Could I end up disabled ?

Hi, I haven't been doing to great on my benepali I'm not doing great at the minute not sleeping, so last night I was thinking back as to what as been said at clinic, two nurses who are CNS and know there job and have 50/60 years experience between them, I have the upmost respect for these two nurses actually, I'm a Auxillary at the trust.but to get to the point one said to me about my prognoses isn't great when she looked at my antibodies, ccp was extremely high, the other nurse said I will end up disabled, this was ticking over in my head last night, I know they know there jobs they wouldn't b*llsh*t me,with there amount of rheumatology experience should they say it to me? I know all that you should stay positive and so on,.I'm a 18 months down the line, looking back I'm certain it started in my feet many years ago but you just plod on family and so on. The question is who as ended up disabled after diagnoses?I do want bluntness if I'm honest, do realise that we need the drugs that work for us and mine aren't I need to find the one suited to me I get that, I may never find it who knows? some must struggle finding this? I'm sorry this is a dreadful post just need some insight ?

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97 Replies

  • Ok so they can have an opinion. I had extremely high blood inflammation and could hardly walk.

    However my rheumatologist treated me exceptionally well and now I can walk some bits..but not others.

    This is because I had about four years trying different drugs until I got on this Tcz which seems to be working well.

    Everyone is different. There will be folks here who got one drug , It worked a treat and they had no problems.

    Some on here took a bit longer to get sorted with drug therapies.

    For me being positive is the way to go. Eat a healthy diet, exercise by moving when you can and live your life!

    What ifs probably won t happen and get help from all the team, ask to be referred to Rheumy, occupational therapist, physio and psychologist....evety little helps!

    But honestly if you can keep positive it does help. Don't worry about some remarks from staff, worry about what the multidisciplinary team say!

    And remember the Nras Helpline is brilliant when you get these worries xx

  • Thanks mate I finally see the doctor this month after nearly 18 months the nurse are like prison guards you can't get near the doc, I just want drugs that work that's all I can't face 18 more months of trial and error . Try this try that pure nightmare.

  • Al by the way I work I take care of my family and so on I'm active , I'm not depressed I'm just fed up of this disease .

  • I wasn t depressed but psychologist just helped me adapt to life changes x

  • Vonnie10 this is not a dreadful post, as you put it. It is an honest question. The antibody they are referring to is Anti Cyclic Cittrulinated Peptide. If this is very high , 250+ then it means a more progressive/degenerative form of RD.

    Mine is 300. It is not a predetermined fact just a probability. It can take time to find a drug that works for you. I have not had any luck thus far. I do suggest having genetic screening done a.s.a.p. It will tell you how you are going to respond to drugs upfront. This may help shorten the process for you.

    The reality is your life will never

    Do not get discouraged most people will find a combination of treatments that work. be the same but you will adjust.

    There will be many questions still ahead so keep monitoring this site. It is the place to come for answers, support and guidance, you are not alone 🤕🤔🤧

  • So what's genetic testing all about in sure my ccp bloods were in the higher higher hundreds. In fact when I go this month I am getting all my letters and results from them so I can keep a eye and try and educate myself I get I won't be the same alls I want is drugs that do there job end of.

  • Good idea to get copies of letters ! Genetic testing they maybe looking to exclude other causes? Ra if familial but no genetic link noted.

    Keep trying the drugs. One will help !

  • What's familial testing ?

  • My GP kept giving me drug after drug for fifteen years. I got to a point where I could no longer walk. He insisted it was Fibromyalgia and wanted to send me away with yet another drug. I refused both diagnoses and drug then insisted he do full blood work up or I would simply go to another doctor. The next day my labs came back with eye popping results. I saw my Rheumatologist the following week. Since that day I have seen fourteen specialists. Hematology, Cardiology, Gastrointestinal , Neurologist, Dermatologists....there has been four DMARD's, and four Biologics. I was running three businesses now on CPP Disability. It has been quite a ride. My Rheumy believes I have had this at least ten years so I am in the too late category lol.

    I am allergic to many drugs which makes life interesting. I had 23andme do genome mapping and there are many sites for interpretation of raw data. I am currently on a second round of Rituxan as well as Methotrexate injections 20mg weekly. To be honest the drugs have been horrible for me. I have hives, ulcers, Pityriasis, nausea, headaches... sounds dreadful right. It is amazing what we get use to. The fatigue is relentless but I have inflammation under control! For now. The sad truth is it is different for everyone. There is no way of knowing what is yet to come. Discoveries are being made everyday. There will be adjustments but things will settle down. I am sure you are still letting diagnoses sink in. A positive approach is your best tool. Build a support team, someone you can confide in. Happy face in public maybe needed but not at home. I have clung to a saying for past two years, 'this to shall pass'. When the initial crisis has passed you can better judge what adjustments will be necessary. Hang in there and post updates. Big hugs 🤗

  • Enough Already Damaged, Vonnie needs help & empathy....she doesn't need scaring to death by your very unfortunate personal experiences.

    I am sorry you are having such a bad time of it, but please understand not everybody has such dreadful fact I think most on here eventually get to a place they can live with......even if it doesn't happen overnight.

    I hope you soon find some resolution to your condition........

  • Hi AgedCrone, sorry I did not get back to you sooner. Also sorry if my message sounded negative to you. I thought what I was saying was positive.

    I should perhaps stress 'new discoveries happening everyday'.

    I am Canadian. I was a Financial Planner for twenty years so have benefits. MSP medical services plan is our NHS in some ways. They do not cover drugs. They do pay for hospital, doctors and tests. I do believe we will no long be paying monthly premiums but off topic.

    It was not my intention to frighten Vonnie. I was suggesting genetic testing to avoid drug reactions. I also recommended a strong support system. If we cannot be honest on this site then what is the point exactly. She gets enough people telling her it is nothing. Some of us are disabled, if only temporarily while others can go their entire life without missing a days work.

    I am simply being honest. Was not aware we had to keep a public face on here as well. Clearly not the site for me. Best of luck to you all.

  • Thanks damaged you didn't offend me I have seen many things over the years .

  • I don't scare easily I work in a hospital I've seen it all.... agedcrone

  • I wasn't offended At all like I have said I see many things in a health setting right and wrong to be fair , I just need some this to be resolved to a decent level I get I won't be a100% but at least 85/90% I'm good with that, that isn't to much to ask is it?

  • Gosh, I had not thought of genetics, but after your post I did, yes it is there if you look far enough! Maybe, one day I will take them! Would be interesting to find out the good things about ourselves too!

  • I was raised in a French Canadian home but my moms father was Irish. It turns out I am 39% British/Irish and only 5% French lol I also have 1200+ cousins. Fun to find out you have royal blood lines etc.. They also list traits , how you process alcohol. All types of fun facts. But it only lists potential, the environment is what determines outcome. The Rheumatology Dept was deAlso many many snaps are involved so it in no way replaces medical advise . It's imply is an added tool.

    I would have thought it was readily available in the UK. The genome mapping was done in UK. Many clinics like Rebecca MCDonald wing of Toronto's Mount Sanai.These clinics have geneticist on site. It is used to develop medication protocols. A targeted treatment approach. It is not available everywhere.

  • Thanks damaged interesting I'm betting we have it here but our NHS are very careful what blood test they do, I even have to ask for my b12, vit d and iron panel to be done at my GP, it's bonkers that I have to be my own advocate otherwise I will be in the dark, crazy.

  • I'm taking all this on board will take it to clinic with me.

  • Ironic that GWAS Genome Wide Association Studies, was done in UK. That is the group that did the genome map used by all other organizations and yet not readily available to you.

    In addition NHS is funded by tax payers , is it not? My goal would be as it is here, get involved. I joined Patient Voices Network here but am certain you must have similar programs in the UK.

    With your experience with health services I am certain you are aware that being an active participant in your health care is essential . Doctors, nurses and other health care team have numerous patients but you have one, you. Who better to lead the team? It may not be popular with old school professionals but is a reality today. We are no longer willing to be kept in the dark or passively do whatever they say. Sorry , that will never happen again. I am getting Loud and that is ok. But again was not my intention to be negative as I see my approach as proactive. I am no longer willing to wait for my team to find a solution. It is my job to do all I possibly can to improve my quality of life. Genetics, environment , viruses or hormones , hard to fix why so focus on prevention seems within my peeve so I am doing what I can to improve the odds for my son. He has two diabetic grandfathers as well so trying to have home change his lifestyle before it is to late.🤗

  • D I tell our patients it's them that shout loudest , I need to take a leaf out my own book.

  • Re- our own conditions, I agree with AgedCrone that while we do want full information, there can be a line over which it is possible to open ourselves to too much information and become confused & anxious. 'Damaged' doesn't know what country Vonnie lives in, or whether she could even afford all this advanced testing! Healthunlocked is hugely helpful, interesting & supportive - but the most important people to ask questions of are your specialist Rheumatology nurses and doctors. At least in Britain, they are the people whose job it is to help us in any way they can, including questions & discussion where required. Best wishes.

  • p.s. And, very importantly, the NRAS excellent professional resources.

  • I need to read up on familial testing what is it ?

  • I never got tested for any genetic links. I have a grandmother father and eight uncles and now two young cousins all with Ra.

    It was very evident from my ccp I had a high inflammation and therefore they diagnosed RA

    I asked the doc if it was genetic as I worried I would pass it onto into my kids.

    He said it's not genetic therefore not passed on in genes but there is a tendancy to run in familys ie familial links.

  • Genetic test ? I see my son is having problems right now he needs to be tested.

  • As I said I was told it's NOT genetic linked. But could potentially run in families maybe missing generations.

  • I'm certain he as what I have god help him he is a roofer as well running is own business told him he needs is bloods doing asap.

  • Could just be the fact he's a roofer gives him sore joints! I look too deeply into the kids aches and pains!

  • But he should get tested he rings me complaining he can't open is hands for about a hour that's not normal.

  • Maybe . The signs is stiffness, swelling and pain should be investigated

  • When both my husband & I got diagnosed with seropositive RA, our first thoughts were about our children.

    There is a new diagnostic test (2016) called IdentRA (UK) or Jointstat (Canada) that is far more accurate than the ANA , CCP etc test to diagnose RA.

    IdentRA/ Joinstat messures the 14-3-3 protiens in your blood/ joints. This new test is used when your rheumie "just doesn't" know for sure if he can diagnose you with RA eventhough the ANA, CCP test are positive.

    Anyways, we got our kids tested with this test and thier results were negative--- NO RA for them :)

    Infact, my hubby's rheumatologist wanted to retest him with this test. Guess what? The Joinstat test results changed his seropositive RA diagnose to pseudogout. His pseudogout was so out of control that it mimicked RA.

    Today my hubby has been drugfree for about 6 months now. Diet has controlled his pseudogout. He eats everything & anything except processed lunch meat & sausages.

  • Hia Vonnie,

    How long have you been on Bene? What have you tried before this? Sorry for questions and no answers, want to flesh out the bones of your situ. What symptoms do you have now?

    For me it took more than 3 years to get to the best treatment for my particular issues. It's not uncommon to spend time/years I'm afraid getting the right med or mix of meds. NHS have a system in the way they try you with meds. I was told 3 different DMARDS must be tried before any biolgic. You need to know the lead time for each meds your trying, and if you aren't vibing with it by the time it's supposed to have fully kicked in, then shout...Next! And move on to next med they have lined up for you, so maybe you can speed things up this way.

    I said here before, my head rhuemy who was the kingpin in my region said quote..."You will never be in a wheelchair bcz of the meds we have today" Caveat is we are all different but I like to think it's true more times than not for most ppl.


  • Hi I was on hyroroxoquinne methotrexate and sulphasalizine all with horrible side effect absees severe headaches nightmares horrendous ones, and nausea , my doc said my inflammation is severe , I'm now on benepali 12 weeks in I'm flaring constantly not a day goes by, I may have a few hours break , lik yesterday I had 4 hours were I felt ok the stiffness is a bit better but not much the inflammation as gone down to what it was but I just feel it's all inside if you get me I've pain seem to be moving into my elbows, ankle and knee, it was just my hands to start with. I just don't think this benepali is a miracle drug

  • I take cocodamol and dihdrocodiene when's it's bad which is mostly all the time lately

  • I think Damaged is American or Canadian, so a different (and expensive) medical system. Genetic testing is not common in the UK yet, but there is research underway which aims to use genetics to work out which drug is likely to be most effective for you. But a few years off yet, so we're still stuck with trial and error.

    As for becoming disabled, you are only a year post-diagnosis so it's not something that you should panic about yet. Keep pushing your doctors and nurses to get the best treatment for you. I had anti-CCP of I think 340 when diagnosed and couldn't walk more than a few steps. 6 years later I'm basically fine and do a 5km walk every day. The more experienced nurses have seen the worst of this disease, but treatments now are very different from 20-30 years ago so you can't read that much into their experience.

  • Helix I can't exactly remember my ccp but it was in the hundreds the nurses I've seen are very experienced not kids and clued up, I think myself I've had this for many years I'm certain it started in my feet around 16 year ago went away came back 6 year ago thinking back now helix, typically I just carried on my hands last year were horrific was of work for 4 months , gone back, nurse on second visit regarding my bloods and all there bits she said my outlook isn't great so what's next. I'm constantly struggling.

  • I think the more experienced nurses are sometimes stuck in their past experiences of people with RA, and so have a gloomier outlook. Try not to let the nurses comment haunt you, and focus on looking forward. You can do lots to help yourself as well by seeing if you can make improvements to your lifestyle, such as making sure you're the right weight, exercising daily even if all you can do are range of motion exercises, and eating and sleeping properly. And if you smoke, please stop!

  • Helix I must do five miles a night in work running around after the patients.

  • familial testing is a DNA test. Done in a hospital or doctor's office. I don't see how it would be used for RA as it is yet to be discovered in your DNA. Maybe one day it will be discovered in our DNA...

    Anyways, my daughters friend was prescribed a DNA test from her doctor. She went to our local hospital to see if her baby will carry the huntington disease gene, a horrific genetic disease. Our Government medical plan & I'm sure your government medical plan will pay for this test if deemed for the "23andme " genome mapping test....well that's a "do it yourself" DNA test you buy on line from to find out who you are related to...I don't think I would trust a pay out of pocket "do it yourself" DNA mail order kit to diagnose me.. I don't think you should either.

  • I would pay though if I know it would help.

  • Genetic testing is only carried out if you have a condition that can be passed from parent to child.

    That is not the case with RA so it would not be a test carried out by a rheumatologist in the UK. When I was first diagnosed I did ask as I am the only person in my family ..both maternal & paternal sides have RA......

  • It is testing of family members. I had genetic screening done for my son as well as myself. But 23andme has linked over 1200 cousins as well lol I would obtain the paternal info but father has passed. It simply provides ancestry but not my area of interest. I wanted the health info for my son.

  • Hi,

    You said you wanted blunt... I am disabled. I was diagnosed v late when lots of damage had already been done. The good news is that there is life after disability. It is different, but can be okay- even good sometimes! So if the worst happens hang in there- it's not as bad as it might seem at first.

    Take care,

    L x

  • Thanks Lizzie ❤️

  • I hope to help assuage your greatest fears with my reply. My anti CCP is >250 and I had bone erosions present at diagnosis in both feet and hands. Not the best scenario for good prognosis either.

    Like you, RA started in my feet many years before it reached my hands and many years before diagnosis.

    I'm now doing very well. I can run again and race my bike in the mountains.

    It took close to 16 months for the meds to kick in but now I'm pretty darn close to normal and at the moment I don't suffer and side effects.

    I also look after myself as best I can with healthy food, exercise and I'm lucky to not have a great deal of stress in my life.

    Although we're all different it really isn't always doom and gloom. As someone above said, the meds have changed so much over the years and newer treatments are on the horizon, whether medications or otherwise.

    Best advise I can give you is as others have offered. Be bold, hold your head up high and ask for a reassessment of your meds if and when you feel necessary. Hang in there. I wish you the best.

  • Thankyou❤️

  • I have had 3 different biologics now and finally my fourth (stelara) seams to be working for me 🤞you just have to be firm with your consultant it's us that's going through this s*** not them x hope you find the right one

  • Thanks. Fifa I'm sick of it now making me miserable I have flipped my lid. Today certain people don't get it, can't stand that they just think it's only only arthritis 😡

  • I'm made up for you Fifa that's all I want

  • It's 'only arthritis' , 'Oh my Grandmother has that'....people can be so tactless from sheer ignorance so I understand you flipping your lid Vonnie and that's good because you need some fire in your belly to fight this disease. Few know the full extent of what living with RA can entail but those of us who've replied to you DO and whilst we have different levels of pain/disability/meds, we can empathise/sympathise with what you're going through.

    Some tips from 36 years of RA: learn about this condition - NRAS website a reliable source of sound info; find support of the listening kind, not the giving advice without really listening kind; exercise as much as you can when not in a big flare; pay attention to your diet and become aware of foods that might trigger inflammation; don't just Do as you're told by your rheumatologist if you're not happy - question and challenge politely but firmly; find things you can enjoy and distract yourself with, despite the worries; educate those closest to you so they know what you're going through and develop realistic expectations of you.

    Never give up hope! The drugs are unrecognisable compared to when I was diagnosed and there are more on the horizon. Take care x

  • I do try and stay healthy but I love chocolate I work Loki after the family in fact I've got my gorgeous grand daughter today 18 months I don't just sit around.

  • Someone said something to me earlier today that put me in mind of Katharine Hepburn who when complimented on retaining her fabulous figure into her later years responded: “What you see before you, my friend, is the result of a lifetime of chocolate." She's also famous for her brownie recipe and her generous hospitality with them. :)

    Have a great time with your grand daughter!

  • Thankyou I did she as gone home now my 🌎 Paying for it now though burning and aching life goes on. ❤️

  • I'm certainly no Katharine Hepburn, and I'm no Mary berry I cannot bake.

  • I'm trying to cut down on chocolate my worst habit I don't eat carbs rarely when I do, I work run about after the family hate the gym plus I couldn't face a gym the way I feel, look after my gorgeous grand daughter she stays each Wednesday until Thursday 18 months such a doll I work 2 night at the hospital each weekend so I'm busy really it's just a struggle after been diagnosed especially as the drugs aren't doing their job. Thankyou witness.

  • Those nurses were probably trying to get across that the first meds you take might not work for you .....but it was not very professional of them to mention becoming disabled. But don't try to second guess which drugs you takes Rheumatologists years to understand your test results.

    You have to keep trying what your Rheumy recommends- as the next drug could well be just what it takes to make life bearable again.My first Rheumy told me my markers were among the worst he had seen...but I.m still here walking & talking. Had a few hiccups along the way....but I always thought things would improve.

    I'm sure after 18 months you think it is only happening to you. Sadly I think everyone who posts here has had times like that .....thinking it will never get any better...but it usually does - with time.

    I am naturally a positive person & despite taking quite a while to find a drug that suited me, I never ever thought I would become seriously disabled. Might have hobbled around on sticks for a while...but I always thought there would be something to help me through......& I was right.

    So please put being disabled right out of your mind & speak to your rheumatologist about changing your meds to see if he/she can find the right cocktail that will improve things for you. It does help if you are not overweight, keep to a healthy diet & keep your alcohol intake down (if Rheumy days you can have it)

    I do hope your next post will be more positive...tell that nurse you've got enough problems without her scaring you half to death!

  • No crone the first nurse was just giving me it straight with the ccp due to them been so high the second one was been a bit funny because I wasn't happy taking the methotrexate told her I'm not taking it got abscess the third nurse even said you need surgery to remove it, told her no chance she was a bit clueless really, I've got my head up but it's a worry at times thanks matey

  • uhm...abscess?

  • Suz sorry I've only just seen this I'm prone to abscess I had a conditionabout 15 years ago hydro something or other it was reoccurring abscess it went on for over 5 years. The methotrexate can cause abscess a side effect it started to trigger again I had 3 whilst taking the meth so the rheum knocked it in the head straight away.

  • Was it a Hidradentitis supprativa abscess or an absess on your gums? Just currious.

  • Agree totally AG. Well said. The nurses should give a newly diagnosed person confidence and hope. Not send them away even more stressed. It is hard when you are first diagnosed and you tend to take in and dwell on what has been said as you think .. Well they must be right. I was like that at first then when you realise you're not always going to be at the bottom of the slippery slope you think .. Not doing too bad actually. What were they telling me that for? I went home after a young Registrar said to me I'd be in a wheelchair not long after diagnosis in 1995. I said to my partner .. We'll have to widen the doors for the wheelchair. His reply I can't type! (Round, spherical objects! LOL.) I kept that in my mind and was determined to walk more and get back to good mobility. Things take time and during that time we can get despondent and it's natural. It's good to be near people who are good for you. Make you smile and encourage you. Realising you are not useless and have a lot still to offer is important.

    It's not that the nurses or doctors are wrong as such but they tend to tell you what can happen and paint a very realistic picture of if things don't go well. I always found my physiotherapist who is a senior rheumy physio, was the most inspiring person I met in rheumatology. He's positive and encouraging and he is a star! We are vulnerable when feeling down with RA/RD issues especially when newly diagnosed when you tend to be confused and can feel panic.

    I had some strange experiences with a very volatile rheumy nurse who liked to try scare, you who was due to retire and was losing the plot being mean to many patients. She gave me some naff advice about my med and wouldn't tell me if I needed to stop it before a general anaesthetic? (Well what the hell do you think you should do .. Was her reply!). I refused to have anything to do with her after several ranting outbursts from her. One was a nasty phone call two weeks before my wedding and whilst my partner was in the middle of having some surgery. I needed her calling me a liar as she couldn't find my blood test results like I needed a flare up! Bad times. Fortunately there is a wonderful biologics nurse specialist for a few years now but there is also the retired nurse's colleague and friend working with the lovely biologics nurse and I think it's no coincidence she is off with me in a very childish way. She tells me she looks much younger and more tanned then I am? No she doesn't look younger .. (Much older actually and she's got an old mindset!) But who cares. Why should she care how I look? Bonkers. That's not what you need when you're having your infusions!! My reply is always .. pale untanned skin means no wrinkles! She shuts up then! I actually have a golden glow from just being outside in the garden but I'm definitely not a sun worshipper. What a thing to say to someone when they are trussed up with infusion wires and not feeling at their best. Some people can't help themselves! Sensitivity from people would be appreciated but we're not always going to get that. Mostly I've had great rheumy staff .. Just a couple of odd bods! 😁

    Neonkittie 😻x

  • My biological infusion nurses are wonderful....they are so busy with chemo patients only staying an hour or two but with us Rheumy recipients usually being there most off the day they always have time to have a word of encouragement.

    My Rheumy nurses are great also, but their helpline is such a disaster I have given up using it. Last week it was manned by a girl so illiterate, I told her I would have to call back as she appeared not to be able to spell three letter words. I still don't know the answer to my query....but I'm sitting in the sunshine who cares?

    I really agree neonkittie PMA ( Positive Mental Attitude) goes a long way with RA...negativity has no place in our treatment. ....if I think the nurses are being negative I just ignore them.....& that has worked so Far!

  • Yes I have to say the Helpline can be hit and miss! There is often a recorded message saying the helpline is closed!

  • I normally ignore anything I deem as being negative too but the nurse phoning me up etc and calling me a liar was a bit too much to let go.

  • Agedcrone I should be ok if I end up on a infusion my daughter works at the day case, plus two of my friends, poor daughter is like no mum please don't moan I've had it all day in the unit bless her,our helpline is awful I have rang three days ago I'm out of my benepali but I can't take it at the minute I've got a gum abscess I'm still waiting for a nurse to ring me back, you have just reminded me I need to ring tomorrow. I dread the thought of it,I i work in the trust I will probably be sitting next to patient I've nursed. Funny. Me Been haematology, knew I should went a different trust for treatment.

  • ...gum abscess?

  • Yes a abscess in my gum suz I seem to be getting them lately don't know why do you have a clue ?

  • Ever had a root canal done by a dentist?

  • No I don't fancy root canal I would rather not I got some Flagyl it's sorted it now I hate the dentist.

  • she sounds dreadful how dare she say that to you she must be jealous 😒

  • RA has disabled me. I have damage to all my joints, including spine and limited movement, but I was dx 1971, 46 years ago as a child when there were less drugs available. Anyone dx now should have a much brighter outcome than me, with all the new drugs available. To put things into perspective, I went through school and 22 years of work before I became disabled. It didn't happen overnight.

  • That's lovely to here.

  • We always have to try have hope and positivity. I remember when I was first diagnosed with RA and told by a young consultant that I would probably be in a wheelchair very soon. That was over twenty years ago. (I am not in a wheelchair.)

    Then another young registrar said .. I'd like to talk about your "disability" and I replied .. "I'd actually like to talk about my ability." I was 35 and I did not buy into this .. You're poorly, you're unwell .. You can't do much thing ... many of them were trying to tell me. Yes to some maybe people with RA/RD are unwell referring to those with other major complications, unfortunately and I'm sorry for that. I refer to it as a condition when people ask about what I have. I am not dillusional and don't have my head in the sand but I've always been a glass half full person. I want to be in control of the RA instead of it controlling me. Sometimes it will really challenge me and then it's hard.

    Many people have failed meds and have to change and yes some lose their efficacy after a time but I've gone ten years on one med no problem and I changed meds to get better effectiveness. It was only the biologic blip that sent me really downwards before I found something that works very, very well for me the last three years and got me moving and pain free and inflammation free again. It's not easy sorting all these things out and I have Graves disease too which was not very good ten years ago but it is alright now. Sure I will need my knees doing and my hip is eroding but then over a certain age people wirhout RA/RD have these issues too. I've had major family issues (decline of my dear Mum) to deal with the last few years so my ops have taken a back seat when thinking about them.

    I think it is very scary at first being diagnosed but as you go on and find out that you're still here 😃 and that you can still do a lot of things then it becomes a different way of life. Not always bad. Not at all! Giving up a crazy job meant I could go back and study for my BA and MA and neither were easy but art was/is my passion and I did it. I'm feisty and stubborn at times!

    Doing anything seems impossible when you are in awful pain and mobility is restricted but the majority of people will get there eventually and find the med that works for them and controls the awful pain and symptoms.

    I've had some tough times. I still have. No denying it and my heart goes out to all of us here who are suffering/. Flares happen, blips and bad times but for many of us there are good long spells of stability.

    Love to all. Neonkittie 😻

  • I agree with all you say Neonkittie. I was diagnosed in 1999 & have had ups & downs ...but as I knew there was no cure I also knew I had to believe my Rheumatologists would do their best for me & they have.

    I didn't take every pill & potion suggested...but once it was explained how X would aid Y in the cocktail I went along with the suggestions & had very few nasty reactions.

    I'm now jogging along comfortably....but I know a positive attitude & definitely avoiding stressing is a major contributor to coping.

  • I agree entirely about the avoiding stress. That's a major thing to mess up my good RA health. No coincidence that I've felt awful during some stressful times the past couple of years sorting my late Mum's probate (and not to mention her passing away) and a bonkers SIL treating me like her unpaid employee??!! 😣 I ensure I have things to occupy me I love .. Art and nature and some dear friends and weekends and lovely days out with my hubby. Simple but enjoyable and stress busting!

    I was a tad stubborn re resisting biologics at first I was so scared but when I was finding my med was not controlling the RA and constant steroid shots were doing it all, I said .. Let's do it. The rheumy said we needed a blunderbuss of a med instead of tinkering around. Sometimes it takes a little while to get there.

  • Each person, case is different and should be treated as such. Make recommended diet, prescription changes as per your specialist/doctor.

    While these nurses have decades of experience and volumes of useful knowledge, they haven't been working with you as closely as your doctor has. Listen to her/him.

    Last year, a nurse with plenty of experience predicted that my son's broken ankle would lead to surgery and pins. Our surgeon said "Rubbish."

    My son's pin-free, no surgery and still the same high energy kid he always was on the sports field.

    Talk to the experts.

  • I've. Seen my doctor once I have however seen the nurses more ,

  • I was so ill when I was diagnosed , I thought I might end in in a wheelchair. I could barely walk. The doctor said I don't think you will . Took a while to feel better and I'm ok now.

  • Good outlook! Enjoy life now. Concern yourself with your health only when there's a need to do something.

  • Great thanks

  • Don't know what to say really!! If my RA doesn't get me, then maybe the MS will & if that doesn't there's always the Scleroderma!!! I don't think like that to b honest, otherwise you don't have a life. How longs a piece of string? Sometimes it doesn't pay to ponder otherwise I'd b buying a rope now. I'm not playing things down, believe me I struggle, but as others have said, us humans are very good at adapting to situations, you will otherwise what is there? What's the alternative?

  • Well said....if we all consulted Dr Google ...we'd never leave the House would we?

    I reckon if you think you'll survive you will......if you don' need to have a change of the long run we have to make more effort to stay level......but as you say..what's the alternative?

  • Life's hard enough isn't it. Got to have a happy medium surely.

  • I will,get there and get better I'm sure, was on a bit of a downer yesterday and not sleeping great that hasn't helped. Thanks up and onwards as they say.

  • We all have them, sometimes it all gets too much. Hope your feeling better. Like you say, onwards and upwards!!!

  • Everyone in your world will have an opinion! Please listen to your medical team, and don't let others get you down! Just because it is written somewhere does not mean it will happen to you! Keep your eyes and heart living in the moment, that really is all any of us have, and stay optimistic the you will find a treatment that will give you the best life forward!

  • Background, I'm generally the kind of person that takes in what comes my way. It might shock or depress me a bit to start with, but then I find a way to first accept what comes my way and do what I can to make the best of it ( ruminating on it endlessly does no good ). Then I try to look at the glass half full and see what ways that whatever has come my way can be turned into some sort of positive affect on my life. For example, RA could potentially be devastating to my career. However, I choose to look at it as a positive in that, there are many things I've been waiting to do "until retirement" or "someday". I've put others first for years when I really should've had more balance in my life & career, looking after some of my own needs. Being diagnosed with RA which started out as a ton of "allergic reactions" has made me get my priorities sorted out. I am making time now to do some of the things that I thought I would have plenty of time to do someday. Realistically, as an artist, it would/will be a tough road to lose the ability to pursue creative activities in the way I have always been used to. But on the bright side, I can still be creative. I may just have to have someone else do some of the tasks that I normally take care of myself. For example, I realize that doing some activities with machines that vibrate (sanders, etc) cause a lot of pain for me, but I can have someone that is more able to tolerate that do sanding for me. I can adjust my drawing, painting, quilting, schedule in a way that instead of doing ALL of one activity for hours, that I can do one thing for 10-15 minutes until it starts to hurt, switch activities, and repeat as needed. It may make me slower to get things done, but I still will be able to do what I want. I will still be able to be creative.

    The term disabled seems to be relative to what a person wants or needs to do and finding a way to get it done. Yes, there may come a time when I have to choose between drawing & getting the dishes done or cleaning house. It may be because of pain, or fatigue. But to me that's a no brainer. No one in my family is going to care whether it's me or someone else doing my housework, so I'm going to find help to do those things that are difficult when looking at my life as as a whole, so that I can concentrate on being able to continue to do the things that I enjoy & are part of my career. Technically, some of that might allow people to put the label on me of disabled, but along with the diagnosis of RA and some age came the brashness of not really giving two hoots how others want to label me. That's their problem, not mine. Just because they want to label me, doesn't mean that's all that I am.

    Someday will you have to do things differently, or swap out one activity for another, or even get some help with certain tasks? Maybe! But so do a lot of people that have other diseases, have an accident or injury. I suppose the benefit of RA is that while it can be aggressive and progress quickly, it usually isn't totally life changing in a blink of an eye. Often we can see the progression coming and develop a plan for the future, even if it's faster than we thought, whereas there are people who lose a limb, have a stroke, etc that changes their life without any time to see the change coming and they adapt. We can choose to adapt to the changes in our abilities also.

  • Blessyou your a artist 👨‍🎤

  • What an inspirational bunch we are! Everyone who's posted has resilience in spades - and so honest and realistic. No disabilities here!

  • What are they?!!!! Seriously, it doesn't need to be, well, serious all the time!!!🤗 life needs living whatever comes our way. Your a long time looking at the lid!!

  • I'm disabled. If I fight it too much I end up more disabled. My fight is to pace and accept. It's hard, but in doing so I've recovered a life. I still horse ride, with adaptations and a push up from my wife! ( And a catch when I fall off rather than dismount). I did 40 miles on my horse the other day, at one point holding on to the reins with my teeth. I feel positive, happy. I ignore my PSA to an extent because it's just a part of me. For me, dreaming and yearning about being 'better' meant my life was on hold and I love life! I bought endless 'solutions' and my hopes were raised and dashed at each one. Maybe I'm different in that I asked for help so late have permant damage. Disabled sn't a dirty word and not something to be too scared of. I'd rather not be disabled but who gets to choose lol. X

  • Thank you all you wonderful lovely people you truly are fighters. I really didn't think I would get such a strong reaction with my question yous have blown me away. ❤️

  • Please, I know I post too much, yes there is a treatment out there! It is all trial and error! You may never be yourself as you knew it but you will be a better person because of this! I bet you have never understood illness the way you do today! Life is not always fair! But, look at the world around us, we still have it better than many, and we all have people who love us, even though they don't know how to say it!

  • I think LizzieR also raises a very valid point which is about knowing what suits us best in terms of acceptance. I'm in a fighting phase right now and it feels empowering but I also recognise what LizzieR describes about being at peace and embracing life as it is, in LiizieR's case that is being OK with being 'disabled'. I know that place very well.

    I used the expression 'No disabilities here' to illustrate how we may have physical constraints but we're determined not to let them affect us. And LizzieR's approach is not so different, it just comes from another place. Hope that makes sense?

  • It does! Thanks Witness 2 x

  • Hi Vonnie , I think your friends have been a little irresponsible telling you you will be disabled. It's so variable. I think to a large extent it depends on how quickly you were diagnosed and got medication. Such good meds available now that it should not mean automatic disability!!

  • I was told by my first rhumy that the enbrel or (benipali) that he put me on was to prevent the things that you can see in the more elderly people with RA the twisted fingers, the bent hands and so forth. I was diagnosed in 2009 and so far he right. Yes I still ache and get fatigued and can't use my hands as well as I could.but I can still use them and they're not bent. I do not think of myself as disabled but like you the thought is always there at the back of my mind. There will be a drug out there that will work for you and many new ones being discovered. My ccp was high when I was first diagnosed but its not bad now. Stay positive and be firm with your rhumy and insist you need to change your medicine. Incidently enbrel stopped working for me I was on one 50 mg shot weekly it was changed to two 25mg a week and it worked again. Hope this long reply helps a little.

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