Recently diagnosed and panicking: Hello, I was... - NRAS

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Recently diagnosed and panicking

Audrey16
Audrey16
52 Replies

Hello, I was diagnosed with RA on Monday and was told I will have to start medication. I am currently registered blind so I have been handed a diagnosis before and thought I would be able to handle this but I am not. I'm panicking and so scared that I'm going to be physically sick all of my life even on medication and that I'll get cancer or heart and lung issues and that life expectancy is redhced. The rheumatologist didn't mention these to me and the more I look into RA the more I'm terrified. Please could you let me know the likelihood of these issues happening? Will I be physically sick for the rest of my life? Please help

52 Replies
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helixhelix

No! Please don’t panic. For most of us life returns to near normal, and these days there is no significant shortening of lifespan.

A lot of what is on the internet is old and out of day, or comes from alarmist sites that end up scaring the life out of you. Stick to reputable sites like nras.org.uk. Yes, there are a few people who have a bad time, and continue to have a bad time but they are the minority, and tend to be much more present on the internet than those who go into remission and then just get on with their lives.

Getting this diagnosis is a shock, and most of us really struggled with the idea. But really it isn’t the end of your life as you know it now.

So please, please take a deep breathe and stay calm. If you are blind then you are probably a tough person who knows how to overcome challenges, so you’ll manage this one too. Look after yourself, and rest until your treatment kicks in..

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Audrey16
Audrey16
in reply to helixhelix

Thank you so much for the quick response and for letting me know these things. Do most people still get pain and stiffness even while on medication? Is remission common?

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helixhelix
helixhelix
in reply to Audrey16

Medically controlled remission- where you still have to take drugs - is pretty common. Drug free remission is quite rare.

I have morning stiffness for a short while until I have done my exercises. But these days I am rarely in pain, or only when I have done something stupid!

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Audrey16
Audrey16
in reply to helixhelix

Thank you so much

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Eiram50
Eiram50
in reply to Audrey16

Absolutely echo what had been said by HH. And I would add that with the correct treatment, and lifestyle changes ( if required), life may look so much brighter than it was before diagnosis, wherein you may have been in great pain etc.

You’ve found a very supportive place here so keep talking x

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Boxerlady

The best advice I had at the very beginning (only earlier this year for me) was from my lovely GP who told me not to read anything older than 5 years as treatments and outcomes have been revolutionised in recent years. I stuck to websites like this and NHS direct and the pamphlets given to me by the Rheumatology department and that really helped - there's a lot of scaremongering out there and this a time when we're vulnerable.

I'm still having my medication tweaked but I'm already far better than I was and certainly don't feel pessimistic about the future. I've made some adjustments - better diet, more (gentle) exercise, a slightly lighter workload - which has helped me feel proactive and more in control and I'm taking all the advice offered by my Rheumatology team. They're the experts and know much more than the Internet Alarmists (good name, helixhelix 😉) I rested up a lot in the early days and I'm sure that helped too. Try not to panic and take heart from the support you'll find on here.

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Audrey16
Audrey16
in reply to Boxerlady

Ok thank you. Good luck with your medication

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AgedCrone

Hi Audrey....I was diagnosed 20+years ago...had ups & downs with drugs..but nothing I couldn’t cope with...& now live a mostly normal life.

I have been on an IV Biologic for 3 years & have needed no joint surgery, & haven’t developed any permanent side effects from taking many RA drugs.

So please stop scaring yourself reading Dr Google.......or if you insist & think something refers to how you feel...ask you rheumy nurse who will probably sigh & say she wishes Google had never been invented.

It is scary when you are first diagnosed ....but do remember most people on here are sharing problems with how they feel or the drugs they are taking.

Those of us who are are doing OK .....probably the majority, rarely talk about it.

Good luck, I really hope your meds kick in fast.

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Audrey16

Ok thank you for letting me know. These responses encourage me.

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nomoreheels

Hiya Audrey, welcome. It is a big diagnosis to cope with if you’ve otherwise led a pretty healthy life not needing specialist meds. The reason your Rheumy didn’t mention about all you are scared of is because it is not the case anymore with the meds available to them. Google has a lot to answer for & whilst it's natural to want to learn all you can you need to be able to sort out the good from the bad which just isn’t possible without having a little knowledge. Believe me you’re not the first to happen on here having done just the same & frightened themselves silly. Whilst it's true there's no one magic tablet for all & it can take a little patience waiting for the meds to take effect they do work, there are plenty of options as well if they don’t bring you under control sufficiently.

I was diagnosed in 2008 & am pretty well controlled, I believe there's always room for improvement but I've also always aimed high! I've not needed any surgery & the erosions I had were present at diagnosis. I was diagnosed promptly so there was nothing I could have done about that even.

Stick around, ask any questions your Rheumy hasn't answered & we'll help wherever we can. We can only give our experience, we're not medically qualified but will happily share.

Actually, we have another member who'd registered blind, she lives in Canada though not here. I'm sure when she's around she'll welcome you too. 😊

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Audrey16

Thank you so much

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J1707

Don’t panic.. I was diagnosed three and half years ago and for the first two I was much improved this year things not so good but I know with the right treatment things will get better just trial and error with meds. There are so many success stories now. You’ve had some very good advice so far . Things are more positive these days and lots of inflammation on RA is dated. Keep in touch this forum is a God send.

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Audrey16
Audrey16
in reply to J1707

I hope you feel better soon

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Audrey16

Thank you, I really appreciate it

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Deeb2908

Don't panic don't go crazy looking up stuff thathas no relevance to you.

This website is great and you get a dose of realism and thought when answered.

We are all different but just like you I was scared and it is a lot to take in but yes you might need to change a few things and yes you might need a few months to sort meds out (I am month 5 of diagnosis) and yes you will rant and cry but we are here and we all have been there!

There are many positive stories on here too much better than Google

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Audrey16
Audrey16
in reply to Deeb2908

I don't think I can do this. I am so nauseous and I'm scared. Will I be throwing up and have headaches with the medication? What if I don't respond to any medication? Will the disease progress while I keep trying the medication and if I do find the right one will if just be too advanced? I'm sorry I'm so scared and I'm having panic attacks

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Deeb2908
Deeb2908
in reply to Audrey16

Audrey call NRAS in the morning they are fab they will help and let you talk your fears out. One thing I have learnt we are all incredibly resislient on this site and fear of the unknown is big. I do have nausea etc but I now dont have incredible pain in hands or feet if asked I prefer the nausea not the pain!

Sending a virtual hug and post on here whenever feeling lonley or afraid someone will chat too! Keep remebering though we are al different. x

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Audrey16
Audrey16
in reply to Deeb2908

Okay

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Cwendyn
Cwendyn
in reply to Audrey16

What if you don’t throw up? What if you do improve? What if the disease doesn’t progress?

Try and reframe it in your head. Most people are fine and as others have said, are often here if they’re unwell. Thousands of people just go on and live their life. I went out last night and sat next to an 80 year old gentleman that also has RA. He has had it many years. He was telling me about the gardening he does and all of his adventures.

If you’re struggling mentally with it, have CBT to help you. Don’t let this diagnosis ruin your life 💕

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Audrey16

I'm sorry but I'm panicking and I feel like throwing up because I'm scared and I can't eat. What if I don't find the right medication? My rheumotoligist couldn't tell me if I'll be ok. She said that complications and consequences are unknown. Everyone is different but I'm blind and what if I just don't respond and I spend years throwing up because of the medication and progress and eventually get something serious?

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Deeb2908
Deeb2908
in reply to Audrey16

I was in tears today over it all it was a bad day in one way (work related needing to let go of full time work) but then my bloods were good after only 8 weeks of being on MTX!

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Audrey16
Audrey16
in reply to Deeb2908

I'm sorry to hear that. It is not easy at all. I'm glad they were okay

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helixhelix
helixhelix
in reply to Audrey16

Can you try to focus on doing your bit to help yourself? The rheumatologist will be there to support you with drug choices and so on, and you can make a big difference by looking after yourself. Eat properly, rest well, take exercise and try not to stress. That will give you the best chance of meds working well. And stress is a big trigger for RA flares, so maybe try meditation or mindfulness to keep you a bit more relaxed. Concentrate on what you can do, and leave the doctors to fuss about the rest.

We’ve all been where you are now, and we’ve come through it so you will too. No doubt being blind does make you feel more vulnerable, but as far as the RA is concerned it makes no difference.

In over 10 years I’ve not thrown up once!

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Audrey16
Audrey16
in reply to helixhelix

Ok thank you I will try

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KittyJ
KittyJ
in reply to Audrey16

I’m really sorry to hear you are feeling like this Audrey. I hope you are feeling a bit reassured by some of the responses. Yes some of the meds can have side effects but that is the case with all meds so it’s best to try and not focus on the possible side effects as they probably will not happen to you and if they do then there are many other meds to try. You won’t be forced to stay on something that doesn’t agree with you. I’ve had RA for nearly 30 years now and I’ve never thrown up from meds, in fact I’ve only felt nausea on one med and I still take it because that side effect went as time went on. Do you have someone you can talk this through with ? To support you through this as the less stress you are under the better it is for your RA.

The NRAS has a helpline where they can talk through your diagnosis and provide emotional support too. They also have volunteers with RA who can talk personally to you if that would help. Their number is 0800 298 7650 and they’re open

9.30-4.30 Monday to Friday

Their publications are very good on all aspects of having RA and you can download them here

nras.org.uk/publications

Do keep coming here as much as you like and ask questions or just use us to allay your fears. We have all been where you are now and we are all still here and surviving 😊 Sending you a big hug.

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cathie
cathie
in reply to Audrey16

I’ve had ra for 20 years. The medication may have sometimes made me feel queasy but never to throw up! You may feel tired you may have to change a few things but there’s some fantastic treatments out there now. So take things step by step xxx

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Audrey16
Audrey16
in reply to cathie

Ok thank you I will do just that thank you

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cathie
cathie
in reply to Audrey16

and dont hesitate to share your worries. We're all different but we can help a bit XX

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Audrey16
Audrey16
in reply to cathie

Thank you so much

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MusicIsMagic

Audrey, just want to let you know I took prednisone for a few weeks and have been on MXT for about 10 weeks. I felt a little nausea, but never threw up. I get a little diarrhea so I snack on cheese the day I take the MXT. lol. You'll be okay! Take things one step at a time. You've done the right thing by coming here. I'm in the US but this is my favorite forum.

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Summerrain14

Welcome to this great forum Audrey. I am too registered Blind, Deaf/Blind these days and have Lupus and RA. My rheumatologist is very mindful of medications and the potential effects they can have on eyes. There are lots of choices out there. I started on meds around 6 months ago and find that I am able to live and full and active life which I am so appreciative for. x

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Audrey16

Thanks so much, everyone here is so strong. It's good hear that you are doing so well

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Dodo1943

Audrey,

Please don't despair.

I was not diagnosed until 2016 - just before my 73rd birthday - in the midst of the only horrific 'flare' I've ever experienced. I have a long history of orthopaedic problems and wore calipers in my childhood before the advent of the NHS. My eldest brother had survived polio in 1933 aged 7, albeit with paralysis of both legs, so I had focus on disability at a very early age.

Since more recent diagnosis of age-related macular degeneration (AMD), I don't participate much on here now, unless I can offer a fresh angle, but I'm not going to succumb to everything that life has thrown at me! On a positive note I've just invested in a new computer and my 'guru' is looking to find a 27" screen to improve my visual experience and a 'state of the art' colourful keyboard and mouse.

I've been in 'clinical remission' from RhD for quite some time now, thanks to Methotrexate (currently 15mgs by tablets weekly), and I gradually weaned off the steroids (Prednisolone) successfully over 6 months. My ankles and knees suffer badly when I spend too much time on my feet so elevation of my legs is essential after I over-exert. In retrospect I rue the day I stopped cycling, which no doubt had preserved and protected my ankles, but avoiding the fumes and volume of road traffic has probably enhanced lung function.

If you can access a good, mushy novel that you've enjoyed in the past, your time will be better spent in immersing your focus there than in Dr Google.

I wish you well!

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Audrey16
Audrey16
in reply to Dodo1943

Thabks so much, I wish you well too

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TheBoys

Hi

Welcome to the forum.

A year ago I was a wreck..physically and mentally in pain and depressed..frightened of the future.

Now ..aside from a few fright days when a bit of panic sets in which feeds my hypochondria...all.is very good. No real pain symptoms and a pretty normal life. I even drink at weekends.

It will be scary at first but believe me, things do get better and this forum is a great place to get and feel support; it will alll work out!

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Audrey16
Audrey16
in reply to TheBoys

Thanks so much. I am like this at the moment. I've stopped Googling and am just listening to you all and my family. The only unsettling bit is that everyone is different. I will do my best to calm down.

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Penguin

Hi Audrey, kind of what everyone else said but I just wanted to add another voice saying don't worry! I was diagnosed 12 years ago - honestly the diagnosis was a relief because I'd been wondering what the heck was wrong with me. I was in pain all the time and not managing to lead a very normal life - I've now been on methotrexate for most of those 12 years, and barring the odd flare (maybe once or twice a year) I'm doing great, pain free, working full time and leading a normal life. Now yes, I'm one of the luckier ones, but also living proof that the diagnosis doesn't have to be such a terrible thing. :-)

And if the first lot of meds don't do it for you, there are loads out there and you're bound to find something that helps- I was watching a brilliant NRAS seminar last night on all the new drugs that have either just been approved or are in development, and honestly, things look pretty good for RA patients!

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Audrey16
Audrey16
in reply to Penguin

Thank you so much. I have been given Sulfasalazine and I keep hearing about the medication you are on but I can't take it because of my sight. I hope the one I have does the same as yours. Thabks so much and I'm relieved to hear you're still working full time.

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nomoreheels

That's a shame because methotrexate is considered the gold standard. In all this time I hadn't realised you couldn’t take if if you had sight loss. As most of us know hydroxychloroquine has the rare side effect of causing retinopathy, usually after >5 years of taking & why it's recommended we have regular eye tests. You live & learn!

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Audrey16

I heard that it was from the Rheumotoligist but you're ok which is great

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nomoreheels

HCQ was the first DMARD I tried, it became less effective so was stopped. MTX the second & the one I remain on today having tried it with sulfasalazine & then when that was stopped leflunomide. Neither worked well with me so just on MTX.

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Audrey16

It seems it's just finding the right one for you. Do you mind me asking how can you get an odd flare or two if you're on the pills? I thought people would stop having them on the medication

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nomoreheels

I inject MTX & as long as I don't stress over anything I am pretty much well controlled & avoid bad, lengthy flares. I have only this last week had a dose reduction so it remains to be seen if that holds thing well enough. I'm still taking prednisolone (corticosteroid) which definitely helps.

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Audrey16

Best of luck, I hope you stay steady on the reduction. Thanks so much for your help

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Penguin

I had a friend who did really well on sulfasalazine - we've lost touch over the years, but she was doing great last I heard, so hopefully you will too. And if not, there are LOADS of other things out there. You have to try one of the 'basic' drugs like methotrexate or sulfasalazine first, but if they don't do it for you, there's lots more to try!

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Audrey16
Audrey16
in reply to Penguin

Ok thanks so much

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Summerrain14

I am on Sulphasalzine too, it has really helped a lot.

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Audrey16

Ok thank you that's really great

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Audrey16

Can I ask if you had any side effects? What was your RA like when you were diagnosed? I know everyone is different but I can't help but ask, I hope that's ok

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Summerrain14

Of course please do ask. Always happy to help if I can. My RA was bad when I was diagnosed with my mobility being really affected and needing to use a walking stick. The pain was really bad at that time too where it was affecting my sleep and daily activities. I was given a steroid injection into my muscle to help with several joints which really helped whilst the sulphasalzine started to work as it can take up to three months for the effects to be noticed. I now walk again with no walking stick. I do still get some pain and mild swelling in my affected joints but nothing like I had. It really has helped with my fatigue and pain levels too. I do still have days where my joints and pain levels are a little more than others but on the whole I am much better than I was. I was very fortunate and have had very little side effects. I had some headaches in the first couple of weeks but other than that no other side effects at all so far.

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Audrey16

I am similar. I've been on crutches for a year and I can't walk. She diagnosed me with hypermobility syndrome too so I'm not sure if it's that or RA in other joints. I'll ask. Thabks for listening and helping. I'm glad you are better

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Audrey16
Audrey16
in reply to Audrey16

I'm so pleased you're doing well

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