How long have you been living with RA?: I'm curious to... - NRAS

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How long have you been living with RA?

Mr_Judge_Benny_Hinn
Mr_Judge_Benny_Hinn

I'm curious to know what the average length of time people have been living with RA on this forum...

151 Replies
oldestnewest

15 months and still getting use to it.. one day the drugs will work..

Eleven years this year.

A long time to have a crappy disease!

Yes, but is has been well-controlled by Humira. My grandmother suffered it from her twenties until she died at about 90 in the days when there were no biological treatments, just paracetamol and aspirins etc. I never realised at the time how tough that must have been for her.

That’s very heartening to know she lived to a ripe old age. How bad was her RA?

Eleven years this March, been in remission since early 2013.

9 years...been in remission for most of it.

How did you get there? In remission I mean. Did / do you have a particular routine that you feel helped? I have a full-on, full time job (which I may have to leave) and 4 yrs in, I just can't get there.

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.

Did you manage all that time just on diclofenac? Wow!

Yes I did. I only took it when I had pain. Now it’s linked to increased stroke and heart attack risk so I’m on Sulphasalazine now. Diclofenac enabled me to keep working when I had 2 awful flares.

So lucky that your RA didn't progress in all that time....hope it continues to stay that way for you amd you can stay in remission for ever.

(I took diclofenac on top of all my other meds, but now I'm on a biologic thankfully I don't need to use NSAIDs any more)

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.

Looking after someone with dementia is so tough. Hopefully you've turned another corner now and will be ok. Good luck. It's so nice when someone can live comfortably with this disease.

So it does happen, and I think Kalimera 57 was actually lucky she was not put on Mtx and the rest, since it was not available.

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.

Yes I agree Simba. I was lucky. I taught a dr from Egypt during one awful flare. He thought I’d had polio due to my bad limp. I mentioned that my consultant wanted to put me on methotrexate and he said he wouldn’t put his mother or sister on it as it was so toxic.

Mmrr
Mmrr
in reply to Kalimera57

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.

Kalimera57
Kalimera57
in reply to Mmrr

Yes possibly we are Mmrr. Ive been lucky I know that Diclofenac was such a great help in the busiest time of my life. And incredibly lucky that I’ve had quite long periods of remission.

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.

Mmrr
Mmrr
in reply to helixhelix

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.

And I also believe rheumatology should be honest and give information on pas that have used the meds for several years. The benefit risk ratio is not properly opened to patients and does not in my view give a realistic view of the situation

Mmrr
Mmrr
in reply to Simba1992

I think you are probably aware, I absolutely agree on this point. The mystique of medicine is unacceptable, self serving and patriarchal, and that's me being polite 🤣😂

Simba1992
Simba1992
in reply to Mmrr

😉

Mmrr
Mmrr
in reply to Simba1992

And that's fine for some, but for others, myself included my life would be intolerable without the meds. I accept the unknown to be able to get out of the house and participate in life. Sitting at home, ill and miserable, but drug free isn't a good trade off for me.

Thank for jumping in :) good advice, it all helps..👍

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.

Thanks for this.. Gives me hope..

Hidden
Hidden

29 long years. Never been in remission although I’m better than I have ever been since starting benepali, here’s hoping 😊

Mmrr
Mmrr
in reply to Hidden

What a long time for you. Fantastic benepali is giving you relief.

Hidden
Hidden
in reply to Mmrr

Yes I was quite surprised 😊

I was diagnosed 3 years ago

Four years. First aggressive. Then sort of setteled down now the past 6months less symptoms and inflammation.NSAIDs became redundant after two years. Have not used RA meds.

I’m coming up 5 years and quite well controlled with Humira and Mtx but have started Alimunumb as it’s cheaper and although they say it’s just the same we will see

Sixteen years. I have an aggressive form of RA that was fairly well controlled for the first 12 years, but complications due to more recent chronic health conditions has caused problems effectively treating the disease. :-(

15 years!! it wears you down, not just physically, mentally too, and employers don't understand what we are living with!!

so far about 16 months.........and had it far too long already - missing my old self !

Sjhoney
Sjhoney
in reply to Rubyroo1

I think you’ve hit the nail on the head there. It feels like you’ve lost the person you were.

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.

Mmrr
Mmrr
in reply to sunnyweek

Inspiring

I have been living with RA for 22 years already. Not fun but trying to stay positive! ☺

31 years :-)

31 years and you can still raise a smile! :-O I've had it half that amount of time and I'm a right miserable old sod! :-( .................. ;-)

I'm the great pretender. RA isn't too bad when you compare it with OA, Osteoporosis, Vasculitis, Bronchiectasis, cancer, Sjogren's, or all of them at the same time. :-O

I suppose that's a good way of looking at it. I wasn't really serious hence my winking smiley at the end, but I do find it difficult keeping my spirits up on times.

;-)

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. 😎

20 years ...stopped counting now!

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!

Mmrr
Mmrr
in reply to oldtimer

Wow !

28 years, diagnosed with aggressive rheumatoid arthritis at 25. Been in remission at various times, have osteoarthritis in knees now, one replaced waiting for the other. Rheumatoid arthritis controlled fairly well by rituxamab infusions.

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.

Mmrr
Mmrr
in reply to JEM95

Similar story to me, I'm just about to begin biologics, sò your story gives me hope. thanks.

Diagnosed at 42 now 64 so 22years 🙈🙈 and gradually getting worse. Been on a huge list of oral meds, anti TNFs DMARDs and now BIOLOGIC’s we try any new drug that gives us a quality of life, think the ageing process makes things worse, but chin up & keep smiling! 🤪😜🤗x

Diagnosed RA in 1995 when I was 35 so that's 24 years ago and I'm now aged ... We'll never mind!! 😱😁

Eleven years for me, a baby by comparison to some here. Diagnosed with both RD & OA at 48. You're right, I also live with it, or rather it lives with me, I'm no sufferer. You?

14 yrs RA AND OSTEO

I was diagnosed at 5 years old, I'm 48 now...

Good lord! You can't have much recall of what it's like not to have RA. How are you these days?

I have a lot of joint damage...But, I'm still standing...Yeah, yeah, yeah!

:-)

That is a long time.

So young, too young. A long time now then. 😐

A very long time for you, 33 years for me. I was dx with Lupus first and treated heavily with steroid and steroid injections. Have Erosive sero- negative RD. Many add on's, RD mostly controlled with Humira, mtx, low dose pred, naproxen, also have Hasimoto's amongst other problems. X

Mmrr
Mmrr
in reply to Gigi71

Wow

A mere beginner 2 years 2 months, possibly undiagnosed for longer.

What a great question.

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. 😊 🧘‍♂️

What yoga app do you use? I should be doing this.

It’s called ‘daily yoga’, you can sign for a 10 day free trial. If you don’t sign up for more they start sending discounts. There are also lots free on tube, but I like the app a lot x

3 years. Came on rapidly over a three week period and couldn’t walk, couldn’t do anything. Took Pred so I could have a life. Been on biologics for 5 months now and much better. Phew!

23 years, I was 14 when I was diagnosed with JIA

Shalf
Shalf
in reply to ruth_p

That must have been difficult

Ruth. X

Dx 1971, age 6, so into my 48th year.

Mmrr
Mmrr
in reply to BoneyC

48 years, goodness. One very long time. regards.

As far as I can tell...You're the longest so far In the replies, unfortunately, no prize! I got it as a kid at that age too...wrecked my childhood!

32 years xxxx

A lifetime CTD13

4 years still getting used to it.

Diagnosed 1974 aged 23, now 67 so 44 years. Badly damaged by erosive disease but condition more stable now due to improved treatments. Just born too soon!

Best wishes all.

Pam

Mmrr
Mmrr
in reply to Pam-51

That is a long, long time Pam. Its good to know you have better treatment now.

Hi, almost 3 years since diagnosis. Still haven’t found the right meds or come to terms with it.

10 years ( 62 next month ), Auntie Margaret had RA , ( when diagnosed at hospital Rheumy Dr. told me I have the progressive and aggressive type ). Despite taking different medications over these years, the RA has definitely worsened over the past 3 years.

I was told the same. I've had medication problems this past few years, but even when I didn't it was still progressing albeit more slowly. I believe my grandfather had RA.

2yrs - Diagnosed aged 62 in 2017. No family history. Recognise now had some minor signs that would accept as part of aging process prior to this but otherwise fit and healthy. Active life.

37years - a lot of joint damage, a few operations. Not in much pain these days thank goodness.

Mmrr
Mmrr
in reply to zonk

A very long time

39 years and still learning, but I'm taking it a bit more seriously than I did when I was in my late teens and twenties 😊

Mmrr
Mmrr
in reply to Plumcrumble

A very long time

Plumcrumble
Plumcrumble
in reply to Mmrr

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.

8 years-unfortunately it has never been controlled/managed and remains active despite many medications including biologics!

Mmrr
Mmrr
in reply to lolamylo

Aaarrgghhh

Just waiting to start biologics

8years for me, with a dramatic flare, though probably ignored earlier warning signs. But I was in my 60s - I’m in awe and admiration of those of you who’ve lived with RD from childhood, through working life, childrearing, family life etc etc.

And you’re still smiling!

Respect!

35 years - the first 30 were generally OK, next 4 were a bid dodgy but the last year has been bloody awful!

Mmrr
Mmrr
in reply to Maggsie

A lifetime

Hope it works well for you.

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

Jo xx

Mmrr
Mmrr
in reply to jojo_71

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.

jojo_71
jojo_71
in reply to Mmrr

Absolutely Mmrr.

I wish everyone could have arthritis for a day, well maybe a few days.. 😉Then when they go back to normal, they would be the happiest people ever!

No one knows what you got, till its gone! (is that a song!? 😁) xx

Mmrr
Mmrr
in reply to jojo_71

If one more person tells e how well I look I'll scream at them ! I do try to be patient but it's exhausting to listen too on top of the fatigue.

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

Have had RA since 2002 and had all sorts of meds

Hi

I’ve been living with the pain for about eight years but only got it diagnosed about 18 months ago after a really long fight with Doctors telling me it was the early menopause.

20 years for me

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...;)

Mmrr
Mmrr
in reply to MissMinto

There is no pity party, just people with chronic degrees of Ill health trying to get by. Be kind to yourself , it's just fine to be 'soulfish' and look after yourself. You are amazing, a single mother bringing up children with RD, you have my respect.

MissMinto
MissMinto
in reply to Mmrr

That's very kind of you Mmrr, thank you.

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

helixhelix
helixhelix
in reply to 4seasons

Hope your recovery is swift and smooth...

4seasons
4seasons
in reply to helixhelix

Thank you helixhelix

Started to get symptoms about 11 years ago and then they suddenly remitted. They returned 3 years ago and continued getting worse. I was diagnosed in 2016.

I’m amazed at how long many have been fighting this disease! Wow! Strong and determined!

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.......

Mmrr
Mmrr
in reply to Bookworm55

sero negative

34 years in August this year and I have never been in remission sadly.

Nanna71
Nanna71
in reply to Foofsie

Okay, I just saw your post and I feel so sorry for you. I don't know how it could be bearable for you this long. 😦❣

Foofsie
Foofsie
in reply to Nanna71

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

Mmrr
Mmrr
in reply to Foofsie

Quite a story Foofsie

Foofsie
Foofsie
in reply to Mmrr

This is true but hey, I'm still here and living the dream!

Hidden
Hidden
in reply to Foofsie

Goodness you have been through a lot Foofsie. Can I message you about your hand tendon reconstruction please?

Foofsie
Foofsie
in reply to Hidden

Hi! Absolutely! Of course you can. x

Hidden
Hidden
in reply to Foofsie

Thank you x

Nanna71
Nanna71
in reply to Foofsie

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. 😊

Foofsie
Foofsie
in reply to Nanna71

Hey Nanna71

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

Nanna71
Nanna71
in reply to Foofsie

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. 😊

Foofsie
Foofsie
in reply to Nanna71

Hey Nanna71

I did wonder where you live. I hope sometime soon you are able to get access to real help that matters!

God bless you! x

Bookworm55
Bookworm55
in reply to Foofsie

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.

Foofsie
Foofsie
in reply to Bookworm55

Aww thank you! And good luck with your journey too - it can be a bumpy ride but what a ride! :-)

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!

I’ve had it for 33 years and still suffering .

Mmrr
Mmrr
in reply to Typsey

A very long time Typsey

Typsey
Typsey
in reply to Mmrr

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 😊😊😊😊

Hi there 25yrs and still trying to get used to this horrible disease 🙄

3 years too long! Just been changed to Humira from Baracitinib. Bloods are good but MRI showing active inflammation and bone damage on injured hand :(

I don't know how you are going to get an average unless you do the math but my time in is almost 4 months.😵

Only one year at 64. Reading the replies makes me feel incredibly lucky. I salute those that have had a lifetime time of RA especially those from an early age.

Just 9 months and I struggle daily. I am 64 now, I really feel for the people that have been struggling with it for so long.

I was diagnosed by my GP doing tests in approx 2005 & she put me on Celebrex. When she was told she was no longer able to prescribe this she referred me to the Rheumatologist, in 2007, who started zapping me with all the usual meds. 🙂

Mmrr
Mmrr
in reply to TempleofDoom

So your GP did not refer you for 2 years ? any reason why not ?

TempleofDoom
TempleofDoom
in reply to Mmrr

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

Only about 6 months. It’s been an uphill battle.

Almost 4 months, though I've had joint pain & swelling for over a decade, put down to having Sjogren's. On 15mg/wk mtx and 10mg/day Prednisone. I'm still having regular flares but I'm hopeful mtx will help soon.

Onset was 1972, diagnosed in 1973. Had lots of treatments and surgery. Now on Rituximad due to failure of Humira after ten years.

A long long time 🌟

35 years RA Knee replacement 2years ago elbow has self fused and wrists partially fused. Last year diagnosed with Polymyalgia Rheumatica now on prednisilone but otherwise I’m fine 😊

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