I'm curious to know what the average length of time people have been living with RA on this forum...
How long have you been living with RA?: I'm curious to... - NRAS
I’m sorry if I’m jumping in here as I’m not helix helix . I was 38 when it all started. I’m 66 now but I’ve had remissions where it’s just burned itself out and I came off my meds ( diclofenac ). My last wonderful remission was 13 years. I’ve been very fortunate but I eat very healthily, lots of fruit and veg, fish and chicken and organic when possible. Lots of water too. For me rest and good quality sleep is vital. I do yoga as well and have reflexology when I can afford it.
I hope that helps a bit and that you don’t have to give up work.
It all came back 3 years ago😦. I’d had 13 wonderful painfree and med free years. I’d had loads of stress in those years with my daughter , my Mum’s dementia and looking after them and my daughter’s little boy and my job. I was amazed that it didn’t return. Then I had a loft conversion on top of all those and back it came , ‘gently’ with just a heel and then worse and worse with each month. I’m feeling much better since January. I’ve been very fortunate.
Well not everyone needs to use the stronger DMARDs. Thankfully many people do well just with things like hydroxy and in this case just NSAIDs.
But MTX would have been starting to be used around the time Kalimera was diagnosed, so would have been available had the doctors felt she needed it and if she wanted it. Personally I feel lucky that it was available when I was diagnosed, as despite trying all the lifestyle approaches my RA was not going to quieten down on its own.
MTX has been a real saver for me , brought me from being unable to leave the house and having a midersble life to feeling ok. The side effects are now too bad, but an amazing drug all the same.
I've tried all the usual self help, which makes no difference at all, not thst I needed too as I was very fit , with a very healthy lifestyle before RD.
Personally I think we are talkiing different disease processes, those that respond to the healthy lifestyle and those that require modern meds.
I'm sorry, but that's just a daft statement for a doctor. Sure drugs are toxic, and should never be used unless absolutely necessary. But MTX has been a life saver as a cancer treatment for 40 years, let alone giving many RA patients the chance of a painfree existence. I'm glad I'm not his mother or sister.
Fact also that chemotherapy in cancer is no longer automaticly applied because of long term adverse effects. In RA however the gold standard rules all too often automaticly. I had no choice if I wasn't willing to take MTX the rheumy would not help me and he was probably the best known rheumy in France. So there I was wondering what to do next😳
Well that doctor was even more daft! What a nonsense to reject a patient like that as surely if you weren't prepared to take drugs then even more important to be monitored regularly? Do you not have a rheumy now? As that would be dreadful.
We will probably never entirely agree, as I do think there is an important place for conventional drugs in modern RA treatment. What to me is sad is that there isn't a parallel strand in conventional treatment that helps support the patient with lifestyle changes to minimise drug use. I have been so lucky that all of my rheumies believe that this is important and encourage me to do so.
However I also know from trying to taper off drugs that my life without them would be hell. So I really can't imagine how you cope. It must be hard.
And just because one Dr says something doesn't make it true !
No matter how eminent they believe themselves to be, many very gooders just get on with it, without accolades.
Everything in life needs to be balanced, I would rather have say 5 years of good quality life on drugs , then deal with whatever, than say 10 miserable years stuck largely at home, not on drugs.
We also need to bear in mind that some people with RD get along ok, with an acceptable quality of life for many years, whilst others have a really difficult time, no matter what. A quality of life without meds is not possible for many.
Thank you. for your reply HH, Yes it is quite sad that I have been left pretty much alone with my GP as my only support. My second experience with French rheumies was even worse so I have been keeping my distance. Had I known what I know today I would have saved a lot of time and could have more efficiantly treated my RA from the start. Not without meds, but using meds in an a least harmful way in combination with a diet that supports best energy production in cells and supplementing with vit and minerals where needed. In my case diclofenac would probably not been enough but starting with Doxycycline and LDN and normalizing my body temp and estrogen/progesterone would have been a good first step. Since it has been shown that mono therapy with Doxy is just as effective as with Mtx and a much safer alternative.
I'm glad Enbrel is working so well for you and hope it will for a long time. All the best. Simba
I believe and it has been shown in real life that how we react to RA meds is very individual and fact being still that there is not enough knowledge or research on the actual effect on disease process longterm of the meds.It has been clearly shown that for many meds have had a significant effect on symptoms, but not also for a significant %age, and this IS the reality. It's always a question what risks we are prepared to take in our individual situation and what the risks in reality are. What I find being the hardest to overcome with using mtx in perticular is not knowing enough since it is a cytotoxic med that not only kills inflammatory agents but healthy cells as well, it increases oxidative stress with is a driver in RA and has many other effects that I can only see as working against health.There are many things that for me are too much of a riddle and too much of a risk.
I agree Simba. My best friend at school also developed RA. I’d lost touch with her when I was teaching abroad and she was v busy with little children and her job. When we got back in contact she showed me her laminated A4 of all the meds she was on for RA and asthma. I was shocked. There were so many. I asked about her diet and exercise. She was dismissive about organic food and trying to eat healthily. She died at 60 and her death certificate sited all the various side effects of so many drugs as a contributing factor. Very sad. I do feel consultants have a duty of care in highlighting healthy diet and exercise but all of my consultants ( 5 so far ) have never mentioned it.
I put it mainly down to aggressive drug treatment, as my rheumy ramped me up to top doses of MTX, Sulpha and hydroxy combined pretty quickly. With steroid injections during the first year until the drugs had got things under control. Plus I paid a lot of attention to looking after myself, so daily exercise (which helped the fatigue), sleep, cutting back on work to reduce stress, loosing weight, and eating properly. I did eventually give up work, as decided that other things in life even tho' a job I loved - but it was full on!
And the most important....I learnt to say NO. If you're lucky then you can live pretty normally, but behind the scenes you do need to work out whether changes are needed to make it all manageable.
29 long years. Never been in remission although I’m better than I have ever been since starting benepali, here’s hoping 😊
33 years. Started at 36 and will be 70 on 12th March. Am very cheerful though.
Had pneumonitis in lungs and episcleritis and euvitis in eye, and anaemia. Like you Rubyroo we miss ourselves. On second biologic, lots of dmards. Everything is sero positive.
Works doctor finished me at work age 53, severe ongoing exhaustion and RA escalating maybe not helped by menopause.
And the sun is out today, fabulous.
I hear you.....but I still try to stay positive for my family and grandson. It's not easy but at the same time I don't like feeling sorry for myself. Don't get me wrong, I do have bad days and am in excruciating pain and don't get out of bed. But the days I can get out of of bed, I try to make the very best of it to weigh out my bad day (s). That's how I cope with my emotions with this illness. 😎
Just coming up to 41 years...and hasn't treatment changed for the better in that time! I've been very fortunate to have had aggressive treatment but I have also worked very had to keep mobile and fit. It is all catching up a bit with me now, but I am still fitter than a lot of people at my age although I could certainly do with less pain and stiffness!
Five and a half years for me. After the initial settling period of about 18 months I’ve been pretty much under control.
Five years ago I couldn’t walk more than about 100 yards (or metres for the youngsters!!) but now I can manage 10 miles on a good day.
I think I’ve had it much longer, but being seronegative I don’t think it was picked up.
12 years, the first 10 settled quickly on hydroxychloroquine after the initial dramatic flare led to prompt diagnosis... 10 years later it hit me with a vengeance following some other health issues and a surgical menopause, and methotrexate was added to the mix. For me I think the hormone changes of menopause have had a massive impact on disease activity. On a positive note, I’m a complete convert to daily yoga (with an app in my own home)... it makes a huge difference to my mobility and my sense of well being, also boosts me to know I’m being proactive in looking after myself! I also have to stay off bread, if I give in to temptation I pay for it within days. 😊 🧘♂️
Yes, I've had so many different types of tablets, in and out of remission but mostly out thank goodness, had lymphoma 6 yrs ago, then RA came back with a vengeance so now on leflunomide so OK on that, hands very deformed but that happened in the first year, so pleased that diagnosis and drugs have improved for all the newbies, I deal with it by being positive, 😊
Since 1990 when I was 23. Have had more good years than bad thanks to fabulous Rheumatologists. Have been on biologics for approx 13 years so was very lucky to be prescribed them when they were fairly new. The last 12 months have been pretty rough and I’m back on steroids for the first time in 13 years. Remaining hopeful that things will get back under control soon though.
There is so much more available now then when I was first diagnosed the progress has been amazing.
Hello.. Very good interesting question!
Me.. 33 yrs.. Still. Under 50, so got quite young
Just thank god every day for my rheumy team, good medication and surgeons!
In the 80s there wasn't much in the way of any of that.. And the outlook was very bleak.
I don't think I can remember what normal is.. But 'mostly' am ok with my lot.
Your life does change to varying degrees.. But hey.. A completely healthy person may not appreciate what they've got, most probably don't! As long as in our minds we appreciate what we can do (obviously whilst well controlled), then it's OK.
Bless you.. 5!? God at least I got to my teens. Bless you. X
Jojo, my partner who is very supportive, my lifeline at times, commented the other evening whilst leaving my flat that he wished he had brought his car as he couldn't be bothered walking the 1 mile home.
Before I realised what had said, it was out...goodness what i'd give to be able to walk that mile.....it nearly reduced him to tears, after a cuddle he was fine.
30 years, I was diagnosed in 1989 at the age of 39 and when my children were 11 and 14. I have never been in remission but managed to work for the NHS sitting at a desk in an Office until retirement. At times I had to have time off and sometimes my husband would drive me in and collect me. He is an amazing guy who knows exactly what I can and can't do. I have taken a huge amount of different medication in that time, but still manage to keep smiling and see the funny side of my grandchildren's comments. One aged nine who I love to play (badly) the recorder with, always comments 'Nana, cover the notes' as my fingers miss a note. We laugh and start the piece again. Another aged eight who loves playing 'Uno' remarked because I cannot turn my wrists he could see every card whilst dealing so 'could he choose his pile of cards?'. Take good care all of you x
Just over 22 years, really aggressive, so I'm left with deformity and burnt out joints all over. Worked my way through all the DMARDs, had 10 years on Humira now switched to Benepali, still need 3 steroid injections a year and never been in remission.
Have also had several foot surgeries and both knees replaced.
I've been a single parent the whole time so not had much support and my children have suffered as a consequence of living with a sometimes barely-there mother.
When I'm having a private pity party, mourning the great career and lifestyle that I used to have, and hating that my life has become reduced on so many levels, I do remind myself that there are ALWAYS others worse off. I can at least divide my life into everything I had and achieved before RA and then what came after; my heart breaks for those like you who've had it since childhood and never known what it is to be free of this dreadful disease. I wouldn't wish this on my worst enemy. Well, maybe one or two...
17years this July , have had many biological treatments which affected my white cells so had to stop them and have only painkillers ! On the 1st May had a hip replacement which was successful then a new treatment was agreed for the ra ,one you take by tablets but unfortunately following a mammogram it came to light that I have breast cancer so no treatment for the ra in the immediate future, the surgery was 5 days ago will be followed by radiotherapy ! In a years time it will be history ! . I am resting, my cat is in cattery and am looking forward to the future and the summer . I wish you all better health
Just over 3 years - at the age of 60. It came on really suddenly, over 3 weeks or so, although xrays revealed there was already damage in my hands and knees suggesting it had been around a lot longer. Has been well controlled since a month or so after diagnosis- first with steroid pills and then adding in 400mg hydroxychloroquine, and mtx. Steroids dropped within 6 months and hyd stopped last year due to eye problems. I am now on 12.5mg of mtx a week but am able to skip a week occasionally if I’m ill or on holiday. Not recommending that btw - my choice, not approved by rheum team!
I seem to be mostly in remission atm with just a few twinges but suffer with fatigue a lot of the time. Luckily I am retired and have very few things that HAVE to be done.
I am seropositive (rheum factor snd CPP) and would be interested to know if others are seropositive or negative.......
Hi Nanna71! Bless you and thank you for your kind words, but I am grateful for the life I have. I was diagnosed at 19 years old and I am now proudly 52. I am married, have two amazing kids (well not kids as such - 24 year old daughter and a 16 year old son, I qualified as a solicitor later in life than originally planned but did it! RA is a massive part of my but definitely has not stopped me. I have had both shoulders, both hips (the right one revised 4 times!), a total femoral replacement, both knees replaced (one revised twice), a left ankle fusion, and left tibial plating - phew!! Oh and a partial nephrectomy, and tendon reconstructions on my left hand! In spite of all that I have had and am still having a great life. I am a living testimony to the fact that what doesn't break you - in my case quite literally - makes you stronger. Plus I have a strong faith and belief in God that helps at really horrible times. The finally thing is that I am blessed with the BEST husband in the world who knows me inside and out and is always one step ahead of me in terms of making sure I am okay. For all of this and so much more, I am eternally grateful! I hope your story is not quite so traumatic and that you still have reason to smile! Hugs! x
Goodness you have been through a lot Foofsie. Can I message you about your hand tendon reconstruction please?
What a testimony you have and so encouraging for me. I have also a like faith in God which may be the reason I haven't driven off the nearest cliff. I have less than 6 months in, with RA diagnosis only 3 months old. Also trying to figure out what is the RA and what is the natural aging process (soon to be Nanna72). I'm just starting to come out of 'horrible times' and think I may survive even this. Although, going home to be with the Lord is looking quite good now. 😊
Hang in there! It doesn't stay horrible for too long - I hope. I have had some pretty dark days and can't be blase about those however, I do believe with the right support of a great medical team that understand not just RA but also what you want to be able to do with your life helps massively. Stay strong and message me at anytime you feel the need to vent or just chat to someone. I'm always available.X
Thank you. My medical team counts one, but he is doing everything he knows to get this into remission and tells me what to take to take to circumvent the drug side effects. Every time he goes in a different direction because something isn't working he makes a new plan and asks me if I agree with his plan. I like the way he is helping me with it and not bulldozing the treatment. He's the best. He's an Internist specialist. There's no such thing as a rheumatologist within 5 hours of where I live and where I live is in the mountains of British Columbia, remote ranch country.
I'm not whining here, just supplying some facts. So the thing about the cliff - they're easily driven off even if you aren't intending to.😬😊 Thank you again for your concern. I probably wouldn't do it in case it hurts me and I've already had my serving of pain, I think. 😊
What an inspirational journey- you have suffered so much but achieved so much with a great positive attitude! I really admire you. My niece was diagnosed at 19 - 12 years ago. She too is always positive, despite the limitations she has and the permanent damage to her joints. I too am determined not to let RA define me but then was diagnosed at 60 (3 years ago) and my symptoms are well controlled so far.
I finally received a diagnosis in 2002 and have been prescribed an escalating cocktail of medication since that time. I am currently on Methotrexate and Benepali injections once a week plus 3 x Folic Acid tablets with the occasional combination of Ibuprofen and Paracetamol if pain is extreme. Mostly I cope, I work part time and swim about three times a week so life is not bad!
Yes Mmrr, sorry not replied forgot. My memory is bad ha ha. I’m ok and just get on with life and I’m still working 4 full days a week and have to travel 45miles a day but not so bad. At least I’m still alive and there are always others worse off than I am. I’m starting my fourth biological soon 4 weekly infusions so that may help. I think a positive attitude helps a lot as well and I try to be happy. I’m off to Marjorie on Monday for 4 nights with my sister in law and hubby is staying behind to care for elderly parents. 97 & 94 . They are so lovely bless them. My sister in law needs a break so this is just what we need. Lots of stress free time and relaxation. Thank you for your kind thoughts. Keep well and happy.
Love Typsey 😊😊😊😊
She would have done but Celebrex suited me & took away the pain. When the surgery stopped GP’s prescribing it due to a scare in the U.S. due to a heart problem scare, she did refer me. It was then I think everything else kicked off (osteo, RD, back, fibro, etc).
I still have an ex work colleague who has never taken anything but Celebrex & he has been fine & able to carry on working. xx