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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Thank you again for your replies:
Barbara - nice to hear from you. Sounds like you have your hands full too!! Good luck with the anti- TNF drugs - will be interested to hear how you get on. Am planning to chase up my consultant about my anti-TNF drugs soon, as it is nearly two weeks since my last appointment and haven't heard anything more - just anxious to get started on them now.
Jackie - good to hear your encouraging words about the forum. Am feeling much better at the the moment, but think it is largely due to the steroids which I suppose only "mask" the underlying problems.
Will be good to keep in touch with you both more through the forum,
Thanks again and best wishes,
Rachael.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Rachael welcome to the forum, I'm Bev and have had ra for 15 years I also started with it in my thirties with two young children, now aged 22 and 20. This forum is really friendly and helpful I have been a member of nras for 4 years and it has been a godsend, i wish i had joined earlier.
Bevxx
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Rachael Welcome to the forum, as you have already seen it is a place where you meet people who have a mine of experience and advice which is invaluable. It is also somewhere you can have a rant and people really understand where you are coming from. My name is Sue, I am 57 and have been diagnosed 5 years. I started on Enbrel in January and have nothing but praise for it as it has transformed my life. I still take 20mg Methotrexate but have now stopped Sulphasalazine. I hope you soon get started on the new treatment and that is successful for you. Look forward to hearing more from you. Best Wishes Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Rachael, and welcome to the forum - sorry I`m so late, but we`ve been away on holiday and only just got back. The forum is a great place for info and empathy, so do keep posting. I`m Kathleen, live in Durham, married to Nick, with two sons and two little grandsons. I`m currently on humira. Kathleen C x
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Rank: Newbie  Groups: Registered
Joined: 5/17/2011 Posts: 6 Location: liverpool
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hi rachel,
I am suzanne and will be 38yrs old in a couple of weeks, I have 2boys aged 5 and 6yrs old. I was diagnosed nearly 2yrs ago now, 1st year was pretty awful and strange that as soon as diagnosed disease rapidly increased (maybe in hindsight was suffering longer than i thought). I started to respond as mtx increased along with a few steriod injections. Last september i was asked if i wanted to take part in a trial using tocilizumab and noticed a massive improvement almost straight away. I attend hospital once a month for about 5hrs and recieve the drug intravenously. I have now come off mtx altogether and was told i was in remission about 5mnths ago. I have been able to return to nursing and generally feel great. I do have occasional flare ups but nothing like the way i felt last year. I hope to stay on the drug but in september a case has to be presented to my PCT to see if they agree, i just keep my fingers crossed.
I log on to forum most day(dont usually post anything) but value all the useful information and advice
hope all is well with you
suzanne xxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Suzanne Fantastic to hear you are doing so well on the one, news like that is really good  Hope all goes well for you. Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 1/27/2011
Posts: 68
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hi Rachael I am mags and was diagnosed with ra at 23 when my son was born apparently through the trauma of birth.I am now 56 and have three grandchildren who I love dearly and life goes on dispite the pain everyone on here seems to cope and always finds a way around things you will get good adviuce hear so keep in touch.take care Magsx
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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Hello, and thank you to Bev, Sue, Kathleen, Suzanne and Mags for your replies. Sorry I haven't replied sooner. I just seem to have been very busy recently (mostly with children's end of school activities) and don't seem to have had a chance to go on the forum much!
It's great to hear all your comments and reassuring (in a funny way) to hear that other people have also had RA with at a fairly young age in a similar situation to me. That does seem to be one of the really good things about the forum, in that when you do have moments of feeling sorry for yourself you realise that you're not alone or the only one in that position. I don't know about you, but I do find having RA at a young age, I do worry about how things will progress in the future, particularly in terms of joint deformities in my hands. I think however this is probably largely due to my OT background and perhaps seeing the more severe effects of RA, but I do find myself getting a bit preoccupied with this at times! Good to hear about the positive effects of the biological drugs though.
I've recently had some mixed news about my possible start on anti-TNF drugs. Have finally got appt. through for next week with Rheumatology nurse, but turns out that this is not to actually get the drugs, but just to have my DAS score repeated to make sure I meet the criteria, before she applies for the PCT for funding. Turns out I was a bit naive thinking it could all happen so quickly! I was a bit worried about whether I will now meet the criteria, as the steroids have really helped - although obviously are only "masking" the actual disease activity - however the nurse assures me that she will take this into account, and at least I am prewarned as to the right things to say now or noises to make (ouch!) 1!!
Anyway, thank you once again for all taking the time to reply - I really appreciate it!
Love Rachael.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Rachael
STOP worrying. The chance of really bad deformities in joints are lessening now as they hit hard with the drugs when you are first diagnosed to stop it going down that road. I am 48 and was diagnosed in January 2009 and yes it is a worry that I have another 19 years (thank you Mr. Cameron) to work before I can retire. I know that there is a possiblity of ill health retirement if things get really bad but I put everything to the back of my mind and think about getting through today.
Yes, unfortunately, you do have to have two DAS scores to fit the criteria for anti-TNF drugs. It is a shame you have had the steriods but when you go think about your bad days and answer accordingly. I am sure you will pass as they would not have suggested it if you did not meet the criteria. It is a bit of a waiting game unfortunately. You will then have to wait for the funding to be approved, then wait for the drug to be delivered, then wait for a nurse to come out and show you how to adminster it. In all it took about six weeks for me. I am sure your children will keep you busy for the next six weeks so hopefully your time will fly by. Just remember to pace yourself accordingly and make sure you have some "you" time otherwise the steroids will start wearing off and then you will be back at square one.
Keep us posted on how you get on.
Jackie
xx
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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Thank you Jackie for your positive words - can be difficult to keep it all in perspective at times!
Agree that the steroids are a disadvantage in some ways, however I don't feasibly see how I could have managed for the 5 weeks or so without the them until seeing the Rheumatology nurse. I just know now not to underestimate in any way how i am feeling or how difficult things have been, and am prepared to fight for this treatment if necessary!
Anyway. thanks once again for your encouragement!
Love Rachael.
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Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
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Hi Rachel,
Welcome!
I am the same age as you and also have young children and when the RA is flaring, it is NOT fun!
I haven't yet tried any biologics- i feel in a dilemma about them really as my rheumy and our close Dr friend both assure me they are 'safer than MTX' nowadays.
Not sure exactly what the criteria is except one must fail two or more DMARDs......
Anyway, just to say I am here for support especially with little children. RA and I have almost grown up together as I was DX as a child myself, at nearly 9years...
Love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Rachael Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS! I'm Lyn, married to Mike, we have four 'kidults' Abby 23, Ian and Jake 18, and Louis 16. We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA 23 years ago and have since run the gamut of medication (although more options are popping up now and again thankfully!) and had several surgical procedures along the way. Currently on Enbrel (been on Biologics for 8 years), Prednisolone, Methotrexate and Naproxen and a wagon load of pain killers! But heyho... Look forward to getting to know you Lyn x
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Rank: Newbie  Groups: Registered
Joined: 6/11/2011 Posts: 8 Location: Lincoln
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Hi Racheal
m Judy or officialy Judith lol
I know exactly what you mean, i was diagnosed wwith RA at 22yrs i started out on gold injections which was fantastic, i was on them for 2yrs and it controlled the ra fantastically up until 2005 when things started going bad again. im 46yrs now but I was a nurse up until 4yrs ago when my RA got a really bad hold of me, Like you i was on Sulfasalzine, then methotrexate, then embrel now on humira. I found NRAS a couple of months ago and i have done my fair share of moaning on down days and the folks on here have been a fantastic support.
So welcome and i hope you feel better soon, we are always here for each other so keep posting ok
Love Judy xx
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hello Racheal Welcome to the forum, you will receive lots of support on here and friendly advice. Very sorry to hear that you have been having a tough time x My name is Lou, Im 37, married to Keith & have 3 cats (bit unlucky on the child front but thats another long story!) I was diagnosed with RA two and half years ago, I'm currently taking Methotrexate by weekly injection. I really hope you find the forum supportive. Take Care Lou xx I love people who can make you smile even when you do not feel like smiling. x
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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Hello Amanda, Lyn, Judy and Lou, Thank you so much for your introductions and messages! Can't believe how many people have responded and how friendly and supportive people are! Good to hear from you all, and realise that there are lots of people in the same situation as myself. I went to the Rheumatology nurse yesterday to be reassessed for anti-TNF drugs (in our area you have to have two DAS scores over 5.1 a month about and have failed two DMAIDs (hope I got the right initials there!). Despite being on steroids which in effect has masked my recent flare, she feels that I should definitely qualify for them and is now applying to the PCT so hopefully should hear in approx 2-3 weeks. Was a bit bewildered that they gave me a choice of drugs - I just presumed each area would have a preferred option. I have said that I would go for whatever they recommend for me, but if they are all much of a muchness, would prefer not to see the needle when injecting (chicken!) - hence will more likely go for enbrel as in an epipen type dispenser. Anyway school holidays now, so enjoying not rushing around quite as manically - although having to deal with my children fighting instead! Off on holiday next Saturday which will be a really nice break. Thanks once again for all your messages, Love Rachael
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Rank: Advanced Member Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Rachael Hope they get approval for the Enbrel quickly. In the meantime have a great relaxing holiday. Best Wishes Sue
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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Thanks Sue - can't wait for the holiday now!!
xxx
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