we got there. It’s a lot to digest especially when you aren’t felling too great especially when you have children but try to make time to rest. When I was diagnosed methotrexate wasn’t the first treatment to be offered (it’s 30 years ago) but I have now been taking it for 20 years. It takes a little time to get the dose right for you but try to bear with it. Take care and hope you get it sorted out soon x

Monkeysmum profile image
Monkeysmum

Hi Emmalouise261. Sorry you’ve had to join us. I was just a few years older than you when diagnosed and remember well those feelings of being scared and overwhelmed. This is absolutely the worst time as you are not yet on any meds and it will take a while for your body (and mind) to adjust. As you may guess from my name, I am also Mum to two little monkeys, now 8 and 12, but they were 4 and 8 when I first started having symptoms. As others have said it is difficult to manage the pain and fatigue whilst also looking after children, but at the same time they are my motivation to keep trying, if that makes sense?

Anyway, please feel free to come here and share your fears and worries, there are many that will support you and the knowledge amongst this bunch is just amazing, much better than Dr. Google!

Sending a big hug.

Emseykins profile image
Emseykins

Hi Emmalouise, I'm 35 and also called Emma! I was diagnosed last summer after years of avoiding dealing with my illness. Im just on hydroxychloroquine at the moment but my consultant wants me to be on more medication. I dont know anyone else with this disease and feel very isolated and overwhelmed. If you (or anyone else who reads this) would like to chat please do get in touch, supporting each other is a lifeline for us 🙂

bienassis profile image
bienassis

I feel for you - but just let me say that you are diagnosed at a time when so much can be done for this wretched disease. You are on the right path; and if one path fails there are others. Like you, I was diagnosed at 32, but that was in 1967. Once I started on a DMARD in 1988 it was magical; 10 years later I started methotrexate and am still taking it 22 years later.

Please try to relax a bit (so easy to say) and always remember you will have a backup team of specialists to help. Good Luck; keep well.

fredsmummy profile image
fredsmummy

Hello! 38 here and first appointment with rheumatologist Friday so I’m exactly where you are! Overwhelmed and scared and have 2 little ones, One autistic. This is a great spot, I would of felt alit worse if I hadn’t found it. Lots of people for support and I’m

Hoping I can do the same .

Zoe x

Leades profile image
Leades

Hello Emmalouise, I am 30 and got diagnosed in February of this year. I totally understand how you feel, it is quite overwhelming at the start. I will echo what a lot of people here are saying: make sure you communicate all your symptoms and how you feel with your rheumatology team as they are there to help you and get you through this. I have had to stop methotrexate after two attempts due to side effects and other health issues, but my rheumatology team is really good and despite the fact I currently have no treatment, they are really trying hard to help and support me.

Give us a shout if you have any question.

LJS13 profile image
LJS13 in reply to Leades

We have similar situations. I’ve just had to stop methotrexate for the 2nd time . I’m waiting to see the consultant to go on Etanercept

Leades profile image
Leades in reply to LJS13

Ooh how long did you take methotrexate for? It’s so good that your consultant are thinking about the biological route already.

rebeladytn profile image
rebeladytn

Honey, I'll be 47 in September and I was finally HEARD by a Rheumatologist 15 years ago. My RA doesn't show in my blood work either.

I went on A BUNCH of meds and Plaquenil worked pretty good for me but now I'm on Humira and it changed my life. (But I've noticed my teeth have become sensitive to cold and brittle. Idk what's up with that).

So sorry to hear how you are suffering. RA can strike at pretty much any age, but the treatment is the same for us all and what your consultant has ordered is absolutely standard. If it helps, I can tell you, as someone over twice your age, that things will improve for you. My RA started around my 70th birthday, but I was in remission a bit before my next birthday, so stay hopeful and remember your youth is on your side. Sending you good wishes.

LJS13 profile image
LJS13

Hi Emma

I’m 33 got diagnosed 22 at the moment my RA still isn’t under control . My advice to you is do as much research as you can . This group is brilliant. I know it is scary we are all here if you need to talk 🙂 I’m suffering bad at the moment everything seems like an effort. I’m awaiting to see the consultant. Hoped the steroids will help they always help me

Claire32 profile image
Claire32

Hi

I was 32 too when I was first diagnosed although I suspect I had RA before as when I look back I’ve struggled with fatigue and joint pain for a while ...thought I had glandular fever in my twenties.

I’m 40 now and just had my second baby.

I was really scared when I was first diagnosed and googled lots of things on the internet even though I was told not too. There’s lots of treatment options available now...the aim is to get the RA under control so you can live your life.

Once I got my RA under control I did really well working, going to the gym, busy family life etc. I’ve found myself using this forum again (which I love) as I’ve just had a baby and have been in an awful flare and Just had to change medication.

I’ve been where you are so totally understand how you must be feeling. Your in the worst bit now. Things will get better. It can take a little while to find the right mix of medications but once you do you will feel better. Thinking of you

xxx

NW666 profile image
NW666

Hi I have had Arthritis for 27 years, got it when I was 20, I hope this helps....The X-ray is to make sure you don’t have any type of lung infections because all RA drugs suppress your immune system to nothing, the bloods they look for is ESR and CRP levels that’s to show the amount of active disease (if you get a copy of your results) on Metho you must have blood test monthly to make sure you’re body is coping

Having said all these scary things, go with it, because the pain/fatigue is awful and I’m sure you want some relief

, a lot of RA drugs are a trial and error process, and just for good measure they all take at least 3 months to work

Personally I have been on most options over the years, they work and then wear off but then I do get offered new ones, RA is so different for everyone it’s hard to get a winning formula, but my RA consultant is awesome, ask questions they will be ok with that.

Don’t lose faith, try to live as best you can and sod those who don’t understand, my family are the only ones who get it.

Hope that helps and doesn’t freak you out!! N

Beth72 profile image
Beth72

I was diagnosed at 16 and I’m 48 tomorrow still in pain and Iv had a complete knee replacement!started on my new med today 🤞crossed they work

crashdoll profile image
crashdoll

Hi and welcome Emma. Sorry you had to find us but I think you’ll find a lot of support and information here. I was diagnosed at 21 and I’m now 32. It’s been a rollercoaster of emotions but I’ve lived a good life and done all the things I wanted to; went to university, changed career, travelled, learned to drive and achieved everything I told myself and I could. That said, it’s ok to have bad days, sad days and angry days. You’re going to feel all sort of emotions and it’s ok to feel this way. Don’t be alone, talk to your family and friends and know we are here if you need a friendly ear. Take care.

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