diagnosed with r/a, first rheumy appt soon - advice please

twinney

Hello everyone.
Got told last week that I have R/A, my rheumy appt came through yesterday for next month, which I thought was quick!
Already have o/a in both hips and spine, and suffer with IBS, Pernicious Anaemia, and a rubbish digestive system.
My body just doesnt like medication of any sort!
I have read about the side effects from the drugs that they give you for R/A , that I am really frightened to death!!!!!!!!
My hubby bless him has poor health himself and I don't want to bother him with my fears. My family don't really understand either
Do I bother the rheumy with all this info or do I just hope for the best and get on with it!
Sorry to be a pain ( literally) but am really fearful of the future , it is consuming my every waking moment.
Your help and advice would be so appreciated please!
Thank you
lynda

skezier

Hi Lynda,

Sorry your having to deal with all this but side effects don't always happen and try not to get too scared by it all, I know easy to say.

I think you should tell him, though mine knew when I first saw him cus he actually red my notes (that sound normal but not here ) I think its good your appointment has come through so quickly and maybe you might write a list so you can take it with you and remember what you needed to ask as well. Good luck though and well I hope it all sorts out for you. Oh come and let us now what he said though please. Take care Cris

breane

Hi Lynda, It can be scary when first diagnosed with RA and all the different drugs there are for it. I have both OA and RA and I guess I have been lucky so far that the drugs I am on have not given me any bad side effects.I take Hydroxy,Naproxen,Omeprazole and have just started taking Tramadol again.I have found the rheumy nurse to be very helpful and on my first appointment with her I took a list of all the questions I wanted to ask.The nurse has been more of a help to me than my rheumy consultants as I seem to see a different consultant each time whereas I get to see the same nurse each time.Let us know how your appoinment goes.Take care,Breane.

elnafinn

Hi Lynda

I have sent you a little pm which may help a little.

Luv
Elna x

frogmorton

Hi Lynda

Tell the rheumy all of it coz he/she wont want to make anything else worse.

Often those of us with inflmatory arthritis can have other things too which are relevant - i think the stomach issues is fairly common with some of us.

Most meds muck me about something rotten, but like breane I havebeen ok on hydroxy.

Good luck and write a list

love

Toni xx

twinney

Hello everyone.
Many thanks for all your kind help and advice, it was appreciated.
Thank goodness for this forum, everyone here are brill!
Best Wishes
Lynda

Wonkylegs

HI lynda,

welcome to the forum but I'm sorry you need to join our club

I would suggest you take a list of things with you that you want them to know .... more info they have then the more they can help you.

Also take a list of questions .... it is too easy to forget in the heat of the moment and the first appointment has so much to take in too .

you might want to take someone with you so that two of you get a chance to remember what is said ... although I know that is not always possible.

as for side effects, the only way to know how they will affect you is to try the meds .... I haven't found a way to predict the good or the bad. I can say that if you persevere the side effects sometimes go away. Other times it is amazing how well you can feel with a med that worried you to death .... so don't be put off by the lists of side efects ... they are not always as bad as they seem

best of luck
wonky

bellini

twinney wrote:

Hello everyone.
Got told last week that I have R/A, my rheumy appt came through yesterday for next month, which I thought was quick!
Already have o/a in both hips and spine, and suffer with IBS, Pernicious Anaemia, and a rubbish digestive system.
My body just doesnt like medication of any sort!
I have read about the side effects from the drugs that they give you for R/A , that I am really frightened to death!!!!!!!!
My hubby bless him has poor health himself and I don't want to bother him with my fears. My family don't really understand either
Do I bother the rheumy with all this info or do I just hope for the best and get on with it!
Sorry to be a pain ( literally) but am really fearful of the future , it is consuming my every waking moment.
Your help and advice would be so appreciated please!
Thank you
lynda

Dear Lynda, If it helps, I think everyones first diagnosed RA is very frightening. I remember it well my local surgery couldn't offer me a referral for 18mnths - so I went private. I moved to a different area and now in the NHS loop.
I think it takes time to get your head round your new condition, but with help from support nurses, occupational therpay and anyone else who will listen - you will cope better than you imagine at the moment.

After a couple of years, I became a lot more confident about living with RA and some days I foget its there, but not a day without pain, however you can be the manager of your pain once you have talked a few things over with your consultant. Last October I took a challenge and went a walking holiday in Tuscany, I bit of more than I could chew. However, I managed 3 walks out of 5 and found myself 1900mtrs up a mountain - what a buzz, I love walking. You will get to that stage keep asking for help also I found www.arc.org a good website for info about RA. Bless you , it will never be easy, but keep asking for help.

Cassie x

nuttynana

Hi Lynda

have to agree with many of the other comments - it is quite scary when you are first told, and often there is some denile. But I think what a lovely OT told me once has kept me going - listen to your body and do what it is telling you! If you hurt - take some pain relief, if you feel tired - take a break - only you know you!!!

I totally agree about the med side effects and about sometimes just trying to get through the effects - I did with the salaz, rotten side effects to start with, but after about a week it calmed down and the benefits outweigh the problem. Have a really good rheumy nurse who encourages 'staying power' and with her support I have tried lots of meds - some good, some not so good (for me). We are all so different and react in various ways.

Rather like with your OA you have to be Lynda first who just happens to have OA and RA rather than I have OA and RA and my name is Lynda. I went for ages having RA who happened to be called Hazel - not any more. You just have to control it rather than 'it' controling you.

Good luck
Hazel x

twinney

Thanks to you Cassie and Hazel.
Only just read your posts, I do so appreciate your help and advice, .
Cant wait to get my rheumy appt over and done with then I can at least move on and get on with things.
Being positive is the way to go , I have a life to live and a new baby granddaughter who is one week old!
Cheers
Lynda

dolittle

Hi Lynda,
I agree with everything they have told you. It IS scarry and you get 'information overload' about the condition and the drugs. Relax and take it all one step at a time. Remember - drug companies have to put all this information on their info. sheets to 'cover their backs' as my rheumy said ... believe a tiny bit of it until you've got proof about how something affects YOU.

I agree with write things down before you go. I did an A4 sheet that looked like a CV, listing out everything I had experienced, how I felt, my fears .. the lot. The new rheumy I saw was over the moon, said it would save her so much time and she was going to ask ALL her patients to do it. Don't be afraid to ask questions and make sure you get a decent answer - make them share their knowledge with you.

Chin up, luv - it's not all gloom. You'll cope with it just great. These folk here are a wonderful help and support. So remember - you'r not alone with this.
Dolittle

twinney

Thanks Dolittle for your advice too.
At least now I can go to my appt feeling a lot more confident, to be able to ask those questions I so need answers to.
Kind regards
Lynda