New to rheumatoid arthritis

Meli · 2021-08-13T18:07:04+00:00

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Hi I'm 54 and have recently been diagnosed with rheumatoid arthritis. The future feels really scary to me at the moment. I'm not on any long term meds yet but will soon be taking hydroxychloraquine. I just wonder what type of life can I expect. Will I lead a relatively normal life with this disease. I feel really anxious at the moment . Can anyone shed any positivity on my situation as I'm finding the uncertainty hard to deal with ?

Thank you.

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Comments

Mike

my name is Mike and I’m 56 and have had RA since I was 33.I was initially on azathioprine which is not really used for RA today but it worked ok for me and in 2009 I went into remission and stopped all medication.All was good until 2018 when my mother died and it came back really severe and I was put on methotrexate and sulphazaline and it’s now under control

I guess for me it’s been up and down and fortunately never too crippling and my life has been reasonable ok

There are good treatments and good rheumatologist and you can be optimistic about the future

I do get down sometimes but it’s so important to be positive and not feel sorry for yourself because you’ll only feel worse

I wish you good luck and hope you get improvements with treatment

Meli

Hi Mike, thank you very much for your advice. I was beginning to wonder if anyone would answer my post, I've been looking eagerly to see if anything positive could be said about this condition. It's good to hear that you have experienced remission and were able to stop your medication and now that you are back on it, your condition is stable. I'm glad also to hear that your condition has not been too crippling and your life reasonably ok. I suppose it's something that takes time to get used to and that fear of the unknown can provoke lots of anxiety. It's all very encouraging, what you have said and I thank you very much. I will keep reading this post if I am feeling scared. Thank you for your good wishes and take care.

Wendolyn1

Hi Meli,

My name is Wendy, and I was diagnosed with RA about 7 years ago at the age of 52, where do the years go to?? Yes it was a shock when I was first diagnosed, even though I suppose it was a relief to finally know what I was suffering with. I didn't even read up on anything about it because I didn't really want to know to much. The internet can tell you too much sometimes, although sites such as this are a good way to feel part of a community, and amongst like minded people.

I have always been a lively fun loving person who enjoyed Ceroc dancing and getting out and about socialising etc. This all slowed down quite a lot when I was first suffering with the various areas of pain through my body. Once the specialist put me on Methotrexate & Hydroxychloroquine though things started to improve, and over time my aches and pains started to diminish. This was a relief and I even went back to my dancing etc. Of course I would rather not be putting any chemicals into my body, but unfortunately this is what life has dealt me. The majority of the time now I lead a mostly pain free life with just the odd flare up.

I hope you soon start to feel better, I'm sure you will once you start your meds. It is only natural to feel anxious and overwhelmed with everything in the beginning but it's good to share your feelings and hear other people's stories.

Take care Meli, and look forward to a chat again.

Big hugs, Wendy xx

Rina

Hi @Meli, it’s good to see you on the forum,

I just wanted to post a positive post to you as I can understand how shocking it is to hear about a diagnosis of RA. I’ve had had RA since I was 19 and I’m now 64. It’s been a long time, with some pain, plenty of medication and quite a few surgeries and replacements over the years. However, I completed university; had a good career as a University Librarian; married; had two daughters; retired at 59 and have just returned from a 6 day trek along Hadrian’s Wall. Yes, there have been difficult times but looking back, doesn’t everybody have them in some way? My life has been lived with RA but it’s still been a great life and I’ve managed to do most things I’ve wanted to. I’ve had periods of remission and flare-ups but I’ve learned to go with the flow and remember that all things pass. I’ve been on a variety of drugs over the years and am currently on hydroxychloroquine which I’ve been on for over 10 years and which works for me.

I can understand your fear of the unknown but I want to reassure you that your life will be fine ( who can say what normal is?!)

All the very best, Rina xx

Meli

Aw Wendy and Rina, thank you both for your really positive posts. It's so good to talk with people who have had years of experience with this disease. When I was a child I can remember a little old lady with twisted fingers and who walked bent over . This was a great aunt of mine and as a small child I couldn't understand why she was like this but later, as I got older, was told she had RA. This is 45 years plus ago and thankfully I am aware that treatments are much more advanced now but this is the image I still have in my head of someone with advanced RA. I do have an history of anxiety, especially around medical issues and worry about taking drugs because of past experiences with side effects but hopefully if I can get onto the drug safely and see some results, it might help me to feel more confident. Thank you both for taking the time to answer my post, it has helped me tremendously and I hope you both continue to stay well . Take care. Meli xx

Lau

Hi Meli,

I was grateful to see your post, as I to was diagnosed yesterday. I am 51. I thought I had carpel tunnel syndrome and more recently have had pain and flare ups until my orthopaedic GP saw it and immediately realised what it was. I feel the same. I guess I am coming to terms with what it may mean and all I have read suggests that it does not need to define us. I’ve joined this forum today as I think this is the best way of finding out from experts who live with this condition .Our experience will come from a place of understanding. For this I am grateful. I wish you well on your path and send you lots of positive thoughts. Take care Lau

Chris_R

Hi @Meli

Welcome to the online community.I see you have been posting and contacted other members on the forum.

It is very confusing when you have first been diagnosed with any form of Arthritis and scary aswell.

Here are a few links that may help you

Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org)

Versus Arthritis | All of us pushing to defy arthritis

Hope this information helps.Please keep in touch and tell us your journey as you go through your diagnosis we are here to help.

All the best Christine

Poppyjane

Welcome @Lau to the online community,

It is good to see your very positive thoughts for another member in your very first post, it is much appreciated to receive these sorts of messages. You have recently been diagnosed with Rheumatoid Arthritis and hope to gain a greater understanding as you come to terms with its impact. I attach some links which I hope you will find helpful

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis

I am making the assumption that if you had thought your health problem was carpal tunnel that your hands and fingers are the main source of your concern and therefore information about them might help

https://www.versusarthritis.org/about-arthritis/conditions/hand-and-wrist-pain/

Many members have found the support of mindfulness exercises to be beneficial and from your positive comments above I feel that is a philosophy that you are in tune with.

https://www.versusarthritis.org/news/2020/may/meditation-and-mindfulness-and-how-it-might-help-you/

Thank you again for your support of @Meli .

Do stay in touch with the community.

Take Care

Poppyjane

Lau

Thank you Poppyjane very much appreciated. I will certainly welcome & appreciate all advice available. Still working it through as is to be expected. Thank you for reaching out. It is very kind of you.

Lau

Meli

Thanks to everyone who has responded to my post. It's a lovely place to come and talk to others when you are worried about anything, knowing that you are not on your own. I wish I could get the same support for my other medical condition, burning mouth syndrome which is causing me a lot of distress at the moment. Sending lots of love and best wishes to Lau and hope to read more of your posts at some point . Take care xx

Kitty

Hello Lau,

It’s difficult to say how you RA will affect you. I was diagnosed aged 36 in 1987 and for many years I was well enough to work, ride a bike and walk for miles. Now I’m 70 and also have OA and Osteopoosis. I can barely stand and need a Walker to get round. I hope the Hydroxy helps you. I take Leflunomide, MTX and Prednislone, along with Fentanyl patches and Oramorph. May I wish you well.

KatleenT

Topcat64

https://community.versusarthritis.org/discussion/54886/new-to-rheumatoid-arthritis

I feel the same as you Meli , the future does feel very very scary , like yourself Iv just been diagnosed in January 2022 ….. considering there is only 1% of the uk suffer from RA I am just struggling to accept this condition…… I have a group of 6 close friend and 1 friend was diagnosed with this 18 month ago and for now to be diagnosed myself the chances of 2 of us to have this just seams so unrealistic given only 1% have it …… but I’m trying to stay as positive as I can as I can’t change this in my body ….. let’s hope some from this forum can give both of us some of the answers we are both asking ….. stay strong and have a good day if you can x

Ezzmay

Hi I’ve been diagnosed with rheumatoid arthritis I’m currently taking codine and naproxen for pain and I’m taking Hydroxyquine.I have never felt so Poorly I’m due to start taking Metratrexate also.I have pain every day the pain and stiffness is in my fingers,wrists,knees,ankles,shoulders,toes under my feet and also my jaw.I feel so unwell I’m extremely exhausted I look pale my eyes are so dry.I have no energy to do anything.when I had some scans done the rheumatologist said I also have lots of inflammation in my tendons also.will I ever feel better?is there anything I can do to start feeling better I’m desperate to feel ok again.

HelenS

Hi @Ezzmay

It's nice to meet you and welcome you to the Versus Arthritis online community.

I understand from your post that you have a recent diagnosis of rheumatoid arthritis and are currently on hydroxychloroquine, but are experiencing side effects.

It may be that hydroxychloroquine isn't a suitable treatment for you, and some people need to try at least 1 or 2 DMARDs before finding the right one that works for them. Both hydroxychloroquine and methotrexate can take a while to start working, this can be up to 12 weeks before you start to notice any difference, but you should still keep taking it, however if you are worried about your symptoms then please do speak to your GP or rheumatologist as these medications may not be suitable for you.

I've included a couple of links from the Versus Arthritis website below hopefully you will find these useful.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Now that you've introduced yourself do take a look around at the other categories Living with Arthritis tends to be the most popular, and please do keep in touch

Best wishes, Helen

Betty63

Hello Everyone I have just joined today as well I have been diagnosed with RA at the end of June so still coming to terms with it I am taking hydroxychloroquine and Ibrufan the hospital has mentioned methotrexate but I am not sure I can’t use lbrufan long term I am lucky enough to still be working just now and hopefully it continues I am just worried about the side effects from methotrexate so glad I joined this group the information is great

Saw74

Hi everyone! Newbie to the group! Well I have been diagnosed with RA earlier this year and I must say it’s been very overwhelming I feel like I was given this diagnosis and just left to deal with it.. I’m currently on diclofenic and gels as I’m still waiting to be put onto the right medication done sound very scary and side effects scary too. My friends and family have been so supportive but I’m struggling to put on a brave face now, my life is changing so much and everyday I’m in pain .. I think I could manage the pain everywhere else on my body but I’m struggling with my hands fingers and wrists so bad to the point I can even take the lid of a bottle .. it’s so soul destroying, I’m 48 years old just and I never ever would imagine I’d be like this.. I’ve had to give up my career in nursing as I can’t fulfil the job roll anymore which I’d been in for over 20 years I’m feeling so fed up with everything!

apologies for the miserable first post I do aim to snap out of it xx

Chris_R

Hi@Saw74

Welcome to the online community,it is really great to see you posting,and no i dont think you are miserable you are just in pain and have been left alone to figure everything out with your diagnosis. You have come to the right place for companionship and honesty and support as everyone on the forums have some form of arthritis and will help as much as they can.

You say that you were diagnosed with RA this year and are especialy in pain with fingers and wrists.

Here are a few links that may help.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/conditions/hand-and-wrist-pain/

https://www.versusarthritis.org/get-help/helpline/

Hope all these links help,i have included the help line as you may want to speak with someone.

Please keep in touch and tell us how you are getting on also do go onto the forums and chat it often helps.

All the best Christine

PeterJ

https://community.versusarthritis.org/discussion/comment/698718#Comment_698718

Hello @Saw74 and welcome to the community. We are a friendly and supportive group and I hope that you will find that as well. Have a look through the links in the above comments and I am sure you will find some information to help you. It is good to have you here and I hope that you will keep posting and let us know how you are getting on.

With very best wishes

Peter

stickywicket

Hi. You say you were diagnosed earlier this year but are still only on diclos. Were you actually diagnosed by a rheumatologist? Or by your G.P and now waiting to see a rheumatologist? If the latter then I think you should ask the GP to hurry them up. If you have already seen a rheumatologist I do 't understand why you've only been given an NSAID. Are you waiting for the necessary tests before DMARDS. How long have you been waiting?

By the way, your post isn't miserable, just straight. I hope you can get something happening soon.

stickywicket

P.S. check out electric jar and can openers. I'd never open anything without mine.

Arthuritis

Hi @Saw74 , just under a year ago I was in the same place you are now. Please note @stickywicket ’s response carefully, there’s loads of experienced wisdom there. The key to managing RA effectively is getting it diagnosed early, and treated hard and fast, ie, no half measures. The longer you leave it the worse it gets and spreads from your small joints to larger ones.

I was diagnosed later than desirable, and I hesitated with hydroxy & methotrexate (MTX) at a time when covid was still rampant. However I eventually did go on it and am on the max UK dose, I take 15mg at night and 10mg in the morning each week, split to reduce the overwhelming nausea. A day later after the MTX has done its thing, I take folate or folate containing foods like leafy greens eg romaine lettuce, oranges and spinach or take folic acid tabs to stop the nausea or mild mouth ulcers. Sounds horrible when you read it, but its loads better than being in pain struggling with any movement or opening lids.

I also found dropping legumes reduced the pain of flare up intensity. Since last February my pain is mostly gone with just a burning sensation occasionally to remind me I’m not cured, but my strength has returned and no longer need my walking stick or can & jar opening devices, this I attribute to getting medicated effectively just in time before too much irreparable damage gets done to the ligaments holding the joints together.

I also turned veggie, which seems to help as well.

Under NHS NICE guidance (NG100) your GP is supposed to refer you to a hospital rheumatologist promptly and they need to see you within 3 weeks of a positive ACCP test, which is quantitative and steadily rises with untreated RA, so gives an indication of how aggressive it is when you start treatment.

Please see a rheumatologist ASAP, and get yourself started on meds.

All the best

Woofy

https://community.versusarthritis.org/discussion/54886/new-to-rheumatoid-arthritis

Hi Meli. I’ve recently been diagnosed with RA. I have been given a short course of steroids which are helping with the pain.

i have recently started sulphsalazine, they did try me on Hydroxychloraquine, but I didn’t get on with it very well.

all a bit scary isn’t it. Good luck with your treatment. Have you been in a lot of pain with your RA?

Bobbibrowngirlie

https://community.versusarthritis.org/discussion/comment/698718#Comment_698718

Hi @Saw74 and the rest of the group

I'm in a similar position, have been struggling with joint pains now for 19 month having initially fought to get a referral from my GP (they pretty much stopped doing them during COVID). Have seen orthopaedic consultant who said bloods show inflammatory markers and suspects inflammatory arthritis as a result of COVID so am now on another waiting list. I'm taking paracetamol and diclofenac but experiencing side effects such as dizziness and fatigue. Hoping to be seen and diagnosed soon but not hopeful as I've recently found out my maternal grandmother had RA and I'm only 50 and had surgically induced menopause to add to that list. Also an NHS employee but not feeling very supported by work management. Feeling rather fed up but pleased to have found this page.

noddingtonpete

Hello @Bobbibrowngirlie and welcome to the community. We are a friendly and supportive group and I hope that you will find that as well.

I understand that you may have inflammatory arthritis and on a waiting list for a consultation to find out. I would recommend having a look at the links above which are articles from our website. Also have a look at the following

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

and we also have a Helpline if you have any specific questions (though we are not medically trained so cannot give diagnoses).

Please keep posting and let us know how you are getting on. You are among friends and people who understand now, and I am sure others will connect with you to share their thoughts and experiences as well

With very best wishes

Peter (moderator)

Beano100

Hi all, I have RA, I already had arthritis in my spine, my legs but then my hands started to lock, I could not move my fingers first thing in the morning and it takes time for my legs to wake up and I now need help getting in and out of bed I've already had a double heart attack and then a stroke it just seems one thing after another I'm fear of my electricity and gas bill coming through the door my bills was £170 this time last year a month what's it going to be now I've already cut down on food I have one hot meal every 2 days I have some digestive biscuits 2 times a day the £150 we got off the government was a joke and this £400 is a joke my bills this year are 3 times of what they were last year and the energy companies are getting away with holding us to ransome Conservatives don't care all there heating bills are paid for even £300.000 for one MPs horses to be heated in the winter they don't pay gas or electricity so they just don't care I can't afford to buy new batteries for my disability scooter there £900 how the hell they came to this I will never know I have not been able to afford to charge them up since march last year so now the £900 batteries are dead it stinks