feel really bad

marooned

good morning everyone hope you are all well, as you no my daughter is 23 and has RA, on the last visit to the consultant she prescribed steroids as the inflamation was not going down , well for the first few days she felt great was riding again and felt normal, she has got up this morning and can hardly move her hand/wrist is so swollen it looks difformed and so is her knee she was in that much pain she couldnt get up in the night to come and get me, she was devastated this morning. i no we must get used to this but it is so hard if i could take the disease myself i would, i no there is probably people a lot worse so sorry for going on, i am currently trying to find a specialist to see if we can do anymore she is on MTX and Sulph as well as steriods
thanks it helps when i can talk on here
xxx

hileena111

Hi Marooned
Sorry I cant help...I've got OA and back problems.
It must be so much worse watching someone you love suffering. I know what you mean about wishing it was you.
Sending {{{{{{}}}}}}} No doubt someone with RA will be along soon to give you some advice

Love
Hileena

barbara12

Hi Marooned
I am so sorry your daughter is suffering so much, like you say you would rather it be you, I have OA so I cant comment on her drugs, can she not get an emergency appointment with the rheumy, I am sure someone will be along soon to maybe help a little.
But you keep talking to us, it will help you alot to get all this off your chest.
I do hope you can get the help she needs very soon.
Please let us know how you get on.
Love and loads of hugs ((((((()))))))
Barbara xx

dreamdaisy

Poor girl, I empathise. If the meth, sulpha and steroids are not enough perhaps it's time for a drugs review by her rheumatologist. How long has she been on these and at what dosage? She may also benefit from stronger pain relief too. I hope things improve for her soon. I wish her well. DD

angel1

Watching someone we love - especially your child - in pain is heart breaking.

I too am OA, so won`t comment on her drugs, but I feel that you are doing the right thing in fighting for the very best person for her to see. From what I have learned on the Forum, this sounds like a flare, and hopefully will settle very soon.

Smother her with your love, and encourage her to talk about how she is feeling from day to day..........Ange.x.

salamander

hi Marooned, You say are you looking for a specialist. Is she not under a consultant already? If so, I would ring him. When I was on Mtx I had a dedicated specialist nurse. Has she not got one?

When I have been in the same kind of pain I've had a depo shot which has got me out of trouble. They will probably give her one. If you haven't got a consultant I suggest you take her to the nearest A&E where they can get the on call rheumatologist to look at her. She shouldn't be left suffering this much from the sounds of it.

Also, when I was really ill last year I didn't think I was entitled to ring Adult Services at the council to get the Occupational Therapist in. They can come in when there is an emergency and bring aids round to help your daughter do things like get in and out of bed etc. I wish I had as suffered for weeks not being able to basic things like get off the loo. We always think these things are for other people but they are for your daughter too. You can just ring up your council and ask for Adult Services OT department. Don't let them put you off.
Hope some of this helps.

wibberley

Hi Marooned, it's easy to overdo things when feeling so great on steroids. Unfortunately, the steroids can stop working instantly if pushed too hard as I found out after ponytrekking on my honeymoon! I could barely walk off the plane on touchdown back in the UK and my first phone call wasn't to family....it was to my rheumy from a phonebox at Manchester airport!

I'm sure your daughter will get to the stage she can ride again, but she really must let the meds take full effect first. Also she mustn't feel too downhearted - it's still early days and there are many more drugs out there to try and there will be one out there that is right for her.

Lois x

marooned

thanks everyone yes she is under a consultant at the kings mill hospital she has rang her nurse she wasnt available, this is a lot of the problem we are looking at a possable transfer to the derby royal or getting a private consultation just dont no what to do ?
she has been on the mtx since about feb/march.

tillytop

Hi Marooned

Your daughter has all my sympathy - I have been there and understand how she must be feeling. You have had good advice from the people who have already posted and I hope, by now, she has managed to speak to someone in the rheumatology dept for advice.

It sounds as if your daughter needs both immediate help (perhaps a higher dose of steroids or a steroid depo injection in the short term to try to bring the inflammation back under control) and advice about what to do in the longer terms as it seems from what you have said that the current meth and sulpha regime is not working well enough.

If no joy with the rheumatologist, would the GP be able to get in touch with them? If a depo steroid injection is prescrbed, that can be done at the GP so she might get it quicker that way. Just a thought (and apologies if I repeating something which has already been said).

Please do pass on my very best wishes to your daughter - I am thinking of her (and of you too)!

Love Tilly xxx

frogmorton

Hi Marooned

I know what you mean about wanting to take the illness and have it yourself.

You are a lovely Mother to care so much for the poor poor lass.

I was going to say - she could maybe do with a jab into the joints concerned? That might just help her?

I hope someone calls soon and has some ideas how to help her.

I am glad she was riding again albeit briefly. I hope she will be up there again very very soon.

Love
and hugs for both of you

Toni xx

michaelamarah

Hi!

Im 23 years old and have RA too! I know exactly how your daughter feels with regards to not being able to get out bed. I have been diagnoised for 4 years although we think I have had it since I was young because I was always crying saying I had pain and the doctors just kept saying it was "growing pains" I have been on MXT and Im still on steroids and Humira (Humira is a life saver!) I could not walk before I was given that. I find it helps to talk on here occasionally to people and my mum feels exactly the same way as you. You should suggest to your daughter to sign up on here, when Im in pain or feeling low its nice to talk to somebody who knows what pain your in

I hope your daughter starts to feel better! Keep me posted.

Love,

Michaela x

marooned

thanks everyone, the rheaumy nurse called yesterday and if she ios no bnetter ion two days she has tyo go to hospityal and they will make her a splint for her hand, she is a little better today so fingers crossed
thanks again

tjt6768

Hi Marooned, I have a 22 year old daughter and I wouldn't know how I would react if she had the pains and troubles I have, it must be awful.. I really sympaphise with her, tell her there are people on here that will always be willing to chat, I only found this place a few days ago but it's been great. I know what the pain in the hands is like, I have sero-neg in the wrists, only a recent diagnosis but has gotten worse real quick. I also have OA in my spine, knees and left hip.
Best of luck to you both and hope she's pain free real soon...


Tony