hi i'm new to the site.: hi all i'm new to the site , I... - NRAS

NRAS
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hi i'm new to the site.

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hi all i'm new to the site , I have recently been diagnosed with RA in Sept 2012. I am really struggling with it , I am going through a flare as they call it at present. My meds have not been sorted but do understand this is a long process. I have been on mtx, hydrxycholorine and salfusazine not sure if i spelt that right... All of which gave me severe side effects. So they were withdrawn. I have had 3 steroid injections so far to help as i'm in so much pain. I have RA in my knees, arms , wrists, fingers and right foot. it stated in my right arm and within 6 months it has travelled to most of my joints as mentioned. My consultant is trying to get me on Certolizumab pegol as well as steroid tablets. I'm so frightened , unsure and anxious about it all , how do you all cope? i dont know what really to ask or where to start , but need help and advice from fellow sufferers about the disease and how to cope with it all, please help. Thank you for reading this blogg .xxx

36 Replies
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cris1728

Hi and welcome but sorry that you are having to join us. You will find the people on this site really helpful and supportive as I have. I have not got a lot of experience to offer as I have only had steroid injections in my bottom so far so do not have any personal experience of the many medications which are used to control this disease. I had really good results from the first 2 steroid injections but am starting to get more symptoms now and only had 3rd injection a week ago but this was a reduced dose. I wish you good luck in your treatment and am sure you will get more helpful advice from others on here who have more experience than I have.

good luck and take care

crisxx

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in reply to cris1728

thnak you chris for the warm welcome iknow what you mean about the steroid injections i have had 3 of these in between meds that didnt work for me due to severe side effects they are really helpful for me . I also wish you luck in your treatment and hope that you get some relief and find the right meds to help you. :)

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alibonura

hi welcome to the site

ive had it the dreaded RA for 7yrs but wud be fair to say its been the last 3yrs that it been really bad, only advice i can give you is to try n keep positive ( easy to say i know), take each day as it come, dont be fobbed off you know how you feel just because it cant be seen its still there...

i still get scared about the future but i have a good rumy nurse, since ive been on biologics. Not sure about my consultant dont think ive every met him. !!!

im on salazopryn, lefludomide,enbrel injections once a week (humira stopped working after 3mths also steroid injections) amatriptalyn, naproxen, and pain killers, methotrexate was a no no made me very ill,soz for the spelling mistakes lol, i only joined this site a few wks ago and its helped no end talking to ppl that understand and are feeling the same :)

try to get ur family as well to learn and understand about RA that helps well it did for me.

i cud go on all night but my haands n fingers dont like to type for long :(

plenty of guys on here that will give u advice n help,

hugs Ali xxx

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in reply to alibonura

Hi Alibonura thankyou for your kind support and welcome to the site, i didnt have a very good rumy nurse and have just had her changed by my consultant who apparently wasnt happy with her either long story needless to say she left me with no meds since Dec hence why i'm so bad now. My comnsultant has given me my third steroid injection to help while he sorts out me going on to biologic medication which i have an appointment for on 27th march with my new rhumy nurse. My family are quite good and very supportive but there is only so much you can say to them as they dont have it and dont fully understand . My hubby is fantastic he attends every appointment with me and asks questions he is very attentive and supportive so i'm lucky in that way i guess .

Its so nice to beable to talk to people in the same boat so to speak as myself who understand and that i have some where to come when i'm feeling low or unsure about things to ask the question and to also feel you can help too. So thank you again Ali hugs Lena aka ludlow xx :)

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sylvi

Welcome,sorry you have found us as that means you have ra. It isn't all doom and gloom there is light at the end of the tunnel. It will take a while to get your meds right so try not to worry. If you want to rant and rave please feel free to speak. We are a strong bunch of people and we share the obsurd with our diseases. We see the ridiculous in everything. Sometimes humour is the only way we get through the days. The nras team are all very lovely and they will be willing to help you and so do some of the others. Please feel free to ask any question if you think it will make sense of what is happening to you.

Welcome and we look forward to hearing more from you.xxx

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in reply to sylvi

Thank you sylvi for your kindness good to know i'm not on my own and have some where to come i'm feeling alot more optimistic than yesterday, yesterday being a very low day, all your messages have been a great uplift to me and i'm glad to say my steroid injection is starting to kick in a little relief today. :) xxx

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alibonura

oh and rest lots cos the tiredness is another thing that comes with RA grrrrrrrrrrrrrrrr xx

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in reply to alibonura

ooooooooooooh yes i have experienced the tiredness i had to give up my job due to it as well as the pain and swelling n my joints, my employer was lets say not understanding in his words i have a buisness to run i have not itme for aches and pains we all get. Needless to say i left last week as i feel my health is more important than a 2 day a week temporary job. i am looking to get my self better and my RA under reasonable control before i return to work. So i am trying to take things easy for a while. thnaks Ali :)

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shirlthegirl

Hiya and welcome, i am sorry you had to join this site, but you are in good hands if you want any advice or a kind words, we are all here for each other, well i was diagnosed the same year and month you were, over the last few months i have had so many ups and downs but there is always some here i can chat to, I have also made some very special friends to which i know you will also do, it seem to me that you have had a bit of a bad time of it lately with having to change your meds, if you read some of my blogs i have sent out in the past you will see how things have been for me, but you will also see that having the right medical people around you and staying positive things will get better and this shows in my resent blogs, I'm not saying that i am living my life at the moment the way i want to, but i am seeing more of a improvement which keeps me going, And also i am 49 to :))))) 50 in august, so yes i have a big big day to look forward to :))))) Take care and keep blogging to let us know how you are getting on, There is other people on here that are on the biological drug and are doing really well, Take Care xxx

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in reply to shirlthegirl

hi shirl thank you for your warm welcome congrats on being 50 this year i'm trying to keep my chin up but at the moment going through a really bad flare due to a bad rhumy nurse who my consultant wasnt happy with either but he is working fast to get me sorted as my RA has soread quite quickly in 6 months it started in just my arm and indes fingr of my right hand and now progressed to both arms, wrist ,fingers, hands, knees and right foot and severe at present he has given me a steroid injection to help till my meds are sorted appt 27th march. it was great to hear from you all and has relly up lifted me thankyou. look forward to chatting with you :) lena aka ludlow x

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shirlthegirl
shirlthegirl
in reply to Hidden

Yes mine also got right out of control, when i was diagnosed by my GP i had to wait 3 and half months to see a rhemy, i was on lots of painkiller's, my shoulder's started in June, then it went to my knee's feet achles wrist's elbows and finger's, even the palm of my hands and also my neck, this is in a spare of a few months, what a night mare, so i know what you are going though, Keep that chin up and Take Care xxx

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in reply to shirlthegirl

so sorry to hear what you have gone through, hope you are getting some relief now its awful how we have to wait but starting to realise especially from talking to everyone on here that we have all gone through similiar experiences of this. Nightmare is the word. i will kepp being positive this site has really helped soft hugs lena xx

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eocome to the site too x

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Munchkinella

Welcome my lovely. Sorry to hear you are in pain. Hopefully your meds can get sorted soon. Lots of great folk on here who know what you're going through. Always here to listen. Love Janet xxxx

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in reply to Munchkinella

thank you Janet so kind look forward to chatting with you everyone is os lovely you would never believe we were all RA sufferers lol :) xx

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Hi

I fairly new to all this myself so can't offer much advice I'm afraid...but I can send you support and understanding of how you feel right now.

Hope you get your medication sorted soon and feel much better soon.

Maddie x

PS. What a gorgeous dog!

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nellysgran

Welcome to this site there are a lot of very friendly people here who are all willing to help and answer your questions (if we can). Hope you get your meds sorted soon,

Wendy xx

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in reply to nellysgran

thnakyou Wendy feeloing slightly better today this site has certainly lifted my spirits thank you again look forward to chatting :) lena aka ludlowx

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minxy1960

Hello ,I like you was scared and apprehensive not knowing where ,who, what all the terminology ,drugs ect it's a minefield ,but you know like Sylvi says and she can be very funny at times along with TIlda watch out for her , lol they both make me laugh with there antics...lol no offensive lady's ..... It's not all doom and gloom but it does take flipping ages to get the right meds to work for You . Hang in there the more scared you are the more your pain flares will react,that's what I find anyways.

So for know soft hugs to you think positive

Angie x

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in reply to minxy1960

Thank you angie i agree with the more scared you are the more it hurts as this causes stress and stress aggrevates it, i have tryed to be calmer today and the site and all the warm replys have really made me feel uplifted in myself i dont feel so alone and knowing i have a support net work that i do not have to stuggle to get to helps loads . big soft hugs back to you :) lena x

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Shell1967

Hello I was also diagnosed sep 12 ,I'm so sorry the tablets gave you very bad side effects,I'm sure you will find one to suit you very soon,and lets hope the new drug helps.im on mtx at present and doing well,they say the first year is the hardest as in trying out dmards first etc and I really hope you get on well with your next one.love Michelle xxx

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in reply to Shell1967

so kind michelle its lovely to hear from you, i was told the first year can be quite daunting and i'm certainly feeling it at present . I feel better today in myself having had so many kind responses and not feeling so alone i look forward to chatting with you . big hugs lena :) x

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Firstly i would like to say a big thank you to you all for your kind words of support as i was reading them i was in floods of tears, i have felt so on my own in this and because i am going through a really bad time at the moment very tearful and down i have pain in both wrists, arms, hands, fingers, knees and right foot. I am in wrist splints knee supports and ankle support. I had been left with no meds since december 11th due to my rhuemy nurse taking a blazie approach on my last visit it left me to say the least feeling so rejected and in pain. I spoke to another nurse by phone at the rheumy dept and she told me to complain but unfortunately could not get me in any quicker to see my consultant so i struggled on till I saw my consultant on the 12th March. He was furious that this had all happened and must say has been brilliant, he gave me my 3rd steroid injection on Tuesday 12th March which usually works for me but takes about 2 weeks to kick in.i will be starting the biological on the 27th march so will let you all know how i get on. My family are trying to be very supportive but dont fully understand and are wondering what has happened to their strong willed energetic mom. I have gone from being a really active person to almost house bound, It is good to know you are all out there and there is some where to come and chat.So thank you once again all you've made my day :) look forward to talking, supporting and laughing with each other. :) hugs and love to you all xxxxxx

Thank you Maddie for the comment about my king charles her name is Pippa, pip for short she is 18months old and she gives me so much pleasure and comfort especially now a days she has been a tower of strength through this she never leaves my side,she cuddles up to me when i'm down as tho she knows i need a hug she even fetches my slippers for me hows that for a loyal friend, Just need to teach her to make me a cuppa now and i'll be well away lol :) xxx

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am i doing this right writing my reply on here please let me know if i'm not unsure how to reply to all hope you all get this.xxxx

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Hello again!

Thanks for reply...I can fully understand what you are saying about Pip...I think sometimes they truly are our best friends, I have two dogs and my bigger dog whose very close to me has been a huge comfort, they just seem to know when we're down don't they? I honestly believe if she could put the Hoover over and make me a cuppa she would!!!

Good luck with everything and give pip a cuddle from me.

Maddie x

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in reply to Hidden

hi Maddie ,

your so right what dogs do you have? and what are they called? i love dogs, its true what they say mans best friend or in our case womans best friend lol x i willpass your cuddle onto pip thank you how are you today? Since recieving the amount of replys to my blog yeaterday it has really lifted my spirits today so thank you. By the way my name is Lena i didnt relise everyone used their names on here nice to meet you maddie xx

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Philip
Philip
in reply to Hidden

Why not let your iPhone speak what your writing and then you'll avoid they tpyos,

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in reply to Philip

hi, how do i do this is ?:) my fingers are very sore and swollen at the mo, so sorry for my errors peops. do you have to download the site to the phone first not sure?

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Philip
Philip
in reply to Hidden

Go into settings, general then Accessibility, then speak auto text on, you can change txt size too and a few other things, I hope this helps especially when you write the things you shouldn't lol,

It's no fun when the pain strikes and won't go away, I hope things improve soon.

Philip

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in reply to Philip

thank you :)

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Terrpist
Terrpist
in reply to Hidden

Have the best day u can!

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Terrpist

Welcome coping is babysteps,I don't think of the over all picture it is too scarey ,hang with us we will help

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in reply to Terrpist

thank you i agree babysteps is the word at the moment lol , i shall stay in touch and keep best wishes lena xx :)

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