Hello

Mistik234
Mistik234 Member Posts: 5
edited 19. Aug 2019, 09:17 in Say Hello
Hi, my name is Yemmy, and I'm new to this forum. I found out about Versus Arthritis whilst watching an ad on TV.

I was diagnosed with Rheumatoid Arthritis in May this year and it's been an up hill battle since then.

From being a very healthy person who barely visited the doctor to now having to take regular medication and regular blood tests and regular hospital visits has been a very big shock to take in.

I'm taking every day as a learning curve with this disease and living my life around it to try and live a normal existence as possible.

I'm glad I've found this online forum for moral support through this Arthritis journey.

Many thanks t4591

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Yemmy,

    Welcome to the forum, it’s lovely to meet you. Any diagnosis for a long term condition is difficult to cope with, I remember a time of going to the doctor being poorly, given instructions and maybe medications, doing as I was told and then being better!

    Then you go with every expectation of the same and suddenly it’s different, you now have to become an important part of a team, all working to minimise the symptoms and maximise disease control and pain relief.

    But you will get there, for quite a time and now during a flare I used to keep a diary, maybe a list or spreadsheet showing, date and time, pain level, activity so when I went to my consultant or GP in between visits they could easily and quickly see how it was going with me.

    You sound like you are doing really well, taking all this on board, to help here’s our leaflet on rheumatoid arthritis

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

    Being aware you aren’t alone was a deal changer for me, I knew whatever problems I had someone else had already solved was quite overwhelming, and I could share without running out of ways to explain how I was feeling. So keep posting, share downs and ups and find some fun along your journey.

    Take care
    Yvonne x

    Your other 2 posts have been deleted because they are copies of this one, your next post will also go into moderation, just so we can catch the spammers before they appear on the forum x
    As soon as we see your post it will be allowed and appear, then other posts will appear as soon as you click submit x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, I am so sorry you have had such a diagnosis out of the blue. Does anyone else in your family have a history of auto-immune conditions? My parents dodged the genetic bullets they happily fired into me so the arrival of my auto-immune inflammatory arthritis was no great surprise but if yours is then I am completely unable to grasp the impact on your life. It must turn things upside down, inside out, the world moves from technicolour to five hundred shades of grey; it's far easier when life's always been that way. Having said that I plunged into depression when osteoarthritis was diagnosed in addition to the other back in 2011. I genuinely did not know it was possible to have both. :roll:


    Over my arthritic years I have seen how early treatment encourages and enables better outcomes. I began back in 1997 when I was 37 but did not get to rheumatology until 2002. When I first went the joint deformations, range of aids, the heavy surgical shoes etc. were much in evidence among the patients, now I am the one who stands out: minimal joint deformity (hidden) and a rollator plus stiff movement is the only sign I have an auto-immune arthritis, everyone else is smoothly mobile, strolling around with ease. I was eventually disgnosed with psoriatic arthritis (I have very little of the skin trouble) nine years after the first indication that something was amiss and four years after beginning with sulphasalazine and methotrexate. All too little and far too late but, as I said, things are better now.

    I now take injected methotrexate plus injected humira, I do the injections myself and have very little bother with side-effects. My hair has thinned somewhat but I'm 60, it was always going to and wasn't thick to start with. Occasionally I feel extra tired for a day or too after the meth injection but as I am always tired that's no big deal. I will do my best to answer any questions you may have about the meds and the arthritis but I am not a doc, just an amateur expert patient. We all get it because we've all got it. DD
  • Mistik234
    Mistik234 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hello DD,

    No, I'm the 1st in my family to have this disease. Both my parents are elderly and in their 80s and have never had Arthritis, so this is a 1st for me at 51.

    I know this is a life long disease, but I'm putting my focus in a positive space and hope for the best for the future, even in the face of joint stiffness and pain.

    So far so good, I've not had any side effects to my meds, but I start next week on Salazopyrin, which has been prescribed in addition to methotrexate, hydocholoqiune, steroids and folic acid.

    Hopefully this additional med will help reduce the swelling in my elbow and knee.

    dreamdaisy wrote:
    Hello, I am so sorry you have had such a diagnosis out of the blue. Does anyone else in your family have a history of auto-immune conditions? My parents dodged the genetic bullets they happily fired into me so the arrival of my auto-immune inflammatory arthritis was no great surprise but if yours is then I am completely unable to grasp the impact on your life. It must turn things upside down, inside out, the world moves from technicolour to five hundred shades of grey; it's far easier when life's always been that way. Having said that I plunged into depression when osteoarthritis was diagnosed in addition to the other back in 2011. I genuinely did not know it was possible to have both. :roll:


    Over my arthritic years I have seen how early treatment encourages and enables better outcomes. I began back in 1997 when I was 37 but did not get to rheumatology until 2002. When I first went the joint deformations, range of aids, the heavy surgical shoes etc. were much in evidence among the patients, now I am the one who stands out: minimal joint deformity (hidden) and a rollator plus stiff movement is the only sign I have an auto-immune arthritis, everyone else is smoothly mobile, strolling around with ease. I was eventually disgnosed with psoriatic arthritis (I have very little of the skin trouble) nine years after the first indication that something was amiss and four years after beginning with sulphasalazine and methotrexate. All too little and far too late but, as I said, things are better now.

    I now take injected methotrexate plus injected humira, I do the injections myself and have very little bother with side-effects. My hair has thinned somewhat but I'm 60, it was always going to and wasn't thick to start with. Occasionally I feel extra tired for a day or too after the meth injection but as I am always tired that's no big deal. I will do my best to answer any questions you may have about the meds and the arthritis but I am not a doc, just an amateur expert patient. We all get it because we've all got it. DD
  • Mistik234
    Mistik234 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hello Yvonne,

    Thank you for the warm welcome. I feel the love and support already. t69044

    moderator wrote:
    Hi Yemmy,

    Welcome to the forum, it’s lovely to meet you. Any diagnosis for a long term condition is difficult to cope with, I remember a time of going to the doctor being poorly, given instructions and maybe medications, doing as I was told and then being better!

    Then you go with every expectation of the same and suddenly it’s different, you now have to become an important part of a team, all working to minimise the symptoms and maximise disease control and pain relief.

    But you will get there, for quite a time and now during a flare I used to keep a diary, maybe a list or spreadsheet showing, date and time, pain level, activity so when I went to my consultant or GP in between visits they could easily and quickly see how it was going with me.

    You sound like you are doing really well, taking all this on board, to help here’s our leaflet on rheumatoid arthritis

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

    Being aware you aren’t alone was a deal changer for me, I knew whatever problems I had someone else had already solved was quite overwhelming, and I could share without running out of ways to explain how I was feeling. So keep posting, share downs and ups and find some fun along your journey.

    Take care
    Yvonne x

    Your other 2 posts have been deleted because they are copies of this one, your next post will also go into moderation, just so we can catch the spammers before they appear on the forum x
    As soon as we see your post it will be allowed and appear, then other posts will appear as soon as you click submit x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I am sorry, how very hard for you. Nobody knows why the immune system can suddenly start misbehaving, pregnancy is a known trigger, as is a genetic predisposition, but that's as far as it goes. I was born with eczema and developed asthma aged seven, both courtesy of the maternal side, then the paternal side did its bit with the no-psoriasis PsA. Both parents were wonderfully healthy - or as I told them too lazy to make the effort to be poorly.

    The steroids should be helping you feel better in yourself but they merely mask, they do not address the underlying cause of the RA. The meth, hydroxy and sulphasalazine are all DMARDs, they 'work' by suppressing the immune system thus reducing disease activity but it can take time for them to kick in. It is now important to avoid infections as having a reduced immune system means we do not produce symptoms of illness as fast as someone with a properly functioning one so it is possible to become quite poorly before we start feeling ill. Have you been advised to have a flu jab this autumn? It will be free and you qualify due to the DMARDs. Folic acid is a common supplement and is used to help the body deal better with the methotrexate. I went without it for years as everybody thought someone else had prescribed it and can't say I noticed, taking it now has made no difference to anything but it might be worthwhile as I age. DD
  • Mistik234
    Mistik234 Member Posts: 5
    edited 30. Nov -1, 00:00
    I've been advised by my Rheumatologist Nurse to get bot the flu and pneumonia jabs, which I'll be getting in September.

    I do get worried when I'm around people coughing and sneezing, hoping I don't catch anything before I get my jabs.

    Staying positive x
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hi mistik :D

    The flu and pneumonia jabs will only protect against flu and pneumonia neither of which are very prevalent in the summer. It's the usual coughs and sneezes we have to guard against as best we can. It can be hard at first to tell close friends and family that, if they have a cold, we don't want to see them but, in the end, they more or less get tge. Remember that GP surgeries and hospitals are some of the most bug-ridden places. Always use the alcohol hand cleansers that they - hopefully - provide. Supermarkets too. Some (few in UK) provide trolley wipes. If yours doesn't, take your own.

    Having said all that, I don't think I get more colds than the next person but that might be because of my precautions :lol:

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