Newly diagnosed

[Papaloo]

Hi

I have been diagnosed with seronegative RA and I am in complete shock. I have no pain just 3 swollen fingers but my inflammatory levels are very high. Is this normal? Has anyone else had mild symptoms and had a diagnosis?

[Hidden]

Hi Papaloo so sorry you have to join us.

Yes it’s a shock when you are diagnosed it’s a complicated disease.

I’m S- negative too. For years I suffered with the “flu” several times a year along side fatigue. I show little or no inflammation in my blood tests.I didn’t and still don’t suffer pain ( if I do it’s sorted with a paracetamol) yes I had swelling in my hands. My feet were the worst my feet splayed and my toes separated but no pain. I’m 4 years diagnosed and still have no pain but I do have mobility problems.

Being diagnosed early means the medication can stop damage.

It’s an individual disease you can suffer all the symptoms at once or just one or two. I’m thankful I don’t suffer pain.

This a great place the collective knowledge is outstanding and most importantly we understand. Please ask if you need help or a chat you will find they are a lovely bunch on here.

[Papaloo in reply to Hidden]

Thanks for the reply J1707I'm glad your not in pain. Did your feet splay after you were medicated or before?

I am still waiting for them to say it was a mistake and my diagnosis is wrong but to be fair, I don't feel too great. I am quite tired and achy and have been for a while. I think it's just the stigma attached to RA and my families shock that I have it.

[Hidden in reply to Papaloo]

My damage was done before diagnosis. I had RA at least 15 years before ( a long story).The earlier you are treated the better and it sound like you have been diagnosed early ( well done your gp) .

I’m sure your reading all sorts and it’s frightening you. A lot of people live a active good life on medication. Finding the right medication can be difficult no one drug fits all. RA is an autoimmune disease much more complicated than Arthritis... personally I call it Rheumatoid disease.

NRAS can help you and your family if contact them.

[Papaloo in reply to Hidden]

Thank you for your help. I think I will give NRAS a call as I have so my questions and little understanding. Due to covid my appointment ,where I had diagnosis ,was very short and I had no time for questions.

[vonniesims in reply to Papaloo]

Good idea

[Mmrr]

I'm so sorry that you have to join us, but you will find much support on the forum, it really is very supportive.

I too am seronegative, my inflammatory markers are normal too, I was diagnosed 4 years ago but I suspect that I have had unrecognised RD for a long time, decades probably.

Being diagnosed early does offer you the best chance of preventing joint damage, so that is good.

It was issues with my feet, fatigue and the most awful brainfog that eventually led to diagnosis.

[Jesnaskah]

Hi,

Sorry to welcome you here. I hope you never feel the pain associated with this disease... As that's what got me first. And I eventually couldn't even move anymore!

I also am seronegative.

The more you can learn about this disease, and the drugs they will offer, the better prepared you will be, not just have your doctors tell you what to do, but to form an opinion of your own, so that joint (no pun intended!) decisions are made about how to proceed with YOUR health.

I have a lot of regrets due to my initial ignorance about RA and autoimmune disease in general...

I was immediately put on MTX. Had I done my research prior to being diagnosed, I would have asked to start on something a little more gentle. But anyways...I started to take control, and on my own, learned what every blood test I took meant, and the protocol that is generally followed regarding treatment. Being equipped with more knowledge made me feel less like a victim in all of it and made me feel more comfortable at subsequent doc appts as the months followed. (***Not that I wasn't an absolute mess at times*** I felt like I was grieving a death and in many ways, I was!)

I personally looked into a lot of holistic and integrative medicine as well. For some, making dietary changes helps a lot. For ex, cutting out inflammatory foods. I'm my case, I can no longer eat any kind of meat or dairy. I hate this fact, I was the biggest foodie, a glutton almost 🤦‍♀️! But I quickly learned that even a little bit of either one will send me into a world of pain that would last for months! Not worth it!!

Thankfully, I can tolerate seafood. So I try to look at the brighter side of things... As our emotions are also tied to what we feel physically. Stress= Flare, and so on.

Hope some of this was helpful! 💃

[helixhelix]

It is a shock, so be kind to yourself as it will take time to process. As others have said getting diagnosed when symptoms are at an early stage is good as increases the chance that you will get it controlled quickly and never get any damage.

With modern drugs many people can be completely normal and stay that way. So this forum isn’t that representative as people who are doing well don’t often post.

My inflammatory markers were high on diagnosis, but are now always very low. I have been lucky to have good rheumatologists who helped me understand and encouraged me to be proactive in my own care. I hope yours is too.

[Moomin8]

👋 I know you are feeling pretty rubbish at the moment, but you are still you. Carry on being the amazing person that I'm sure you've always been. I've said this so many times - don't let RA define you. I agreed with HelixHelix about being proactive about your own care. Also, be kind to yourself; it's ok to be not ok - there's always tomorrow. Keep talking to your friends and family, because it is very easy to become insular - which is not going to help your mental health. I use this at the school I work in and it helps us all focus on ourselves. It also comes as an app and is totally free:smilingmind.com.au/

Keep your day as normal as can be and stay positive. Catching things early is a great thing - you will be ok. Plus you've found us! We're ok too 🤪Full of thoughts, top tips, support and experience x

One more thing....I wish I had been told at the beginning of my journey that I could buy a prescription prepayment certificate; it would have saved me shed loads if money! You can pay monthly - at no extra cost - or a year upfront: I pay £10.40 a month, I think off hand. This means that if any monthly prescriptions cost more than that, you're quids in!

nhsbsa.nhs.uk/help-nhs-pres...

[Papaloo in reply to Moomin8]

Thanks for replying Moomin8 andfor your open arms welcome.

Going by everyone else I seem to be the lucky one at the moment but it's still a scary thought of what the future may hold.

To be truthful on diagnosis I didn't feel too bad but since I have started to notice things my body was doing that weren't quite its normal. I have brain fog but thought it was menopausal and slight aches and pains that I thought was due to getting older. It was only my inflammatory levels that were waving a red flag to my GP. I have a lot of lower abdominal aches and problems with my bowels but don't if this is RA related. I will try and stay focused and look on the bright side as I know it could be much worse.

[Papaloo in reply to Papaloo]

Can I ask you another question as I too work in school. Are you still able to go to work?

[Pippy25]

Firstly welcome to the site, I am sorry to hear that you have recently been diagnosed and it can be hard when first diagnosed to get your head around it all. As others have said it is good that you have got an early diagnosis. One thing to mention make sure you read or get information from good reliable sources such as NRAS. Sending you some supportive wishes, take care x

[rab1874]

Welcome to the gang Papaloo,I’m sero -negative RA also have Angina and OA I’ve had it for 5 years now and am steady at the moment with Amgevita was also on Mtx 20m but not any more as it was affecting my liver,it can take a while to get this horrible disease under control as everyone is different but as others have said you’ve been caught before too much damage is done hopefully,I’m the same xxx

[Aliceeliza]

I was diagnosed early this year and I feel like you, do I really have this illness? I am sero negative and inflammation has dropped down but I still have what I would say are fairly mild but chronic symptoms which affect me both physically and mentally.

[Marionfromhappydays]

Hello 👋

I am newly diagnosed and my takeaway thoughts so far about RA are :

Everyone is different, RA, drugs etc

Patience - you need some

Don't manically google, use trusted sites

Hot water bottles are your friend

Be kind to yourself

Be open minded about drug therapy

This forum really understands

Get ready for people to say "yeah i get this in my toe" 😄

It takes time to process being diagnosed, just let it flow x

[Papaloo in reply to Marionfromhappydays]

Thank you.It really helps to know I'm not alone on this journey xx

[john140]

I was diagnosed in just the same way 11 years ago. I started off with Hydroxychloroquinine and all of the other NHS DMARD drugs none of which worked apart from Methotrexate. But the MTX gave me life-ruining side effects so after several years I stopped it. I find viruses like colds tend to fire up my arthritis, but generally most of the time I manage okay. If I get a flare I manage it with 8 or 9 days of Prednisolone and I am finding I have to do this about 4 times a year. I sometimes get quite severe shoulder pain that jumps from one shoulder to the other, but no matter what I will never take MTX again.

[Papaloo in reply to john140]

Glad your managing ok. It's such a difficult decision to make when being advised to take certain medications. I have no idea what medication I am going to be taking but I know MTX has been mentioned. Your life, I feel, is literally in their hands.

[john140 in reply to Papaloo]

MTX is the NHS's 'go to' drug for autoimmune conditions because its now very cheap and, to be honest it does work its just the side effects -- headaches, brain fog tiredness and liver damage just to name a few. The NHS won't give you and of the sexy biologic drugs unless you are very ill and disabled -- I was just not ill enough for them !

[Hidden in reply to Papaloo]

I have had no life changing problems I’ve been on MTX for 4 years but it isn’t enough I also take a biologic . Everyone is different every drug not just RA drugs have side effects we don’t all have problems

[Kags1068 in reply to Hidden]

Yes, I can happily second J1707. I've been on Methotrexate for 30 years now (alongside other drugs) with no problem.

Just bear in mind that everyone is different and something that someone else can't tolerate could be your personal wonder drug (and vice versa).

Good luck x😊

[Georgiab123 in reply to Hidden]

If it’s not working for you ask consultant to change it, it caused lung disease for me so I had change it to mycophenolate best thing for my RA x

[oldtimer]

There is lots of sensible information on the NRAS website. It's worth spending short intervals reading bits of it which apply to you to keep in perspective your options and how to keep as healthy as possible. You will have reactions very like grief - denial, anger, acceptance - or all at the same time. You have lost your previous healthy state and transferred into this nebulous state of a 'long-term illness'.

Ask what you like on here - however ridiculous it seems. And if you are down, it's a good support group too.

[Papaloo in reply to oldtimer]

Thank you. I appreciate the support x

[pool0009]

Hi Papaloo, I am one of those that am guilty of being nosey and just reading posts most of the time as the meds have worked magic on me luckily. I too am sero negative was diagnosed about 11 years ago started with neck pain and feet swollen and painful. Was started on methotrexate and also on leflunamide, now just on leflunamide as I am in remission, gradually reduced methotrexate now just leflunamide and luckily still feel great. I too felt shock like you and felt it must be a mistake.

Good luck and do call the nras they are very helpful.

[Sallysuk]

I was similar to how you describe yourself and it was a Bakers Cyst in my calf that took me to Urgent Care when my blood tests showed very very high inflammation levels. I was quickly refered to Rheumatology and the rest is history. It was not until my medication started to work that I realised how much pain and fatigue I had had that I had ignored as old age.