Yet another newbie!

Having been diagnosed with RA last year, I am now just being screened for Tb so that I can start TNF treatment.

Have not experienced flare ups as I have been in constant pain for 18 months, I am however looking forward to some days where my pain is managable and getting the 'old' me back!

I do feel very alone in my condtion, and work collegues find it hard to understand, because you can't really see whats wrong with me!!

Looking forward to hearing from anyone who understands where I am coming from! :o)

31 Replies

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  • When on steriods its not the "old" you get back...its the "young" you :)

    At work, you need only tell them thats closest, thats all that matters really.

  • Thank you!

    I am just coming off my steroids, I just would love my sparky self back - happy to be older, I suppose I have just beome very dispondent!

    I am hanging on!!!

  • I do apologise, never thought.

    New to the lobby I guess I need to be more thoughtful before I post, sorry.

    Hope all works out for you

  • No I am sorry - my comment was supposed to be jokey - not nasty!

    I am not old in years, but 'old' as in how I was two years ago! I am busy working mum, recently married and love my job - but I have suffered with so much pain that I have lost my spark and just want it back!!

    Take care :o)

  • Nice to met you

    Sometimes its trial and error with meds but hopefully you'll start to feel better soon and get your spark back!

    Good luck with the anti TNF -hope it works well for you

    Julie X

  • Thank you!

    I will keep everyone posted!

    PJ

  • Hello new people.. welcome xx

    .People without the condition often lack understanding/ compassion as they cant see what is wrong with us.. it is a problem... im slowly coming off the 2nd lot of steroids in 2 years.. its two years since my diagnosis in November!

  • Ah Bless!

    My steroid didn't really work - although I had a big injection just before my wedding day and danced all night! - But it was so short lived - I am trying to be positive.

    I am glad I joined here, as I feel better already! I don't feel quite as lonely!

    Thanks everyone :o)

  • Hello,

    wow lots of newbies today :)

    Welcome, I'm so glad I found this site, I started my ant-tnf 10 weeks ago and i feel soooo much better already, I look forward to hearing how you get on and when you blog to tell us how much better you are!

  • Great - I am glad you feel better, I sure will keep updating how I get on, Like wise I look forward to hearing your news

    :)

  • Hi Wiliby,

    What is ant-tnf please?

    New to ra and all that!

    Cheers x

  • Sorry - Anti - TNF is Tumor Necrossis Factor - a drug usually given when all else fails!

    Hope this helps - there are about 6 or so different drugs, pretty nasty side effects, but some poeple have had amazing resilts, but like all RA drugs/treatments it is trial and error

    Hope your ok!

    Pen

  • Welcome to this site,you will find a lot of lovely people on here, I am glad i joined. I have been glad to have someone to talk too as i find the medics are so busy and i find plenty of good ideas and advice here. People cheer me up and listen when i have a moan,its a relieve to know i'm not alone.

    I'm not slating the medics as they do a good job,its just that they are sooo busy and they don't suffer with disease like we do on here.

    Bit of a tip for those of you who suffer with your fingers, I put on my leather fingerless gloves on in bed and i find my fingers are not so bad today. I'm sure wool gloves will do the same.

    Sylvia. xx

  • Hello!

    I am interested to hear where you got your leather fingerless gloves from - my hands are not good and I use them all the time for my job, thanks

    Take care, and moan away - I do all the time!!!

    Pen

  • My leather gloves i got were from new look, that was last year. If you get the damart catalogue you will find thermal gloves in there for people with arthiritus, they are about £10. They will keep your fingers very warm.

    Sylvia. xxx

  • Here is the website for damart its damart.com.uk think thats right. hope this helps

  • I would like to say wecome to you!! This site has really helped me. When I can not sleep I read how other people are coping with RA and it really helps my mood. I have been onTNF medication for the last year but have had many infections. So I have had to stop and restart the TNF, so it has been a hardship. I wish you good heath and positive results from your medications. Do not give up and try to keep moving. Take care,Hope

  • Hello!

    I have felt insoired even though I only joined yesterday - this beats facebook anyday - everyone on here understands what we are going through!

    I have had such a tough 18 months and now I can see a light! I have to say that I am very scared about starting TNF, I am a first aider in a school - lots of bugs! I have to have a meeting with my boss to make sure I am safe and my health is not compromised, but I love my job, and that has really been the thing that has kept me going!

    I look forward to 'chatting' again!

    take care Hope,

    Pen

  • I would like to say welcome to you!! This site has really helped me. When I can not sleep I read how other people are coping with RA and it really helps my mood. I have been onTNF medication for the last year but have had many infections. So I have had to stop and restart the TNF, so it has been a hardship. I wish you good heath and positive results from your medications. Do not give up and try to keep moving. Take care,Hope

  • Hi and Welcome.I struggled to express what was wrong and how the pain was affecting me as you say you cant always see what is wrong .This sight has been so helpfull and is a great source of support.Look forward to sharing with you .

  • Hi!

    Hope you have had a good day!

    Nice to 'meet' you!

    Pen

  • Dear Pen I was afraid to start the medication too. But, it has been the only medication that has decreased my joint pain. It is a medication that needs a lot of thought to make sure the risks are worth it to you. I have had some infections and that means I have to stop the TNF for two weeks .Then another time for one week. The pain relief is worth the side effects for me at this time. I am wishing you lots of good luck and positive thoughts! Take care,Hope

  • Dear Pen I was afraid to start the medication too. But, it has been the only medication that has decreased my joint pain. It is a medication that needs a lot of thought to make sure the risks are worth it to you. I have had some infections and that means I have to stop the TNF for two weeks .Then another time for one week. The pain relief is worth the side effects for me at this time. I am wishing you lots of good luck and positive thoughts! Take care,Hope

  • Hello Pen

    Hope you get as much support and help as i have from coming here. I was diagnosed 10 months ago and i don't know if i will ever come to terms with it. I haven't got the right medication yet but somehow i think i will get there. This site has given me loads of reasons to suppose that it will all be ok in the end - painful now and again but the medication eventually becomes right. Most useful is the advice and knowledge that other people have, i use quite a lot of the info to talk things through with my consultant.

    I can imagine starting the tnf is scary but i assume that there will be constant blood testing etc when you are on it so if anything is amiss they will catch on quite quickly.

    All the best

  • I know how you feel - I am angry, frustrated and spend alot of time crying - Blood test at the mo are every other week, but my veins are knackered so am going back to monthly!

    Try so hard to be positive and then I will try to hold a pen, a knife or untie my shoes and the reality hits me hard - the comments on here have been wonderful, and I don't feel quite so alone!

    Take care and hope to catch up again :)

  • Hi PJ68,

    Nice to meet you.

    When I was working - someone always 'knew someone who has it' - someone 'who has it worse than you' - someone 'who ate _ _ _ or took _ _ _ and it cured them' !!

    If your work associates dont understand your condition you have to feel sorry for them, they must live life with their heads buried in the sand !

    It's been my experience that every day is different, today I can manage to do x, y, z but yesterday I found it impossible. It can be so changeable.

    Best of luck with the anti-tnf.

  • Thank you!

    great advice - and very true - every day is different!

  • Hello to all, I am another newbie not just to the site but to RA also. Just found out 4 /12 months ago. I was on steroids for 4 months and now on Relifen and Plaquenil. Just wondering what other are taking. I keep seeing TNF, what is that? I have lots of pains and until now I didn't associate it with RA until after the fact. I just knew is was always something flairing up, my elbow, my shoulder, my wrist, etc. Do other get steroid injections in flaired up joints? What can I expect upcoming? I'm scared.

  • HI Sahnnonpenny,

    welcome - hope you're ok!

    I have just finished my steroids - I had two injections, but apart from allowing me to have a lovely wedding day, they didn't do much for me!

    I take plaquenil, sulfasalazine, inject methotrexate and take folic acid! I have had a bad run of luck and nothing really seems to have worked the way they planned! So I have just been tested for TB and if all ok, will start TNF (tumor necrosis factor) I will try Cimzia first.

    I have been scared for 18 months - and I am so gald I found this site, I don't feel so alone - hope it helps you too.

    As for pain - I just try to cope, but now know that its not the way it should be, hence the next step!

    take care!

    Pen x

  • I found this website about a week ago. I am so amazed at how supportive everyone on here is!! Such a blessing. I was finally diagnosed 9 yrs ago, though I suffered for several yrs before. It is so encouraging to read the posts. Everyone seems so connected. I guess it is the condition & realizing that there are others. WOW. Thanks guys. Have a very Blessed Painfree Day. Linda

  • Hi and welcome!

    I love being on here, and have found such comfort in other blogs!

    Glad you found the site!

    Pen x

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