|
|
|
Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 27
|
What do I do now :( My 17 year old daughter came home with swollen knuckles yesterday. I am in pieces. What do I tell her? She has seen me struggle with RA all her life. Are treatments better now? Have things improved? Much of my problems now are because of the early damage - Do the new drug treatments help to improve that? I just don't know what to do next. I just want to cry. I hate this disease !!!!!!
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hello dear Sally
First of all, don't panic until you have been to see the GP and, if he feels it is necessary, the Rheumatologist. Easy for me to say, I know, but it could be other things and not RA.
I don't think you should worry about treatment until you are sure but yes, the treatment nowadays for newly diagnosed is very positive and offers much more hope of a normal active lifestyle.
If and it is a HUGE if, she does have RA (which God forbid) then it is vital that she is seen by a rheumatologist IMMEDIATELY, even if you have to pay and take her privately. The earlier RA patients are seen and put on appropriate meds the less chance there is of joint damage.
I think this is something we all fear for our children, but please, please, go to the GP asap and then take it from there. We are praying that everything is fine.
We are ALL here for you anytime you want to talk.
Much love
Jeanxxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
|
1. what Jeanb says
2. the new treatments are amazingly effective - i'm living proof on Humira
3. what a horrible shock and worry, i'm so sorry, take care of you both
much love, franky
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Sally, Oh, you must be feeling so anxious and upset - anyone would, but Jean is right, things have moved on an awful lot in the treatment of RA.My consultant told me that if ever there was a "good" time to be diagnosed with RA, that time is now. None of this will really help you to feel any better, but once you`ve seen your GP things may be clearer. Take care, & thinking of you, Kathleen x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
|
This must be a dreadful thing to confront, if it turns out to be RA. But treatments are so much better nowadays, and should stop the RA in its tracks. I know it must be really hard to think your daughter has it too, but it some ways you'd be able to help her and understand what she is going through. I was lucky enough to get treatment started early, and so have not really suffered from joint erosion.
Please go to see her GP asap, and then push to see a consultant, if GP thinks it could be RA.
I'm sure there must be other conditions that have her symptoms, so it's not a done deal. But I do realise how worrying it must be for you both.
Lyn
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
|
Dear Sally,
I was horrified for you when I read your post. It is one of our dreads that our children inherit this dashed condition. I hope that she gets an appointment soon and that it is not what you think.
Eleanor x
|
|
|
|
Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 27
|
Seen the GP he seems to think it is RA. He's sending her for all the blood tests and then we will go from there (obviously straight to a rheummy). She doesn't really want to talk to me because I feel so guilty. She wants to go to medical school and is worried she may not be able to hold a scalpel mainly because most of my problems are in my hands. Off to try the anti inflammatory gel and tabs for now until results back.
Thank you for your support I will let you know how we go but I think a stressful weekend is going to follow
Sallyx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
|
Oh Sally, this must be so worrying for you all. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Oh Sally, how awful for you and your daughter.
I suppose it's inevitable though that he would think of RA as you have it, let's hope the blood tests prove him wrong.
Thinking of you both,
Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
|
sally sending u hugs,hoping not RA good gp fast acting for her. lv melly cuddly cats make my world seem so much more fun
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Sally, so sorry you have to go through this with your daughter, I sincerely hope that it turns out to be something that can be treated easily. Thinking of you  BARBARA
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
|
Hi Sally,
So sad to hear your news - I think it is my greatest fear that the genetic link could mean my children might develop it....but...what everyone has said is so true things and drugs are different now. My consultant is so upbeat about catching it early pre damage and how the drugs can pretty much give you a normal life. I can imagine the guilt but you are not responsible - you didn't choose this. Someone suggested getting a private consultation and this can be a really good idea to get things going. I found out where my local NHS consultant also practised privately, went to see him, got the diagnosis and got on some drugs within weeks and then switched to the NHS (because of the drugs costs). If I had waited for the first NHS appointment with him it was 9 months away!!!
Try and be brave, your daughter will need you but she will need time and space to come to terms with it as well. Thinking of you. Jo
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
|
Dear Sally- I feel so inadequate as I really can't think of what to say, but will pray for you and your daughter.
Love
Maria
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
|
So sorry to hear this Sally. Sending big gentle hugs to you and your daughter.
Nina x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
So sorry to hear this Sally - I agree with advice already given. I was diagosed 3 years ago and it is the norm now to start 'early aggressive treatement' ie, straight to DMARDs etc with a view to avoiding the permanent damage many people have suffered in the past. I don't want to sound patronising but have you read the NICE guidelines recently - it confirms all this.
Will be thinking of you and hoping the results don't take too long.
Julie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
|
Hisally
Sorry to hear this,lets hope it is something very differant but try now to worry(not easy) because this will make both of you poorly
Hugs and lots of luck
Audrey X
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
|
Hi Sally
this is so awful for you I pray it is not RA
wait to see what the doctor has to say
good luck to you and your daughter
Mary L
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
|
Oh Sally,
I feel the despair for you, this too has always been my nightmare for my daughter...however, I was diagnosed when I was thirty and the treatment plans have much improved.
In the great scheme of things I have joint damage, but compaired to some it is minimal.
I was nursing for years with ra and it was only when I developed oa in my knees I had to call it a day.
With respect for your daughter and her medical training, fore-armed is the way to go, with the right treatment plan, I feel that she should still keep her goals in her sights and in a way she will have more empathy with the patients that she encounters on her lifes journey.
Good luck to both of you and do not take whimsycal health care for her at this early stage, you both need to be focused and determined, her future depends on it,
Much love to both of you Ellie x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Thinking of you Sally and sending (((((strong hugs))))) I can understand how worried you must be and hope you have lots of support for YOU too, as naturally your feelings are about supporting your daughter.
Please keep in touch with us all, there is always someone here for you xxxxx
I still work full time in social healthcare (management, which includes practical support too) and have found there is lots of practical and advisory support out there and in place eg: through access to work and discrimination laws.
One thing, I am absolutely convinced of, is that a positive mindset is absolutely crucial, please keep posting and like Melly says well done to gp acting fast, see what medical experts advise. Perhaps, if there does appear to be a long wait for an appointment your local MP may be able to help support to speed things up and, as Julie already mentioned, reference the NICE guidelines.
Take care Sally, thinking of you and your daughter, stay strong,
Much love, Liz xxxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
Oh Sally, I am SO sad for you that you may be facing this fear.
BUT please try and wait and see what happens as it may not be RA.
Make sure she is seen as soon as possible.
I have had RA nearly all my life and I see nowadays they treat it very aggressively from the beginning and there are good reasons for this.
Much love and many prayers,
Amanda
|
|
|
|
|
|
|
