For TIlda and other people who get compared to other people's RA

For TIlda and other people who get compared to other people's RA

Hi there I'm adding this photo its a snapshot I took from a medical website, I can't remember which, however I found it a good explanation as my rheumatologist had already explained I came in the 5 in 100 people , I have had too many other people compare there RA to why can't I just get on with it like they do. You know the ones who come in the 20 in 100 who only have very mild symptoms.

I used this photo to show a work college why I'm not like her and why I don't just get a niggle in fingers or the odd aches and pains as this work college explains hers, she really thinks I'm over reacting my wheelchair is a con, etc etc

So I thought this may be useful for TIlda with her friend comparing her daughter and for anyone else subject to ignorant people.

I know any form off RA is bad and in no way do I want this to come across as mines worse than yours kind off thing, I just found it helpful myself in explaining the differences so wanted to share so others could too

Hope everyone sleeps well tonight

Sweet dreams

Julie xxxx

49 Replies

  • Hi Julie

    Thanks for that, I'm sure lots if pros will find it useful!

    Good to see you back, how are you???? How's the transfusions going??

    Will pm you tomorrow,

    Take care Joanne x

  • Hi Joanne,

    How's you?

    Long story short!

    The rituxmab was stopped as it wasn't reducing my DAS enough, I was switched to tocolizimab which reduced my DAS to the lowest it had ever been however along with that came a major allergic reaction! I had huge skin ulcers that have left big holes and scars, and had to be dressed and packed daily by the nurse, I spent the first few days unable to see as my face and eyes swelled that much they were shut, I had blisters in mouth, tongue and scalp for about two weeks I was dizzy confused and to be honest don't remember them two weeks apart from what the hospital told me and family, it caused stomach and bowl problems which even though it was August when I had tocolizimab I've only just got this controlled and that's still taking anti sickness pills three times a day, the only good side I lost all my steroid weight but almost four stone in a few months isn't good and as you can imagine I had no energy etc, total nightmare.

    So now my DAS is back to sky high my uveitis has flared really bad but only in left eye , so I can still see out off one eye thank god for that.

    But I started cimzea two and half weeks ago so fingers toes all crossed hoping this fifth biologic is my drug without problems and I can finally get some ease.

    How's you doing looking forward to a catch up :)

    Take care

    Julie xx

  • Thank-you Julie. For what it's worth I consider my RA to be relatively mild (until it's not!) and I would never compare one person's RA with another - except if I felt mine was much more lightweight I might make that clear - which compared to most people's here I think it is, yours especially. But as you say all RA is horrid and the drugs are not a breeze either so I think we all know here that it's best to just give each other the benefit of the doubt if a person needs support or are in pain - that's what so good about this site really.

    It's good to read this but I won't send it to her because she's obviously going through enough without me banging on about RA. I suppose she hit a nerve because I suspect my late mum would have been quite similar to the way she is with her daughter had she been alive now - and would have implied I was just a bit too preoccupied with it or it was all the product of neurosis - she was a wonderful woman but usually lectured me rather a lot and set a lot of store by stoicism. The thing is if I bang on or try and tell people about RA sometimes it more to educate them in general than it is to talk about myself. I currently only have one friend I really talk to about me when things are bad - and she's been away abroad for the winter. I've been there for her ever since her only son died a few years ago so we look after each other really and she's made comparisons with her situation and mine more than once - although I don't think they begin to compare of course. Tilda x

  • Sorry I forget not everyone has iPads and can just enlarge everything.

    This is the link you, it's actually very helpful for lots off conditions and treatment choices etc.

    I know what you mean about not comparing I don't like to compare mine is worse than so n so's etc however sometimes when its someone who has apparently got RA is totally drug free, has no symptoms just a twinge in there little finger and they look and speak to me (us) like we're over reacting complaining etc etc.

    Its good you have a good friend, sue my friend who I lost to cancer would also compare her condition to mine all the time, well infact she always said I had the worse deal sue was twenty years older than me 54 so she always said at least she had chance to live a longer life pain and suffering free where I was looking at years off pain disability etc, I always considered her case to me much worse than me, not just because off it being cancer but because the cancer was riddled through her bones etc and I knew how much my bones ache from joint pain so couldn't imagine her pain and suffering.

    And glad your hubby is supportive too I don't know what I'd do without my OH he is amazing.

    Take care

    Julie. Xx

  • PS Can't read it as too wee - any chance of a link as well?

    PPS - that is SO annoying of your colleague - I would be the opposite! Tilda xx


    Sorry here's the link x

  • It's really interesting at a glance thanks so much Julie. Unfortunately I have to try and build another powerpoint for our work today because the last one became corrupted (I feel a bit jinxed just now!?) so I'm making myself wait until that's over before I read it through properly. Tilda x

  • I found it very interesting hope you do. Hope you get your pp sorted soon.


  • Hi I would love a link to this page too, and as Tilda said I too would never compare myself to others. RA effects all in so many different ways and not nice for any of us!

  • Did you see the link above hun xx

  • I do find myself comparing and I will tell you why. My best friend has RA and within a few months got Humira and is normal, working full time and out socialising all the time. I got mine severely and two years later still struggling and she is still doing the job I did.

    She does not and cannot understand what is wrong with me and thinks I am either a hypochondriac or putting it on. I have now stopped telling her anything about my illness but it's more hurtful as she actually has this has ruined a good friendship as I feel she is insensitive boasting and sending me texts about their great 70 s night out they went on, I couldn't walk that day never mind get dressed up and go dancing so yeah I do compare and ye am ashamed of judging at times, just had to admit it!!!!

    I managed to read the link and it's very good, thanks., hugs Axxx

  • oh Allanah dont upset yourself hun, your friend seems to have forgotten what its like before her meds and takes for granted how lucky she was getting her anti tnfs so quidkly some sufferers have to wait months and years to get them .

    It sounds like she is the one who judges you been as she cant understand why you are so ill, shame on her.!!! You are not judgemental just envious that she can get out and have a good time with out pain and so are we all when we see people enjoying life with no pain we would all love to do this but unfortunately some of us have to sit on the side lines and just watch.

    So dont ever think your judgemental you are a lovely bubbly person who brings joy to all on this site , dont you put yourself down you should be proud of yourself for still fighting on suffering the way you do. I wonder if she would be so judgemental if you swapped places for the day how would she feel then. People like this really annoy me. I really am fed up of the way people judge us! I have the same with relatives and friends i just dont talk about it to them now, i always change the subject or walk off. I dont care what they think as they dont care about my feelings . so you take care hun soft hugs LEna xxx :))

  • Hi Alanah,

    So sorry you've also got one off these so called "friends" I've also got a so called friend who does this she don't have RA however I get phone calls not to ask how I am but have you been to work today, if she calls when I'm bad she always says well you look ok too me! She phones up to tell me there all off clubbing or what a great night I've missed and I really do need to make the effort and get there, most clubs they go to I can't even get in (in my wheelchair) and if I could I don't think I could get past the getting ready stage before falling asleep :(

    Hope you have at least one friend who understands you xx

    Take care

    Julie xx

  • I consider myself to have a relatively mild form (now that the drugs are working anyway, couldn't peel potatoes before!!!!) but I met an elderly lady last week who said she had suffered from RA for 59 years and didn't take the drugs because she didn't like the idea of all those chemicals. She also believed people should be stoical about these things, just put up with it and get on with it!!. She then went on to say however, that she had never had to work so could rest whenever she needed to, she couldn't walk far, used two sticks, and all her knuckles were plastic!!!! I'll keep the drugs and my own knuckles thanks.

    Everybody's different!


  • So true everyone is different and 50 years ago they didn't have the drugs available so I can understand her coping so not wanting to start drugs if she had coped without.

    I do think if we all didn't have work. Family's to look after etc then maybe we would be better controls, I know when I've had a few months off work towards the end I started to feel better my esr and crp were still high but I didn't have the stress etc .

    We are all different Helen I totally agree :)

  • Hi all, I dont judge but have been judged and my answer to this is dont waste your time with people like this they just arent worth your time and energy . Your energy could be better used on things like physio, hydratherapy and exercise, so why waste it on negative people. I have had family laugh in my face and say am i trying to get out of working so i can claim benefits, i would rather be at work thanks never claimed anything in my life. or another one they've got arthritiis and they just take some pain killers and get on with it you need to get a grip and get on with it too all this commotion over a bit of arthritis. Friends well they just dwindled off and i found comments on face book saying how i was s*^$££ company and always down and no fun to be around and how they were going to drop me and dwindle out the visits.So i cut and pasted (something similar to what RA fibro has pasted), on my facebook and said dont call me again. It hurt like mad i was so upset angry and wanted to curl up and die when i got these comments off friends and family but now i have grown a thick skin pretty quickly and it just rolls off.

    I still get angry inside and could blow some times . There are also the odd few that do this beccause this is how they were treated or that they suffer in silence beacause no ones there for them so they treat other sufferers the same. I do have sympathy for these people its not their fault.

    I find best way to deal with the ones that are just down right judgemental is to not say anything to them and to steer clear!!!

    So after all that my point is...... some of us dont judge we are just envious not jealous just envious that others have got the best meds quicker and its worked for them and they have there lives back and we still sit on the side lines and can only watch as time passes by struggling with everyday things.and these are the people on this site.

    The ones that do judge are just showing off and bragging but still doing it for the attention, but believe me Karma will come around for them one day and they wont be judgeing any more and i hope those they have judged will be about to see it, but you know people like us would be the ones to say its okay you judged me forget about it i will still help you and these are the people that are treasured in life because you are so precious and make this world a better place. Soft hugs to all of us on this site hope you all have a very happy and pain free day and think positive and positive things will happen. Lenaxx :))) Wow!!! that was deep for me but it hit a raw nerve and felt i had to say something. xx

  • Hi Lena you have voice all that is wrong in my world. Thought i was being silly!!!

    It seems to me friends people at work don't seem to care at all. Like you so eloquently (hope i spell that right)said sod them. Thanks for your views you have made me feel better xx

  • Hi Miss, thank you , i hate to see people get hurt because someone is being malicious just because they are not in pain doesnt mean we are all the same . I really feel for tilda , julie, yourself and others that have suffered this kind of abuse. I never feel sorry for myself though, i just usually stick up for every one else. Glad it made you feel better that was my intention for you and everyone on this site who has suffered this kind of abuse, . lena xx :))

  • Thank you and yes its not good to be pick on. take care xx

  • Sorry you've also been subject to these so called friends its sounding like we all have,I also like you learned a while back that these so called friends weren't worth the stress and hassle they cause. I agree I do get envious, I've explained that to my counsellor too I get envious seeing people double my age jogging for a bus, I get envious watching people take the stairs and run up them etc all things I could do before, I don't get envious about clubbing more the day to day basic things I can no longer do ( for now) x

    I'm one off the ones who has had all the fabulous meds

    Enbrel - for me caused pneumonia, constant water infection s and not a good enough drop in my DAS to be allowed to stay on it

    Sulfazalazine- caused me major headaches and just increased as the dose increased s I had to stop,

    Hydroxychloroquine- my eyes started to flare after day one and I had been warned loads to check my eyes so was told to stop straight away

    Methotrexate the tablets caused constant nausea and increased fatigue and didnt reduce my DAS enough alone, I switched to injection form and had no nausea so have stayed on the injections for a few years but my rheumatologist says although it helps its not lowering my DAS enough to be the only drug.

    Rituxmab- made me have very low blood pressure all the time, and again didnt make much improvement in my DAS

    Tocolizimab - made a marked improvement in DAS but gave me skin, stomach and mouth ulcers, eyes that could t open for a week due to facial sweeping and rash, sickness, nausea and loads more so I never got a second dose.

    Cimzea- I've just started a few weeks ago, and around the same time my uveitis (inflammation eyes) started badly in my left eye, so I'm now being monitored to see if I can continue on cimzea

    I am lucky to have had so many drugs and realise so many people aren't as lucky and in some cases its a postcode lottery which is so so wrong, my esr crp DAS scores have always been very high from the start so that's the reason I've qualified every time however I know other people who have similar DAS esr crp etc and because off there area and funding they don't get the option :(

    So I'm hoping my eye will subside and cimzea will be my wonder drug :)

  • Oh and have to say anyone starting any off the above drugs don't be put off by my reactions to them as my rheumatologist says I'm just an awkward pain in the a##e


  • Wow Lena, As I'm reading this, I am thinking, what a great view to put into an article on" how to manage..." for some journals, like from the NRAS, or New England Journal of Medicine, or the Arthritis Foundation! You said it just the way it should be!

    There are times when we meet up with someone who should have to eat the words she has said in the past, yet we show them the understanding and compassion that is built into those of us who have gone through the same problems earlier. We just naturally want to help them, and forget any hurtful things they may have said.

    Our stoicism must be likend to the wonderful people of Boston, Massachusetts this week. When faced with the unbelievable, we just get more resolved to defeat it.

    Hugs back girl! Loret xx :)

  • Yes, I suppose it is envy, I do wish mine had sorted quickly but I get my second Humira on Thursday and when not if it works I will be up dancing with the bet of them! And karma bring it on!!

  • Allanah i so hope your tnf will sort you. Never take no notice of afore mention people there so not worth it. best wishes xx

  • Envy is not a bad thing hun thats what gives us our get up and go. Good for you allananh !! Bring on the Karma lol!!!! lena xxx :))

  • Oh Alanah good luck with the humira I really hope this helps you :) and your out dancing soon :)

  • Sorry your having a hard time of it with. With people who don't care.I could not manage to read it to small xx

  • Hi I suggest on our letter day when we get to S we should have the phrase throughout your blog, Sod them! Lol OMG I am so rude lol xxxx

  • lol hahaha xxxxxxx

  • ?????? lol sounds good to me

  • Hi, new to all of this, eyes not good enough to read the info, could you put the link up. Many thanks Valerie

  • Hi Valerie the link is above xx thanks x

  • Valerie the link is up if you scroll up a bit but here it is again

    Allanah - I want to say that I relate to both you and Julie and yet i am much more in your friend's league where my RA is concerned - it's only the add on conditions and some nausea and psychological stuff that has stopped me from returning to "normal". I relate to you because I think you're wonderful and brave and fun and I can't imagine what your friend is thinking of treating you in this way.

    I do often feel guilt about coming on here at all when I'm feeling well enough to do zumba sometimes - but I also think it's good for the newbies to see that things do often improve because of these drugs for many people. However the minority for whom things don't improve and just seem to worsen are the ones I really feel for and you are the ones I think of when I tell people about RA. If I ever campaign it's going to be for people such as yourselves. Isn't that what being part of society is about?

    That's really why I was so mad with my friend - not for the present when she is newly dealing with her husband's cancer - but for saying that when they heard the news their world fell apart for the first time. I do understand but felt she should have reacted this way a long time ago to her daughter's having RA when she was young and been interested enough to know what drugs she's on and to campaign to raise RA awareness - not to brush it all under the carpet or dismiss it as being something people just have to be stoical about. There seems to be an expectation that we will just get used to having a chronic autoimmune disease and learn to be brave and deal with the ongoing and progressive nature of RA and the strong drugs we take - and for some reason I find myself unable to although I've accepted everything else that's befallen me. I think it's the uncertainty of what might happen from day to day with RA that makes it so unbearable sometimes as well as the loss of mobility and pain.

    I hate the thought of people being complacent and just saying "mine's sorted so yours should be too - and if it's not you must be making it up or doing something wrong" - to me that's verging on wicked. Not surprising you judge and you don't see her anymore - it's really horrible. She doesn't deserve you and her loss is our gain. Tilda x

  • Not at all Tilda, I know a lot of folks can do all sorts and that I am not jealous off, just when it's your own friends not understanding , that hurts! I am glad to hear your Zumba stories I wanna dance in the rain again when I am anti teffffed up!! And good her loss is my gain, she even texted me to say she was at a show seeing one of my favourite singers!! I actually replied with a very terse answer , saying well I would had gone if I had known, so she's out of my brownie PACk lol xxxx

  • Never got on with the brownies or guides myself - I would drag friends along and then they would make patrol leader when I was left as a lowly girl guide - let's say the RA brownies are the best pack of all - we rock! Tilda x

  • I had the brilliant job of teaching first aid to 16 yr old endeavour scouts. After I let them getting over the female dummies boobs they were quite good...and all passed!!

  • Well the boobs would have been a big incentive I guess?! Tilda x

  • i really know how you feel i have a close family member who says i not as bad as her(shes just been diagnosied with fybromialga) but i dont often complain as people dont understand! but my mum does find it hard to understand! just keep going and do your best. x

  • I think Polly's point on my question is very good - that there is a small percentage of RAers who have it very aggressively (and we others, out of everyone, should understand how awful that must be) and then there's another small percentage who get it quite mildly and hardly need any drugs to tackle it - just some complimentary therapy and some NSAIDs and the odd paracetamol. But the large majority are somewhere in the middle. Some are lucky enough to achieve good control with the drugs where others can't tolerate them, acquire additional autoimmune or mechanical problems or else just don't get their disease fully controlled - only partially. This site should be open to everyone with RA, whether controlled or not. For me it's been so helpful because of the psychological aspects of the disease and the isolation and not having access to a proper rheumy team - for others it will be because of the level of pain or disability they face. All have their place here I feel. But those who can walk away with RA well controlled should never be complacent about how lucky they. xx

  • Well said!!

  • Well said TIlda

    That's what the picture I out up says about the three different types off RA, and no matter what type we all have the fact is we have it we are all affected differently its just like someone with a cold feels bad and because its a change in how they normally feel then they feel bad so whether you have RA and can still work full time, can still dance etc, or you have RA and can still walk somedays and maybe a little chair dance or whether you have RA were you can only dream off walking (hobbling) more than a few steps, the fact is we're all suffering with some kind off pain, discomfort or upheaval off how our lives "should be"

    Hope you can all have as pain free a day as possible :)

  • Thanks Julie. The friend I posted about seems to be fine with me "business as usual" although I certainly know where I stand now re RA with her - lesson learned the hard way. Feeling fine again now back on MTX - injected last night for first time in five weeks and already feel less stiff and achy this morning and thumb and ankles back to "normal" - not sure whether it's psychological or actually down to the drug being back in my system but either way I'm very mindful and respectful of how lucky I am to be feeling so well. Only thing is that I now know for sure that the reason I'm drying up like an old prune is because of secondary Sjogrens rather than MTX - but at least I can go to the mechanics yard (bathroom) now for a good oiling and have Allanah to thank and keep me right on this score too with recommended gels and potions and fellow drying up sympathy!

  • Glad she is ok with you.

    Really pleased the methotrexate is working so well whether it be actually working or in the mind just glad your not suffering to much.

    Have you been diagnosed with the sjrogens ? I only ask as its something that was mentioned by my doctor as a possibility to my constant eye and mouth dryness, I use false tears every day.and always have a bottle off water on the go cause i can loose my voice when speaking but have never had anything diagnosed what gels and potions do you use please its worth a try.

  • This is the main reason I came off the MTX and Hydroxy Julie. My GP took one look at me with nose sores/ blisters that were actually visible on the outside skin of my nose - and a constant foul taste in my mouth and trouble swallowing - and she said the time had come for a drug break to see what was causing what.

    I had also seen the optician because I was struggling to read stuff at night despite new glasses and he did a blink test using dye and said that my eyes were significantly dryer than a normal person's. Because the foul taste was upsetting me most I played detective a bit once off the drugs and got the doctor to check my ANA because primary Sjogrens shows up usually in a positive ANA result (can also indicate possible Lupus).

    Mine was negative so I researched secondary Sjogrens, which both my GPs were sure it was, and this seems highly likely now that I've eliminated the MTX and Hydroxy. I discovered that the nausea ,which was also really getting me down as lasting all week, was down to the Hydroxy though - which didn't seem to be making much difference so I've come off it.

    So despite flaring last week I am glad I did this trial with my GP's support. There's no way of testing for secondary Sjogrens apart from biopsies so it's just diagnosed by probability I think and is autoimmune so common to acquire it with RA. Allanah recommended Biotene mouth gel which I use at night and I have pastilles my GP prescribed and the horrid taste is much better controlled now my mouth is less dry. Like you I always sip water and was prescribed Hypromeliose preservative free eye drops by my GP at my request (optician's suggestion). All keep these me from drying out like an old building (cracks could appear at any moment and subsidence with it?!) but the crusty outer ear is new and a bit yiucky!

  • Sounds much worse than mine I don't get blisters, poor you :(

    Maybe mine is just medications causing my mouth to be constantly dry ( feel like I'm spitting feathers all time) and my eyes could be through years off steroid eye drops and other eye drops etc, I only asked as one off the duty doctors mentioned it could be sjrogens a while back and I've since forgot to mention it to my rheumatologist as there never seems enough time I've always something else to complain about lol.

    I think unfortunately most off us with RA end up with multiple auto immune diseases, my confirmed ones are RA, uveitis and psrasis, I'm hoping threes a good number and I don't collect any more :/

    Hope all your lotions and potions work well :)

  • Mine are hypothyroid, RA, slight Reynauds (could be thyroid, meno or weightloss since RA though) and now Sjogrens. I actually feel better by a few decades than when I was four stone heavier and covered in eczema so I'm not complaining I do promise! I think I make much more effort with my diet and exercise now I have RA but conscious that this is because I can. Think injectable methotrexate must work like 3-in-1 oil for me ha ha! Xxx

  • Welcome back to the drug pack, Tilda! There are all sorts of little annoyances we have to deal with:)xxxc Loret

  • We wouldn't say we felt cr@p if we didn't! I know someone who thinks they have RA and and may well have, but this person likes to do something which a dear friend of mine used to call "out-crip" people, which meant she liked to have more than anyone else!! There are many people who wont recognise you are really struggling. Then there are those insensitive people who don't think that their constant comments about going out painting the town might upset someone who is housebound and is their close friend.

    When I hear of people sincerely saying they have been out and done something they haven't done for years ... Been able to wear some heels etc, I think ... Wow ... That med did THAT?! There's hope for me too. ;-)

    We all have enough madness going on to make us come here and want to find support/help/comfort and very importantly ... A giggle of two! I never think myself as being worse than anyone else as I can walk ... Admittedly a very odd hobble at the mo with my jumbo knees! ... but I am not in a chair and still on my feet and just about have my sanity although the jury is out on that one! (especially these Fentanyl dreams I am having since going up to 50 mcg)

    Tilda, I am glad to know you can Zumba! Just because I can't do such things doesn't mean I don't want others to or hear about them! I want to hear people are feeling better. It is uplifting. That's not the same as Allanah's "friend" and her boasting texts. Hope the Humira is going work wonders for you. Julie RA-Fibro - so sorry to hear your severe reactions :-( and hope your eye better soon and the new med works for you.

    I had a very good friend of many years since childhood who said to me about my knees being bad and stiff when I lifted them when I went upstairs ... Why don't you kneel on each step as you go up, for a rest !! (only if I want to go into orbit!!). People are just ..... DAFT too at times! This friend sent me numerous emails recently about her job as a receptionist being stressful and I spent ages replying to her as she said she was depressed but when I told her I couldn't meet her in the city for lunch as it was too vast to walk across, she got huffy and annoyed and didn't email for weeks, knowing full well I had all my screening and flaring joints. Not even asked how I got on. Mindst, don't think I would have been pleased with any more of her ingenious physio tips !! ;-)

    I have a lovely friend with fibromyalgia and she always says ... Mine is nothing compared to yours and I say .. No no no ... It is not like that. She suffers exhaustion and pain on a daily basis and can't lift or do anything to exert herself so she has her own frustrations and restrictions.

    Whatever our Level of RA ... We've got it and we have had to adjust and we have come here for support and that doesn't matter if it is mild, moderate or raging!

    Lena, you are lovely I know it! Those oafs writing garbage on FB about your RA don't deserve you! We are lucky however to have the pleasure of your company here! ;-)Many wonderful supportive people too!




  • Well said Julie :)

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