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Newly Diagnosed

Posted , 14 users are following.

5hellsbells
5hellsbells

Hi all

Well... i was officially diagnosed with RA last friday...id been experiencing sore fingers/ feet..which id put down to work/new shoes

I went to Drs..he ran test..got an apl with Rheumy and he confirmed it..but thats all i know just now..

I got a steroin inhection which helped..though my right foot it a bit sore in the mornings.

Was put on Hydroxy and Naproxen..naproxen made me sick..so dr took me off.. gave me omepeazole and co codamol (which i havent taken yet cos i drive)

Anyways..i was handling it well..till Tuesday..when i looked up all up on google....and my world came crashing down..the horror stories on there! 😲 Poor hubby came home to a bubbing mess!!

So currently... im feeling overwhelmed and quite tearful..which isnt helped when folk you tell tell you THEIR horror stories..

I do have an ex work colleague who has reached out as shes had it for 20 years and leads a pretty normal life..

I think its the not knowing thats the worst..dont go back to Rheumy toll 21st Oct..

Well.. thanks for listening (reading)

Shelky

X

0 likes, 29 replies

29 Replies

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  • EileenH
    EileenH 5hellsbells

    Posted

    If you are going to look things up on google - you have to find the positive stuff too! It isn't easy with RA, no-one going to say that, but you might find these blogs more comforting than what you have found: Carla's Corner and Rheumablog are two ladies with RA who do an awful lot of things and manage well despite their RA. 

    I was at a rheumatology conference in May with a load of amazing ladies with pretty advanced and severe RA from all over the world - they had problems because of our work load but were unfailingly cheerful.

    And yes - it is always the unknown that is so scary! You have been diagnosed early - that always helps.

  • debbie_39876
    debbie_39876 5hellsbells

    Posted

    Hiya,

    It is scary when you first get told you have it.. But with good management and the right drugs your feel better, took me a long time to come to terms with it, but I was a right feel sorry for myself back then... But like you I got all the scary stories, and I googled... My specialist once told me that Google is not my friend... Your mainly only come across horror stories... Try and stay positive.. I know it's hard but my nurse told me last week that stress and anxiety makes your symptoms much worse, something I never knew... So try not to worry too much, and on your next appointment go armed with a list of all the questions you want to ask because when you get there you might not remember things you really want to know

    Good luck x

  • Onslow315
    Onslow315 5hellsbells

    Posted

    Hi,

    I received diagnosis and as soon as I returned to my desk I did a Google search. First hit I see is "post menopausal woman with RA have a short life expectancy". I was a complete mess. Only got worse. Doctor was no help. Eventually got new doctor which helped. Also, quit the google searching. (Or at least reduced). I started on a low dose of Zoloft and I think it helped with all the anxiety. You might want to ask your doctor about it. Doesn't have to be long term. Just to get you over this hurdle. You will get over it. It's not easy, but hang in there. I'd say it took me 18 months or so to get to a somewhat normal life.

    Wishing you the best.

  • Debra1954
    Debra1954 5hellsbells

    Posted

    Hi, I do feel for you as I think when you are newly diagnosed it can be a lot to take in at first. Reading your post reminded me of when I was diagnosed 8 yrs ago. My husband was waiting outside the hospital for me after I'd been seen by the rheumatologist who had just confirmed I had RA ( sero-positive). Without time to really take it in I was sent straight off to have a steroid injection. All I knew of RA was of a friend who had it and had been quite ill and now walked with a stick. So I did feel a bit scared. I met my husband, told him the news, had a little blub and we went for a coffee. As my rheumatologist told me when I naively asked the question how bad would I get...there is just no telling. Everyone is different. What works for one won't for another. Methotrexate didn't agree with me so I chose to go on Plaquenil (Hydroxychloroquine) which i am still on. After being told I could deteriorate more quickly than someone who was sero-negative I have recently been told I am in remission. Yes I do still hurt in places and I do still struggle a bit coming to terms with not being able to do all the things the way I used to but I am walking more and trying my best to keep fit and generally feel a lot more positive than in the early days. I'm sure you will read and hear lots of horror stories but everyone has their own unique story and they aren't all negative.

    There really is no point worrying about what might happen, how you might be in the future, because it may never happen. You do learn to get to grips with the condition and live life the best possible way for you...no one else. This forum can be good for making you realise some of the problems you experience are not just in your mind! Good luck.

  • Buckeyes
    Buckeyes 5hellsbells

    Posted

    I was diagnosed at year and half ago!  If it wasn't for some swelling in hands and ankles I wouldn't even know I had it!  No pain except for back caused by stenosis.  I tried several drugs before ending up on Enbrel.  

     Hopefully they will find a mix of Meds that will work for you!

    Good luck!

    • Emily1234
      Emily1234 Buckeyes

      Posted

      Hi there I just read your post and wondered what your blood tests showed being in no pain you said. Did you have elevated ccp, rf,cRP or esr? How do you find enbrel? Any side effects? Thanks in advance
    • Onslow315
      Onslow315 Emily1234

      Posted

      Hi,

      I was diagnosed in Feb 2014. No real pain. Just some finger swelling. I'm taking Plaquenil. My CCP =153 , RF = 14.5. CRP and ESR normal.

      What are your numbers and what are your symptoms?

      smile

    • Justgettinby
      Justgettinby Onslow315

      Posted

      My RF was 297 and CCP was over 250. They only measure up to 250 since over 60 is strong positive, so who knows what my actual number is, but I guess it doesn't matter anyway. My esr and crp were also normal. I believe this is because I don't get swelling like some do (at least not so far) and I've always eaten a pretty clean diet, exercise and take vitamins, tumeric, and other supplements even before RA diagnosis. I have the usual hand, foot, wrist, neck pain with neck being worst .

    • Onslow315
      Onslow315 Justgettinby

      Posted

      Hi,

      Did they tell you anything about the numbers indicating level of disease? Also, did they tell you they would retest in future to see if they change? I've read that the fact that a person is CCP +, that's all that matters. Someone with 79 and someone with 250 are in the same boat. My doctor doesn't even retest CCP or RF. Seems like once you show those markers, you got it.

      Isn't logical to me. It seems that if you are treating a disease and there is a test for it, there should be a way to measure how effective treatment is. That lower numbers mean good results.

      Have a good night.

    • Emily1234
      Emily1234 Onslow315

      Posted

      Hi thankyou for your reply how do you find plaquenil side effects? How is your RA now? I've just been diagnosed currently on meds and at present its just in my knees x

    • Emily1234
      Emily1234

      Posted

      On No meds not meds as put typo error!
    • Onslow315
      Onslow315 Emily1234

      Posted

      Hi,

      I've been fine except for my index finger. Got an injection in it a few weeks ago which brought immediate relief.

      I've had no side effects from Plaquenil. I go for the eye exams annually.

      Take care,

      Amy

    • Emily1234
      Emily1234 Onslow315

      Posted

      Thanks Amy, could I just ask one more thing.....do you feel pretty much normal now like your good old self?
    • Onslow315
      Onslow315 Emily1234

      Posted

      Hi,

      I'm feeling great. Have low days now and then, but nothing like I was a year ago at this time. I was struggling everyday. Anxiety, depression, etc. I went to sleep and hoped I wouldn't wake up. It was a snowball effect for me starting in 2014.

      Hang in there. The dust will settle. Don't hesitate to ask your doctor for a low dose of Zoloft or similar. As my doctor said, doesn't have to be long term use. Just to get over hurdle. The meds and talking to friends and a gal from psych dept at local univ helped.

      Take care. Reach out to me if you need to.

      Amy

    • Buckeyes
      Buckeyes Emily1234

      Posted

      I don't remember anything but the RF factor without looking them up.  By the time I got to the rheumatologist it was 985!  Aggressive!  She tried different Meds and ended up putting me on Enbrel.  I have absolutely no side effects!  That is the only thing I use except for vitamins!  It is a biologic but very expensivel. Without insurance it runs around 16,000 but with it it costs me $200 for 3 months!  Because of some swelling she discussed adding sulfasalazine next time.  I was on it before and had no side effects with it either.

      Goid luck!

    • Buckeyes
      Buckeyes

      Posted

      BTW my RF is now 138.
    • Emily1234
      Emily1234 Buckeyes

      Posted

      Glad you have a found a med that works for you, thanks for info and best of luck 
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