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a year i will never forget

Posted , 6 users are following.

nanaally
nanaally

hi ive been a rheumatoid sufferer for over 20yrs.. i first started with painfull swollen hands .. and  painfull feet , ive had loads of different meds over the years but sadly they didnt work for very long ... ten yrs ago i started to have terrible night sweats and i mean sweats the bed was soaked... i went to see my gp and was told that it was my age and that i was probably entering into the menapause.... but it got seriously worse the sweating happened at anytime day or night ,it was like a river and very uncomfortable.. on a routine visit to see my rheumatolgist  i had a bad attack of these sweats , i was asked how long id had them , i told him what my gp had told me what she said it was the menapause... he didnt look like he agreed with that diagnosis, so he sent me for a lot of blood works ,ct scan, and mri scan ,,,when the results came back i was told that id had an aortic anyerisum.. and it was cause by rheumatoid arthirtis and  was treated with 3days of infusion steriods ... then high doses of oral steriod after that , that was ten years ago im still on steriods and still was trying different drugs to dampen down  the flare ups .....Then to cut a long story short .. two of my finger on my left hand turned black and gangrean set in .then my toes on my left foot  turned black and painfull ..i was taken i hospital and was given flowlan.. to open the blood vessels .. at that same time my general health was very poor .i got pneumonia, but because i was taking a lot of steriods it masked the infection so i was teated for a chest infectionand not the pneumonia....END result.. i had a cariac arrest.. i was in intesive care for 2 weeks and my family were told that it didnt look good.. But i woke up , very weak but alive .. i lost my toes saved my fingers but blood clots had developed over the left side of my body.. i was put on eprin a blood thinner injection.. and more steriods... My consultant have now given me a new diagnosis and it is RHEUMATOID VASCULITIS... its very serious, looking back ten years ago .. i must of had the condition then ,when the anyursm was diagnosed.....So now i have ritixibab infusions every six months to see if it can be controlled ... upto now im ok , but always try to be very awre of any changes . i can act fast ...IT IS A VERY NASTY DISEASE... thanks for letting me rant ..  

0 likes, 10 replies

10 Replies

  • sukes
    sukes nanaally

    Posted

    Oh my goodness nanaally, I'm so sorry to read your story, you have certainly gone through it and I don't just mean the past 12 months.  You must be a strong and determined person to come through all that.

    My dad bless his heart, had an aortic anyerisum and we were told at the time that it was a very serious condition.  I hope your health improves and I also hope that your story will alert other people to symptoms they may be suffering with.  Thank you. x

    • nanaally
      nanaally sukes

      Posted

      Thanks sukes for reading my story .. i hope it helps other people who are suffering with rheumatoid ,and opens people awareness to the complication that can come with it .... x
  • cindy52759
    cindy52759 nanaally

    Posted

    I am so sorry for what you have gone through!  Thank you for sharing your story.  I will certainly be more aware of any symptons that I get, that's for sure.  I hope you are feeling better.  It is a very nasty disease. You wake up each morning not knowing what RA is going to do next.  Take care!

    • nanaally
      nanaally cindy52759

      Posted

      thanks cindy for reading my story, i hope that it has inspired other with RA to be very alert on how things can change ...please take care x
  • karen612
    karen612 nanaally

    Posted

    I'm very sorry for your troubles, you've really been put through the wringer.  This post is much appreciated for 1)advising us to know symptoms to look out for and 2) reminding us that though it may seem silly to be informing the rheumatologist of every little quirk, it's important.  I am always shocked to hear that some have their RA treated by a GP.  It is also of great interest to me that your diagnosis changed after a long period of time.  I hope you are healing and finding some relief, keep us posted.  It certainly is a nasty disease.

    • nanaally
      nanaally karen612

      Posted

      thanks for taking time to read my story .. there has been a lot more things that has happened in the coarse of 20yrs of RA .. but i would be writing a book, so i shortened the story down to what i thought was important information to share with other RA suffers.Ilook at RA now as being like a cancer and when other  illness turn up they are seen as secondries... after all the drugs like ritiximab is a chemotherapy treatment and that has its side affects ..take care x
  • trixietyme
    trixietyme nanaally

    Posted

    Thank you so much for sharing your story! I'm so sorry you've had to go through this. My husband has been having terrible night sweats (with an odd sour odor,) for a few months.  His GP did not seem interested, and we're trying to make him refer my husband to a Rheumatologist (but the office won't return our calls.)  

    • nanaally
      nanaally trixietyme

      Posted

      please be very persistant with getting help for your husband .. and dont be made to feel like your overreacting , even if its nothing youll of had it checked ..Good Luck x 
  • carol303055
    carol303055 nanaally

    Posted

    Oh my word, you have really been through the mill. Thank you for sharing your story. It is a very nasty disease and very specialised as I found out last year. I kept telling my GP who has generally been very good that I had a 'silly' little cough. I had also had a nasty chest infection about April and broke 3 ribs coughing at that time. It sounded like a habit more than a proper cough but I knew it wasn't right. My chest x ray wasn't revealing much and my chest sounded 'clear'. However, through a specialist respiratory nurse friend of mine I saw a respiratory consultant. CT scan showed early fibrosis possibly due to the previous infection or methotrexate. 6 months later a further CT showed significant deterioration and a bronchoscopy showed fibrosis and underlying infection which has been very resistant to antibiotics. Hopefully things are improving now but if I hadn't persisted I don't like to think how my lungs would be. My GP is great but they can't be an expert in everything.

    • nanaally
      nanaally carol303055

      Posted

      Sorry to hear that you 2 have had a bad time , We are the patients with RA ,but we are also the professionals ...we know when things arnt right ,  when changes happen .im more on the ball especially with my consultant..Hope you start feeling better soon take care and take it easy ...x
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