RA and your Heart

lindalegs

My Rheumy has asked me if I'll take part in a study which looks at how RA affects the heart. To be eligible you have to have had RA for 10 years or more and be over the age of 50. I'm 51 and have had RA for 24 years.

The study is over a 5 – 6 year period. I may be given Statins (lowers cholesterol) to take on a daily basis or I could be in the group which takes a placebo (harmless pill) daily. I have to attend hospital for an initial assessment, blood tests and joint range tests, which are repeated every three months. (I can't drive and am unable to use public transport. :roll: ) If anything adverse is noticed in my blood results they won't tell me or my GP :shock: (he hasn't got access to the study). Three of the side effects of Statins are muscle pain, headaches and can DAMAGE THE LIVER :shock: (I'm also on Mtx which can also DAMAGE MY LIVER :shock: :shock: :shock: ).

I've read all the information he's given me and I really don't want to take part….. but I feel so guilty saying no.

I want to publicly apologise on this forum to all you youngsters who're starting out with RA because I'm not doing my bit to help protect you …….sorry….. I just can't face it.

I already know the effects of this RA study on my heart ……it weighs heavy with guilt.

Luv Legs who's wishing she'd never been asked in the first place

woodbon

Hi Linda,
I'm sorry, I always find it hard to say no, but thats the right thing for you to do if you've given the information good thought and consideration, which it is obvious you have. Medical trails have to be done and lots of people like doing them, but any doubts and I think you will worry yourself into thinking you've got god knows what!

I spent seven years working with research scientists and I'm married to one who used to be in research! They are human and understand the difficulties. I did take part in a trial to get HRT patches licensed in this country, but they were already in use in America, otherwise I'd have said no.

Don't do it just to please someone else or because you don't like to say no!

This is just my personal opinion and I fully admit to being a coward, but I thought it might help.
Lots of love Sue xx

frogmorton

Oh Legs

you dont need to apologise about this at all :shock: No way!!!

I dont think any of us would want anyone to take risks with their health on our behalf unless THEY wanted to :?

Please stop feeling bad - bet you can't but you must try.

You are not letting any of us down Linda

You take care

Love

Toni xx

suncatcher

I dont blame you not wanting to take part. Dont feel guilty its an individual decision .I know i certainly would not take part in it if it were me being asked. from joanne

frogmorton

HELLO Joanne

Missed you in the cafe - I was not in at the time - how the devil ARE you??

Toni

(Please forgive me Legs for hijaking your thread) xx

annie_mial

Linda, I was asked a while ago do to something similar. I decided that considering the problems I have had over the last few years, I could not justify deliberately taking risks with my health.

I did not think it was fair either to my family or myself and on a purely selfish note I would like to have a little problem free time if at all possible.

..........but the guilt is still there........

Annie

kathbee

Linda, for nearly half of your life you have had to contend with RA
and presumably you have been on potent drugs for all or most of that time.

I think you have enough going on in your life.

I am on MTX, Leflunomide and a host of other things, probably like you, and also I have been put on statins.
I would not want to wonder if the statin I was taking was
the real thing or not as this is also a dubious drug.

Therefore I dont blame you for not being sure about the
trial and if it was me I would be saying no.

You have to put yourself foremost and whilst its great to
know you can help others I think at this point you have
to greatly consider yourself and and your family.

that's just my opinion, but I think your liver and other organs
will be telling you for goodness sake say no.
Hope you are ok and not worrying too much about this
and it causing you more stress than is necessary.

Annie, please dont feel guilty, you too did the right thing.

Love Kath x

frogmorton

[
..........but the guilt is still there........

Annie[/quote]

Put it away Annie

Honestly

Love

Toni xx

lindalegs

Hi Sue, thank you, yes that does help.

Hi Toni, thanks, guilt is a horrible emotion ......and you hijack all you like

Hi Joanne, glad I'm not on my own in refusing.

Hi Annie, I feel just the same as you do ......and my hubby thinks that refusing is the right decision for me.

Hi Kath, I'm listening to you .......and my liver and other organs. Thank you.


You're all helping to make me feel alot better about my selfish self....... my family are important too.

Luv Legs

skezier

Hi Legs,

I think they should feel guilty asking you actually....... I also really do think you would be better to say no and not run the risk of taking it. Don't feel guilty at all and I don't think your decision is selfish based, just wise Legs. ((( ))) Cris xx

fayrose

Blimey LL, how on earth can you feel guilty turning that down?. :shock:
Enough is enough and it sounds as if you've had more than enough. I'm all on your side. No doubt you rattle drug-wise already and to voluntarily stuff yourself up wiith yet more poisonous jollop, even in the name of science ............ oh, nonono .

Take good care of whatever health you've still got xx

valval

lindalegs wrote:

My Rheumy has asked me if I'll take part in a study which looks at how RA affects the heart. To be eligible you have to have had RA for 10 years or more and be over the age of 50. I'm 51 and have had RA for 24 years.

The study is over a 5 – 6 year period. I may be given Statins (lowers cholesterol) to take on a daily basis or I could be in the group which takes a placebo (harmless pill) daily. I have to attend hospital for an initial assessment, blood tests and joint range tests, which are repeated every three months. (I can't drive and am unable to use public transport. :roll: ) If anything adverse is noticed in my blood results they won't tell me or my GP :shock: (he hasn't got access to the study). Three of the side effects of Statins are muscle pain, headaches and can DAMAGE THE LIVER :shock: (I'm also on Mtx which can also DAMAGE MY LIVER :shock: :shock: :shock: ).

I've read all the information he's given me and I really don't want to take part….. but I feel so guilty saying no.

I want to publicly apologise on this forum to all you youngsters who're starting out with RA because I'm not doing my bit to help protect you …….sorry….. I just can't face it.

I already know the effects of this RA study on my heart ……it weighs heavy with guilt.

Luv Legs who's wishing she'd never been asked in the first place

i think you should not do it the chance of doing damage to your self sounds quite high if they kept your gp informed i could understand it a bit more but sounds risky and if it so hard for you to get there now just think how hard it would be in 5 years

chris7

Oh dear Legs

Sorry you have been put in this position. You have obviously given it serious thought but it does sound so risky. Please don't feel guilty for refusing. It seems bizarre that they would ask anyone to risk their own health do this without liaising with a GP?
Try not to beat yourself up about it, you already give so much support and advise on here which does mean such alot to so many people.
take care
Chris

angel1

Sorry Mr Rheumatologist, but you can`t have her! Our need is greater than yours right now, and she is invaluable on this Forum. She more than does her bit for RA already.

Legs, no guilt sweetie, it gives you wrinkles!.............Much love.....Ange.

dorcas

How very dare they put you in such a position :x :shock:

please, please do not feel guilty about saying 'no'. Your own health has to come first and what with the ravages of arther and coping with the side effects of meds and continual pain, you have more than your fair share of things to deal with.
The last thing you need is to take part in any 'trial' that might jeopardise your health or worse. :!: :roll:

Don't be guilt tripped by this Linda......in fact your decision may help others to think carefully and do what we are not very good at...and that is putting ourselves first and having the strength of character to say no.

Irisx

suncatcher

frogmorton wrote:

HELLO Joanne

Missed you in the cafe - I was not in at the time - how the devil ARE you??

Toni

(Please forgive me Legs for hijaking your thread) xx

im sorry i had to leave the cafe marigold got loose and i fell over in a pile of manure sorry about that im ok surviveing ill pop in the cafe to see how you are joanne

frogmorton

joanneprice wrote:

frogmorton wrote:

HELLO Joanne

Missed you in the cafe - I was not in at the time - how the devil ARE you??

Toni

(Please forgive me Legs for hijaking your thread) xx

im sorry i had to leave the cafe marigold got loose and i fell over in a pile of manure sorry about that im ok surviveing ill pop in the cafe to see how you are joanne

HI Joanne!!

You have to watch that manure....it's probably Yak though - he can be a bit dirty :oops:
Love
Toni xx

lindalegs

Just to say thank you all for your replies - I read them last night just before going to bed. You've all made me feel so much better and there are many kind words in your posts :oops: thank you for those too.

I slept well last night and I think it's because of the reassurance that I've made the right decision I received here.

This forum and all the lovely people on it are such a good sounding board and everyone's opinion is so valuable.

It's good to cyber talk.

Luv Legs

dolittle

Hi Legs,
I feel the same as the others. Don't go on a guilt trip. I know we all feel bad about the younger people who have this dreadful disease, but I don't think they would want you to put YOUR health in deliberate jeopardy.

Think in some respects we are all subjected to 'trials' of medication and sometimes I feel I am part of some sort of research project. I have 14 medical conditions now .. a lot medication related - so I've told my OH I'm now suffering from medicationitis.

Sorry you've been put in this position and, if I were you, I'd just pluck up the courage and instead of saying 'no', say 'I'd rather not' and then switch off.
(((( )))))s
Do

lindalegs

Thanks Do,

Think you're being a bit greedy with 14 medical conditions :roll: ....time you dealt out a few .....particularly to your enemies.

Take care and (((((hugs))))) for you.

Luv Legs

ritwren

LL, you've had lots of replies but I've only just seen your post. As others have already said, there's absolutely no need to be feeling guilty. It's really bad that you're feeling guilty when you absolutely have a choice and have to make one which is right for you. You are coping with so much and as has already been said, you more than do your bit all the time on here. I hope now that you can rest easy and don't worry about it any more.
Take good care
rita

page35

Well Legs i for one am glad your not doing it
and as for not doing your bit to help us younger ones starting out with RA, well that's just not true.
You Linda have helped me more than you know.
so please please don't feel guilty, not one bit.
love Sharon x
who still occasionally climbs fences

tkachev

Dear Lovely Linda Legs,

I am glad you have decided not to put further stress on your liver. There are plenty of ways to help younger sufferers with advice on this forum. I have learnt so much that I would probably never been told if not for talking to peeps like you. And you have been so helpful in so many ways.

Take care
Elizabeth

lindalegs

Well Rita, Sharon and Elizabeth, all I can say is thank you so much for your lovely words and everyone else too .....you must all shhhhhh now 'cos otherwise I'll be on an ego trip :oops: :oops: :oops:

Lots of love to you all, Legs XX

PS Sharon, I think you've climbed more than fences in your RA fight.