ANOTHER newbie

emmarose33
emmarose33 Member Posts: 86
edited 12. May 2009, 16:00 in Living with Arthritis archive
Hi everyone. Sorry this is so long.
I am new here. "Quick" introduction - I am 22, was diagnosed with RA 6 months ago. I have a 1 yr old son. My arthritis has been quite agressive and dissicuilt to manage, not helped by the fact that I am still breastfeeding so limited on what I can take. I have been on Diclofenac since my symptoms started, currently 150mg a day. I tried Sulfasalazine for a while (didn't help) and started Hydroxychloroquine. A couple of weeks after I started the hydroxy.. I got a nasty rash all over my body. Was taken off both Sulfa and hydroxy and put on Prednisolone. This helped a lot and I finally felt better!! Was able to be a proper mummy. Went to Florida, felt amazing, stiffness on 1 day. . .the only day there was a rain cloud hovering around. I am weaning off the pred now. Supposed to be weaning baby off b00b so I can start MTX. I realllly don't wanna take it. Mainly because I won't be able to have my beloved wine every evening, and also because I have heard it can make you feel unwell. If I have it I will have injections. Consultant is also considering gold injections as an alternative. Before I was on pred I had about 4 big intermuscular steroid injections and they did NOTHING.
I have been reluctant to join an arthritis forum, as I would prefer only to hear positive stories about how people are coping well with the disease. I hope I can meet some people on here who will be an inspiration to me! I am feeling really down about the illness atm (reducing my steroid dose and everything is flaring up again, don't know if this 'flare' will ever end, it's been going on 6 months!) and I need something to change my perspective on this thing.
Thanks a lot. . . will probably start amother thread with some questions at some point.
Emma xxx

Comments

  • lindah
    lindah Member Posts: 445
    edited 30. Nov -1, 00:00
    Hello and welcome aboard.I can sympathise with the pain and flare ups etc but suffer from o/a myself so meds are different.
    Someone will be along shortly with advice and we all support each other pretty well on here.Cheering up on the chit chat forum and there is also the young peoples forum.
    See you soon
    Linda H
  • lindalegs
    lindalegs Member Posts: 5,396
    edited 30. Nov -1, 00:00
    Hi Emma,

    Welcome to the site and to posting. I'm a veteran of RA, had it 23 years from the age of 27. We've brought up 2 sons and must admit life has been a great struggle at times but most times just great.

    I breast fed my 2nd son till he was only six weeks old but was told I had to stop due to the meds they wanted to put me on - I don't think we were given as much choice in the old days.

    Although life will sometimes be challenging, RA often comes and goes in phases and lovely things still happen when you have this disease as you will find when you read posts from people here.

    Folks on here aren't all doom and gloom and we are, in the main, extremely positive and a wonderful source of support. I wish I'd had a site like this when I started as there are soooooooo many questions we have.

    Look forward to seeing you post.

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • oopie07
    oopie07 Member Posts: 18
    edited 30. Nov -1, 00:00
    hi emma,

    i'm lou also quite new to forum. i am 29 and diagnosed officially with RA last oct although had symptoms for two years. I have been on MTX for 8 months now. Generally i have been good- it helps alot but it can make you feel sick sometimes and play with mood swings. My advice is that its the best thing- if it doesn't suit you they will put you on something else- its trial n error really. Some people say that the injections are better anyway because it gets into your system better. once the drugs kick in which can be upto 3months you will feel much better, although the flares will still happen especially in the crap weather. hope everything picks up for you, good luck and chin up :):wink: louise xx
    emmarose33 wrote:
    Hi everyone. Sorry this is so long.
    I am new here. "Quick" introduction - I am 22, was diagnosed with RA 6 months ago. I have a 1 yr old son. My arthritis has been quite agressive and dissicuilt to manage, not helped by the fact that I am still breastfeeding so limited on what I can take. I have been on Diclofenac since my symptoms started, currently 150mg a day. I tried Sulfasalazine for a while (didn't help) and started Hydroxychloroquine. A couple of weeks after I started the hydroxy.. I got a nasty rash all over my body. Was taken off both Sulfa and hydroxy and put on Prednisolone. This helped a lot and I finally felt better!! Was able to be a proper mummy. Went to Florida, felt amazing, stiffness on 1 day. . .the only day there was a rain cloud hovering around. I am weaning off the pred now. Supposed to be weaning baby off b00b so I can start MTX. I realllly don't wanna take it. Mainly because I won't be able to have my beloved wine every evening, and also because I have heard it can make you feel unwell. If I have it I will have injections. Consultant is also considering gold injections as an alternative. Before I was on pred I had about 4 big intermuscular steroid injections and they did NOTHING.
    I have been reluctant to join an arthritis forum, as I would prefer only to hear positive stories about how people are coping well with the disease. I hope I can meet some people on here who will be an inspiration to me! I am feeling really down about the illness atm (reducing my steroid dose and everything is flaring up again, don't know if this 'flare' will ever end, it's been going on 6 months!) and I need something to change my perspective on this thing.
    Thanks a lot. . . will probably start amother thread with some questions at some point.
    Emma xxx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Just wanted to say a quick hi to you Emma and also to you Louise. :D
  • frogmorton
    frogmorton Member Posts: 29,880
    edited 30. Nov -1, 00:00
    Hi Emma
    This IS a good forum for you really! Full of positive stories and practical solutions as well as wonderful people who will pick you up when you are down.
    Sounds like you have had a rough time of it, but you do have a lovely baby!! :wink:
    Anyway will hope to see you postiong - just wanted to welcome you from me!
    Toni xx
  • mrsdalloway
    mrsdalloway Member Posts: 161
    edited 30. Nov -1, 00:00
    Hi Emma know what you are going through I was diagnosed 6 months after having my first baby 13 years ago. I won't lie to you it is a bumpy ride and not always a positive one, however, you are in the right place. I wish I had found this place years ago as I used to feel as though there was only me in this boat. Everyone on here is a huge source of support and information, sometimes better than the 'so called' specialists as we are actually living it! Welcome.
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello,
    I hope you will find this site helpful. It really isn't all doom and gloom and even the stories that start out looking gloomy often have a positive ending! :) You will find loads of poeple who can answer any questions you have. :D Love Sue
  • oopie07
    oopie07 Member Posts: 18
    edited 30. Nov -1, 00:00
    hi to you too! :D

    i have been browsing for a couple of weeks now reading all the wealth of fabulous info from everyone xx lou :wink:
    skezier wrote:
    Just wanted to say a quick hi to you Emma and also to you Louise. :D
  • greyheron
    greyheron Member Posts: 167
    edited 30. Nov -1, 00:00
    Welcome Emma !

    I'm a veteran of 64 with osteoarthritis so my situation is very different from yours but I'm sure you will find lots of support and advice here.

    All the best
    Wendy
  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -1, 00:00
    greyheron wrote:
    Welcome Emma !

    I'm a veteran of 64 with osteoarthritis so my situation is very different from yours but I'm sure you will find lots of support and advice here.

    All the best
    Wendy


    Hi Emma
    welcome to the site. I think you will probably find a whole mixed bunch of postings, generally pretty upbeat though. Some times people get down, but then this site is a great place to air those feelings safely when perhaps it is difficult to do so in your own life. There are many people on here who certainly are inspirational in what they do and how they cope. What you will get from the site though is help and advice as to how manage the extra difficulties that arthur puts in your path. It isnt always easy but learning to deal with it is half the battle.
    Nice to meet you an you too Lou
    love Gillx
  • suziev
    suziev Member Posts: 252
    edited 30. Nov -1, 00:00
    hi emma

    firstly am 33 ( your making me feel well old with being 22) i got RA after the birth of my son so i'll welcome you to the mummy club. i have gone on to have a little girl, who is going to be a year next month.
    i think the worst part is the part your in right now, finding out and having your world turned upside down isn't fun. however i have a very positive outlook, well i think i do anyway.
    i get on with each day i try not to let my RA get me down but mainly i have to get on with it because of my kids.
    you will find your own path or groove to cope with what life has thrown at you. my advice is always to take the meds after all they are to be taken to help prevent joint problems for the future. i've been on mine over 6 months and i do feel so much better for it.
    i have meet some great mums on here and thats what i love the most being able to reach out to people who does understand rather then those who think they understand!
    suzie
  • emmarose33
    emmarose33 Member Posts: 86
    edited 30. Nov -1, 00:00
    Thanks for all your replies. My arthritis came on so quickley (literally over-night) and I was diagnosed almost straight away, so I think it's taken a while to sink in. I kept thinking this was just a virus that would go away soon!
    Like I said, I am very reluctant to take MTX, but if it really makes you feel so much better then I suppose I could try.
    Looking forward to getting to know you all. x
  • jackie1955
    jackie1955 Member Posts: 632
    edited 30. Nov -1, 00:00
    Hi and welcome aboard Emma,

    I know what you mean about joining a website - you get to read loads of stuff, some upbeat, some downbeat, some downright scary :shock: but the good peeps on here know exactly what your going through.

    I won't give you my history here, because you will be able to look back over past postings and gain lots of info and stuff, but just to cheer you a bit - you can still enjoy a glass of wine even on MTX.
    Moderation is the key :)

    It also helped me to know of some famous people who have RA, because they LOOK fine.......... lovely Kathleen Turner (Romancing The Stone) Claire King (Emmerdale, Dancing With The Stars) and just last Sunday there was a piece in The Sunday Mail about Juliette Kaplan (Last of The Summer Wine's Pearl - glasses, turban, bit of an old bat!), which I thought was a very good article.

    Keep thinking positive, hun, thats half the battle.

    Jackie x