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Date: 26.07.2010
From: Rachel Moore

Subject: New to the site - recently been diagnosed with RA

Hi

I am new to this site but wanted some support as I feel I have noone to talk to. I was diagnosed with RA a couple of weeks ago. I am 36 and have an 18 month old son and a full time job. Bit of a shock to say the least. I am on prednisone and have just started Methothexate. Not sure what to expect!
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Date: 26.07.2010
From: jill

Subject: Re: New to the site - recently been diagnosed with RA

Hi Rachel

sorry to hear about your diagnosis, the positive thing about it, they can give u the correct treatment that U need, so many of us, including myself, didnt get the correct treatment early, therefore, further degeneration etc.

prednisolone is a steroid, to help rid the inflamation, and gives a form of energy as a bonus....these wont be given to u forever, juswt a short term use.....MTX im on that, have been for 3 years now, im also On ANTI TNF Biologic meds, and I take Enbrel Injections, works well with the MTX(methtrexate).....MTX will prob make U feel tired, and nauseas....normal side affect it seems.....we r all different, and we do react differently to MTX, I tend to get a lot of Absesses in my Mouth, so Vital that cleaning teeth is done correctly......some ppl get mouth ulcers....I dont get that......however, over the years ive now taken MTX, the side affects seem to have worn off a gret deal.....Have been told by my Rhummy that patients on MTX will often feel 'off it'........so its kinda normal to feel a bit or mb slightly unwell....Its a Trade off imm afraid......but better to be on a Drug that will Dampen down the disease.....

If U find that the MTX isnt making any difference to u after 5 months(takes 3 months to kick in) there r other meds they can introduce to u, if your joints r still inflamed....

Remember to Try and stay positive, negativity can make us feel worse, due to the stress it causes us.....learn as much as poss about R.A., then U will feel more in control.....also try anhd find some time to yourself, i know its hard, ive got 5 kids, not bagbies, but never the less they still have their needs etc....and its hard.....

One thing I do want to say to u, and all other newbies, dont listen to the idiots that u will come across from time to time in here, we get ppl that tell us they have found the 'Miracle Cure'....especially when U have just been diagnosed, U may think brill, this person can help u, but they cant Ok.....anyone that claims they can cure u with diet, exercise is talking rubbish....this condition cannot be 'cured' but can be well controlled.......tc
Jill UK
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Date: 26.07.2010
From: Anna

Subject: Re: New to the site - recently been diagnosed with RA

Hi Rachel,

I can sympathise with your feelings. I was diagnosed in January and am only 30. I'm still working full time, it is difficult but I find it to be a great distraction from my RA and stops me dwelling on my illness. What are your main concerns at the moment? If you have any questions, regarding medication or symptoms, or just want to vent some steam, we are here for you.

Very best wishes,
Anna
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Date: 27.07.2010
From: kazzie

Subject: Re: New to the site - recently been diagnosed with RA

hi i am also 36 with a 16 year old and 3 year old and have had r a about a year all i can say is that it comes with big changes to my life i sufferin quite bad and am on mxt injections and bout 6 orter tablets .how are you copin with it at mo
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Date: 29.07.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Thanks Jill, so great to get some support from people who know what I am going through. I am feeling positive today but you do have your ups and downs. I am just feeling really tired at the moment with the MTX buthave had no sickness or nausea which is good.

Thanks for all the advice. I have ordered some books on RA and know there is no miracle cure.

Glad I found this forum, keep in touch.

Cheers
Rach
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Date: 29.07.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Hi Anna

Thanks for your message. I am feeling fine at the moment but main concerns are what to expect on the medication, side effects etc and the future in general but suppose I can ask anything that crops up. I find work a good distraction too.
Glad I found this site!
Keep in touch.
Rach
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Date: 29.07.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Hi Kazzie

I am still trying to get my head around it to be honest and the hardest thing is not having anyone I can talk to as I find people my own age group don't really understand. My partner never wants to hear about it but at least I have found this forum for support.

Sorry to hear you are suffering. I never thought I would get RA this young but suppose you have to get on with it and stay positive. I am hoping the MTX works but reason I am feeling ok at the mo is cos I am on steroids too. Have my next Rheumy apt 6 September so we will see how it goes.

Thanks for the message, keep in touch.
Rach
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Date: 29.07.2010
From: kazzie

Subject: Re: New to the site - recently been diagnosed with RA

hi no prob rach mine came on quite sudden and then it hit me hard i couldnt get out of bed was constantly asleep on my feet .i couldnt even walk down the stairs as it was so bad its taken me about 7 months to try get my meds right s but orther people aint so bad .i have to go hospital every two weeks i cant work anymore as it over taken my life .i try stay postive but its hard when bad .but i have a few orther problems as well which am tryin to get sorted.how are you feelin at the moment and how bad is your ra at the moment
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Date: 30.07.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Hi Kazzie

Mine came on pretty strong too, I had a lot of stresses, we had to move suddenly as landlord wouldn't renew our lease and my partner got laid off work also my kid wasn't sleeping so don't know whether this brought it all on but I was same, couldn't walk, couldn't get in and out of shower or even open a bottle of water, knees, feet, wrists, hands and elbows all swelled, even my jaws were sore. I was crying every morning with the pain. Went to my doc and he put me on 20mg of prednisone straight away and had Rhuemy apoint a few weeks later as it was so bad. He started me on MTX but as its not kicked in yet, I am still on the steroids so feel ok at the mo but think thats due to the steroids. I have been on them a month. I think he is going to take me off them at the next apt in September. Not sure what to expect then. I still feel twinges and pain if I do too much but think its masked with the steroids. I am just constantly knackered at the mo. I think it does be really bad if you have stress or if you do too much so its important to rest and try to be stress free - easier said than done when you have kids.

Stay strong and hopefully some of the meds will kick in. I am still trying to get my head around it to be honest.

Keep in touch and thanks for the mail.

Rach
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Date: 30.07.2010
From: Jill

Subject: Re: New to the site - recently been diagnosed with RA

Rachel Hi again.....its sad that your partner wont listen to u.....this makes a huge difference to our coping mechanism...mb hes turning his head away for fear of thinking U as very crippled by R.A.....I use to thikn Only old people got this....ive had Arthritis since my early 20s, it got worse for me in 2002, hospitalised for 6 weeks, 7 corrective surgies later, and on MTX and Anti TNF bio meds, which has helped a lot....less flare ups(still get flares ups) but they dont last asd long as b4, or come as often as b4....so that is good news too......I struggled for years to accept my health probs, and altho im perhaps having Less joint pain, other health probs have come becos of this disease, im currently struggling with Pernicious aneamia, testing me for another Immune disorder in the gut....I have Gastritis too, and that is y the Pern aneamia is with me, have to have injections for life to make sure I get B12 in my system....was too low, and this causes severe fatigue....oh well, there ya go, lol dont panick, cos we r all different, and what one person has, doenst NOT mean another will have it....mines due to the Gastritis(inflamed stomach Lining) anyway....On a Good Note....PLEASE ask for support if U need more, we will always give support to ppl, and also maybe U need to sit down your fella and have a serious chat with him.....get him to go along with U to your Rhummy appointments, so that he sees at first hand what U r going thru.....he needs to know this bring rotten fatigue(worse thatn tiredness) he needs to understand taht U need support.....I have also had to cope with 5 children, youngest is 11 at mo.....its been hard, and hard on them too, especially when ive had surgery........keep ya chin Up OK xxxxxx
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Date: 30.07.2010
From: kazzie

Subject: Re: New to the site - recently been diagnosed with RA

hi rach snap we had just moved my partner got ill so had had to leave work so i put my down to stress but am gettin better now thanks to all meds am on .its just hard not live a normal live when got young ones i cant plan anything in advance if ok on the day we go lol.were bouts are you livin .luckly my partner is great and does a lot for me
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Date: 02.08.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Hi Kazzie

Still feeling good at the mo. Have to go for two weekly blood tests now for the next 6 weeks cos of the MTX. Just don't want my son to have to do things for me so I'm determined to try and be well and keep positive. My partner does loads for me too and is great with our son, he is just not a great talker. We are living in Jersey, Channel Islands at the mo, I'm from Dublin and he's from Derry but with this illness we are thinking of maybe moving back home as we would get more help and support there with our family around us. Where bouts do you live?
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Date: 02.08.2010
From: sandra lowe

Subject: Re: New to the site - recently been diagnosed with RA

hi Rachel, i have RA and was 21 when i got it and had a baby to care for too, and that was 32yrs ago and felt very alone no one really understood, (my hubby was very good but suffers with depression so it was hard to joggle my emotions and his when he was having bad time) their was no forums like this to shout and rant when everything was getting out of control!!! so take this life line and use it as im still struggling with things but have great friends here xx
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Date: 03.08.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Hi Sandra

Good to hear from you. Can't believe you have been living with this for 32yrs. At least we have this forum for support!

Keep in touch.

Rach
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Date: 03.08.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

Thanks Jill. I will try to talk to my partner. Am feeling really tired at the mo. Good advice about bringing him to the next Rhuemy appointment, I don't think he belives me half the time as I am feeling pretty well (bar the tiredness)at the mo. Sorry to hear about your ailments. My mum has RA and gets the Vitamin B12 injections too, she said they have made a hell of a difference to her with the tiredness etc. so hopefully they will do the same for you.

Keep in touch.
Rach
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Date: 03.08.2010
From: Lynn B

Subject: Re: New to the site - recently been diagnosed with RA

Hi Rachel I think its worth taking your partner with you on your next rheummy app. My Sister was the same said she didnt know wot i was complaining about and that i looked fine, Until she came and listened to wot he said, now she cant do enough for me. t.c.xx
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Date: 04.08.2010
From: Rachel Moore

Subject: Re: New to the site - recently been diagnosed with RA

That sounds good Lynn, thanks. I will defo take him to the next appointment in September.

Rach
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