I ventured out yesterday with mum to an Avon party that a family friend was hosting. First day out this week so was in good spirits.
meeting new people and explaining why I am in the wheelchair and the kids have a poke at the knee splints is becoming quite normal.
I took it quite hard coming round to having RA but have always been quite positive on the outside.
A lady in the group started asking a few questions more than others and then pipped up that she has RA, automatically thought she would be like you guys, nice and understanding etc.
No!!! She went into a rant about MTX had given her cancer and how all the drugs I am on make cancer more likely and telling me I hope the pain relief now is worth cancer etc just wanted to cry.
I know all our drugs have effects and I was only on mtx for a little while but what she said has really gotten to me. Can't help thinking about!
Silly old bag.
Written by
Marnie87
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What a silly ole cow! she probably does'nt have a clue what RA is! I have had so many people say they have the same as me or they cured their Ra with diet, I'm afraid you have to tune out. Also if you did'nt take the drugs how much worse would it get?
I have caught many people out, they think they know what they are talking about but they don't. My Aunt is on Methotrexate about 20 years, and it is a tried & tested med, I never heard any increase in cancer. It is normal to be anxious putting toxins in our system, but all diseases require medication, I wonder if you had Parkinsons or Crohns, what that ole biddy would have to say, keep shaking/ having the runs , because the meds are worse??
Really Marnie, things will get better for you, and you will have to learn to say to all these peeps, 'I'll mention that to my Consultant at my next appointment' thats what I usually say to the 'OOOHHH I would'nt take that/ my Aunt has a recipe for a cure/ Red meat causes that etc etc, I am so annoyed at the ignorance, IT IS AN AUTOIMMUNE disorder.
Stay warm , and calm, you will be improving daily,
I just couldn't believe her sitting there why I tried to explain to the kids in a nice way what was wrong with me and she's then sayi over me about cancer, infront of a 10 year old who lost her grandad to cancer rcently. Just wanted to shout shut up!
Why do people think if the old wives takes cures work that there would be millions of pounds spent on research?
How old was this unpleasant woman? I would have told her to shut up as she isnt a doctor and doesnt know better than yours!! What a vile woman she sounds.
When you are a bit more confident you will stand up to these ignorant people - my normal response is "i didn't know you have a degree in medicine" that normally shuts them up.As for MTX causing cancer i've never heard that and i do research meds before i start them - in fact i thought MTX was a type of chemo used to fight cancer!.
Stay strong and just ignore them as Gina says you will get better
Tell them to go and get stuffed. It don't half knock your confidence when silly old biddies say things like that in front of your children,My daughter would soon tell them now to f off. My daughter is how i used to be loud and proud.
Your under the best doctors and as julie says didn't know you are a doctor. Another word to tell her is piss off.
Don't it feel good when you can have a rant. Take care,sylvi.xx
Silly cow!!! seriously if she did have a degree in medicine then she went to a crap uni
Mads is right MXT is a low form of chemo (to fight Cancer) hence why there are slight hairloss/nauesa side effects!!! No she is wrong, 10 yrs ago when Anti TNF first came out (and when i was put on it as part of a trial ;-0 the docs thought that there may be a slight increased risk that it could reduce your own natural cancer fighting cells (T cells), but now that their understanding of the drug has increased they have realised that you are only at risk of the drugs bringing on a cancer if you have previously had a cancer (however they do still put some people who have had cancer on it if their RA is bad enough). It is true that putting ANY medication in to your system is not the best for you, but actually having any illnesses and letting them go un treated far far outways that risk!!!
Babes at the end of the day one third of ALL people will end up with some form of cancer (normally mild) it's just one of the sad facts of life, regardless of them ever having taken ANY medication. That woman just needed to shut up and get on with buying some Avon
Hopw this helps you calm down?
Love
Ella xxx
Hello Marnie, don't let that put you off going out again - i read up on metx also before i went on it and like the others found that a high dose is used to fight cancer.
That woman wasn't talking to you out of concern. She was using the opportunity to sprout an ill informed personal opinion in an attempt to make her look important. Silly woman.
You done really well going out, dealing with the inquisitive kids so well done for that.
So annoying! As Ella says chances are some people will end up with cancer (and possibly would whether or not they had RA / took the meds etc). That's just the way it is with people with cancer risks, but doesn't mean everyone with RA / on the meds will end up with it. There are higher risks of all sorts of things with the meds we are on, but as many above say you need to weigh up the risks (and there is probably more a certainty that without any meds you would end up really disabled than the chance of getting some of the complications associated with the drugs).
I've also had some of those 'smart' comments - someone at work asking me if my rheumy has told me RA can burn out because in her words 'it can, you know'! Said I'd ask him next time I see him when he expects mine to burn out!
And for anyone saying a dairy free diet works for RA, well I have evidence it doesn't at all! I've been entirely dairy free for the past 3 weeks in support of my son who has had to eliminate it, and my RA has probably been worse than it has been all year! I think most people just have complete ingorance about RA - and I suppose we can't blame people for not having full knowledge as I didn't know much about it before I had it - although at least I didn't go around advising people on it either when I knew nothing about it....
Cant believe that woman.said that to you, support and encouragement is needed not negativity!. take heed of ella's much more positive words xx
What a very stupid woman - makes me think she doesn't have RA and doesn't know anything about it. The number of people who think it is OA and you get it when you are getting older makes me so mad.
I did read somewhere that RA can burn it self out but can't remember now where I saw the article. Did mention it to my consultant and he just went Hmm.
So no help there.
The dietician at the hospital told me to keep dairy in my diet for the calcium so I do have yoghurts, skimmed milk, cheese etc.
Without the medications, I don't know where we would all be - confined to a hospital bed I should think. I have not heard of MTX causing cancer - I would have thought it would have the opposite effect as it is an anti cancer drug which was discovered to have the helpful side effect of being good for RA.
So Marnie, ignore those who are so ignorant and stay the positive person you are. We are all here to support you as much as we can. Love LavendarLady x
Hi Marnie - just to affirm what all the others here have said - what a horror this woman must be to say sfuff like that to you whether she has RA or not?! She should have shut her mouth and focused on the Avon products!
On a much more minor level someone came to visit us yesterday and made me feel stupid too. I was telling her about my past year (she has come up from South so we don't see her much) and she said "oh I've got that too - do you eat nuts - well then stop eating nuts and I'm sure it will all go away for you too!"
I questioned her a bit and right enough she described having had symptoms of some kind of arthritis - maybe inflammatory I don't know. She said that one consultant had tried to tell her that it was an autoimmune disease and she needed to take drugs to keep it at bay but she said no and went to an allergy clinic - was told to avoid nuts and that's what she's done - and guess what? Now all the joint pain has gone - apart from when she has nuts by mistake when she can guarantee it all comes back like clockwork. She looked at my hands and said they looked quite normal to her (I"m still taking Pred and show very little swelling) and she was horrified to hear that I was doing through the mainstream NHS rather than trying to tackle it through diet as she does.
But I've tried all the special diets, don't eat gluten, don't eat dairy and was eating nuts mainly for calcium until yesterday! I felt really confused by her visit - it's hard enough trusting doctors without people coming in with their own personal stories and expecting you to change your whole life and turn your back on medicines and those who prescribe them.
She said rather contemptuously "oh I suppose you always believe doctors then - unlike me? Why do you need a name for your problems so much - I'm not bothered - I just want to be healthy and get rid of the pain through food but you're obviously different to me?" implying that she was hugely superior because she's thin and glamorous!
It made me feel terrible so I completely relate to your experience Marnie. If the rheumy says I have RA when I see him a week on Thursday then I will take the medicine he advises for me because you have to trust people who spend their whole lives thinking about this disease and seeing what it does to people first hand! Next time you go out take a crutch and threaten anyone who dares to spoil your enjoyment please!
TTxxx
in reply to
Tilda,
This individual is playing a psychological Game called 'Blemish' - it's obviously her modus operandi! So all of this is 'her stuff' not yours, stay with your own wisdom and what your body is telling you - it's real and not some kind of dietary failure on your behalf!
I am a coeliac with lactose intolerance and my RA doesn't get any worst or better if I have an accidental wheat product or milk, so the lady ad her nuts just sound nuts
Hope your ok now she's gone.
I would of told her yes I listen to the professionals, mainly because I know that I was just happy to know what was wrong with me.
Lots of love.
M
X
in reply to
Tilda, my boss is like your friend, worse i think.
Will try all sorts of dodgy medicines etc off the internet because she doesn't trust doctors and spends a fortune at the health food stores and allergy clinics. In the time that i know her she has had any amount of self diagnosed illnesses including ra which i have and underactive thyroid which another staff member has and she got rid of both through concoctions she bought online - one of them was bleach which she ingested. She is completely nuts - she sighs and gives me the pitying looks and tries to find me alternatives when i update her on the drugs i take.
My feeling is that neither your friend nor my boss have ra but they do have some sort of illness going on thus their need to feel superior and knock our confidence because we put our trust in doctors. Your friend may be thin and glamorous but obviously she is jealous of you why else would she want to make you feel bad.
You do need to find out the name of your illness so that you can get the correct help. You are taking the right approach Tilda and nuts are good for you - full of protein.
Hi Marnie,
We are so taken aback by this kind of rudeness that it can be difficult to come up with an adequate rebuttal at the time!
It really helps to come up with some one liners that can be deployed in this kind of situation - especially as we often can't move away from the person without some kind of assistance [grrr!]
You've been given some good examples already but here are a few of my personal ones -
'Fascinating' [turn away to address someone else]
'I never discuss my health with civilians'
'Goodness you are bitter - did you know that bitterness negatively affects your health?'
And if it's a bitchy remark - 'Miaow' says it all!
I think everyone on here has answered your questions really well, and hopefully helped to reassure you, but just thought I'd highlight the first paragraph of our article on methotrexate written by consultant rheumatologist Robin Butler:
I would also like to quote from that article, "it does not have a significant anti-cancer or immunosuppressive effect, but it does modify the abnormal immune processes which cause RA".
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I am assuming this is a flare?
I am struggling to sleep
What is like being \"normal\"?
Well i am not surprised
Why am I more sick on MTX then when I first started? does it build up in your system?
