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Rheumatoid Arthritis

marie66marie66 Member Posts: 1 Listener
Hi I have Rheumatoid Arthritis and joined looking for information.  M x

Replies

  • gnmeadsgnmeads Member Posts: 185 Pioneering
    Hi marie66 welcome to the Scope community
    How can we help you?
  • LiamO_DellLiamO_Dell Member Posts: 1,114 Pioneering
    Hi @marie66,

    Welcome to Scope's online community! It's great to have you here.

    What sort of information are you looking for? Can we help?
    Liam
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @marie66 welcome to the community :)
    Scope
    Senior online community officer
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @marie66.

    A very big welcome to you today !!!

    We do have other people on here with "Rheumatoid Arthritis"

    They would be worth chatting to if that would be off help ????

    Please please let us know if that maybe helpful ????

  • LiamO_DellLiamO_Dell Member Posts: 1,114 Pioneering
    Hi @marie66,

    As @steve51 mentions, we do have other members of our community here who also have Rheumatoid Arthritis and I'm sure they will be happy to help you and provide you with some more information.

    I've had a search on the community for you, and found a comment from @Matilda on a post earlier this year with some information about RA.

    As well as that, the National Rheumatoid Arthritis Society and NHS Choices websites have information about the condition, too.

    Arthritis Research UK also have some useful online resources and a helpline, which you can call on 0800 5200 520 for free information, help and advice on RA.

    I hope this helps!


    Liam
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @marie66

    There is also Arthritis Care (which plans to merge with Arthritis Research UK in October 2017).  Arthritis Care's Helpline No. is:  0808 800 4050, 9.30-5.00 weekdays.  Website: arthritiscare.co.uk
  • samparrot123samparrot123 Member Posts: 50 Courageous
    Hi @marie66 I have RA bad if I can help you in any way your more than welcome.
  • NannaraineNannaraine Member Posts: 1 Listener
    Hi, my name is Raine. I've very recently been diagnosed with psoriatic and rheumatoid arthritis and am here looking for information. I will visit the Web sites that have been linked here. Thank you. I am also looking to chat with people who have experience of taking methotrexate (sp?). 
  • samparrot123samparrot123 Member Posts: 50 Courageous
    Hi I've got RA and was also put on methtrexate,but be warned that it badly effected my lungs ,it caused fibrosis in my lungs ,after complaining that I was having bad coughing bouts they sent me for a scan which showed up fibrosis ,I was then put on other medication .so if I was you watch your breathing and look out for coughing bouts.
  • GeniedebsGeniedebs Member Posts: 63 Courageous
  • pinkbluefrogpinkbluefrog Member Posts: 8 Scope community team
    edited January 2018
    Hi all, my name is Anne and I have RA, had it since I was 13 so many, many years! I've been through a whole heap of different meds including methotrexate and had a positive experience with it. Everyone's experience with RA and meds will be different, some hugely so I'm only the expert on myself if that makes sense and I can't advise in any way as each person will respond differently.
    I can recommend the Arthritis research site, it's all snazzy and new and full of heaps of useful info http://www.arthritisresearchuk.org which includes information on all the different meds that exist. 

    Best wishes all, 
    Anne
  • Sue52Sue52 Member Posts: 78 Courageous
    Hi all, 
    I also have Rheumatoid Arthritis, especially in my wrists. Along with Osteoporosis which I have had for 20 years.  I have been on Humira for about a year and it has been great as I said before. Just want to advise of a update, which I am now seriously considering asking my Consultant if I am on the right medication. :(
    Basically I had Pneumonia over Christmas and was really poorly for about three weeks. Have been suffering with pains in my lower back, upper back, elbows, legs basically everywhere. 
    Saw the nurse at the hospital yesterday and it appears I have a Vitamin D level of 16 so was given a injection to give my system a boost. She said to me "Please tell me you did not take the injections whilst you had the pneumonia". Lucky enough I didn't !!!
    I have been reading about side effects of Humira and they are a bit scary to say the least.   Humira seriously reduces your immune system.  
    Is anyone else on this drug for Arthritis and had any similar symptoms? 
    best wishes all 
    Sue 



  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @akshayv

    Thank you for the tip about kudus.  I wear sheepskin boots in winter and flip flops in summer.  But casual footwear isn't suitable for all occasions.

    Currently, I am wearing Animal flip flops which are as comfortable as slippers but there are other brands almost as comfortable.  As long as there is a soft footpad - think the material is EVA.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @Sue52

    I've never taken Humira.  I was taking rituximab that controlled my RA quite well but seriously reduced my immune system.  I had recurrent coughs that were cured by antibiotics prescribed by my GP.

    Foolishly, I told my hospital consultant about the coughs and she stopped the rituximab.  Partly due to procrastination by a young registrar who lacked confidence in her own judgement, there was a five months gap between the withdrawal of rituximab and starting abatacept.  During this time my RA became uncontrolled, causing a great deal of pain and stiffness.  My RA still is uncontrolled even though I have now been taking abatacept for three months.  I am told that it can take 4-6 months, or even longer, for abatacept to take effect.

    I wish now that I had not mentioned the side effects from rituximab.  If the abatacept does start to work, then no way will I mention any side effects unless those are very serious indeed.  It's far more important for me to have my RA controlled.
  • Sue52Sue52 Member Posts: 78 Courageous
    @Matilda
    Hi 
    Sorry not been on here for a few months. Lots of things been going on...Can you not ask your rheumatologist if you qualify for Humira. I know once my pain levels got so bad that is when he applied for it. 
    I wish you all the very best 
    Sue 

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @Sue52

    I can't have anti-TNF because I have had cancer.
  • Jaytbm1Jaytbm1 Member Posts: 72 Pioneering
    Hi Sue , I have RA diagnosed 30 years ago. There are a number of medications, see your Rhuematolgist about which are best for you . Sorry that you won’t be able to take certain medicines . Are you remission ? I wish you all the very best xxxx
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