How old were you when you were diagnosed with RA? - NRAS

NRAS
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How old were you when you were diagnosed with RA?

Agoodlife
Agoodlife

Would very much like to know if you were over 65 how Mtx worked for you and what side effects you had.

56 Replies
oldestnewest

If I remember right I was 45yrs old.xxx

Hidden
Hidden
in reply to sylvi

45 here

I was 65 and had adverse reactions to the main DMARDS including MTX. As I’m sero positive and my RD was very aggressive I was put on biologic drugs that seem to be working.

Thank you for your reply. May I ask what biologics worked for you?

I’ve been tried on two biosimilars. Benepali (Etanercept) was not sufficiently effective for me as I could not take MTX with it. So was switched to Truxima (Rituximab), just started my second cycle, and that seems to be working. Yippee!! Hopeit will give me sufficient relief that I will be able to start a Prednisolone taper programme soon.

Thank you. Personally I do not think it was the lack of Mtx that made Benepali ineffective but the problems with this biosimilar that doesn’t seem to be as effective as the original Enbrel for many people.

I was 38 and going through a lot of stress. I’m 66 now.

RADOONE
RADOONE
in reply to Kalimers65

I was 57 I also had a lot of stress that I am sure triggered it but through regular meditation yoga and mindfulness and taking 20 mg MTX once a fortnight I am back leading a relatively pain free life again .i take 5mg prednisone if I get flares and just do a 5 day course . There is light at the end of the tunnel sending you peace 🙏🙏

Kalimers65
Kalimers65
in reply to RADOONE

Thank you Radoone. I’m a great believer in yoga too - it has helped me enormously. I’ve been very fortunate as well and I’ve had 3 remissions with no meds. 2 remissions were from getting flu and my last remission just seemed to happen. It lasted for 13 years - I was almost doubting that I’d had RA. I’m about 85% vegan now and it’s helping.

I was 58. 61 now on 3 demards, pain relief and steroids.

I was diagnosed at 57 but suspect that I have RD for many years prior to that.

MTX worked well, joint wise, but the side effects meant I had to stop it. I'm now on biologics.

Agoodlife
Agoodlife
in reply to Mmrr

Thank you Mmrr. I have been thinking and doing research on the effects of Mtx when you are diagnosed when under and over 65 years and what biologic has worked when over 65 when diagnosed?

Mmrr
Mmrr
in reply to Agoodlife

Are you a researcher ?

Agoodlife
Agoodlife
in reply to Mmrr

I think we Ra folks all should be before deciding on what meds we will take 👌🤓😊

AgedCrone
AgedCrone
in reply to Agoodlife

Purely out of curiosity what research have you done & where did you look for the information?

Did you find anything unusual about Mtx being prescribed to those over/under 65?

I (65+) took it very successfully for 7 years...then it stopped being effective.

I have never got the impression from posts here that apart from people who are 65+ with other serious conditions where it’s not a level playing field, that there is a difference in its effectiveness......would be interesting in hearing what you have found.

KittyJ
KittyJ
in reply to Agoodlife

What does your research show Agoodlife? (I'm under 65) Id be interested to hear😊

I was wondering why you were asking?

I restarted on methotrexate with very high inflammatory markers, rather unwillingly, after a period of no treatment. I had been told that I was in remission and didn't need any treatment (despite occasional flares treated with steroids!) and then had a massive flare.

Personally, I didn't get on with it on the second attempt either as the side effects for me were unacceptable. But lots of people find their disease well controlled but methotrexate with only minor problems.

Agoodlife
Agoodlife
in reply to oldtimer

Thank you for your reply. See my reply to Mmrr

Hidden
Hidden

Sorry, only 61yo, hope you find some good answers, cheers Deb

I was 36, I'm 68 now and have taken MTX for about 15 years along with Leflunomide.

It was about 3 months after my 30th birthday. I am now 34 and finally have hit a decent stride in terms of the right meds and am feeling much better.

Hi I was 49 when diagnosed but I think I had it when I was 37 but was misdiagnosed. I have been on mtx since diagnosis (3years)did well no side effects as such until this year when RD spiralled out of control changed from mtx to injections 6 weeks ago still having problems was supposed to start a biological but now suspect Sjögren’s syndrome need to be tested for that first.

I was 6 in 1971.

Kalimers65
Kalimers65
in reply to BoneyC

That’s awful! How have you managed?

BoneyC
BoneyC
in reply to Kalimers65

... physically all my joints are wrecked and some replaced or fused. Mentally, it has taught me resilience.

Kalimers65
Kalimers65
in reply to BoneyC

If I had a magic wand I’d send you a very long remission with no drugs . You do deserve it.

I was 32 when I was first diagnosed. I’m now 70 still under the rheumatologist. I have taken MTX ,Leflunamide, etc, all of which caused more problems with my health.

I’m now on the anti-malaria drug - the trade name fails me at the moment, and Etoricoxib, which together works perfectly well for me.

I was diagnosed at 56. Injecting mtx and taking hydroxychloroquin is working very well for me 2 years on.

Interesting question. I wonder how the answers will help?

I was 42, sero-positive, I think I had it for a long time before that. I took Hydroxychloroquine on and off for years. Also I have been vegetarian since I was 30, I really believe that is one reason my RA has been and still is much less damaging that my very strong sp results would indicate. Of course, I can't prove that but there are research studies which support it. I couldn't tolerate Methotrexate or Leflunomide, then also had problems with Sulfasalazine. I am now on Amgevita.

I am now 62 and have spent a lot of time researching RA and diet, and I have tried eliminating foods, and various diets I have designed myself based on research. Many work for short periods, none for long. Fasting can stop a flare in its tracks, but only in the short term, a week or two at most. Most interesting and fundamental for me, is that inflammation feeds on saturated fats. I eat virtually no saturated fats, follow a vegan diet most of the time, and although my disease is active, my swelling/inflammation is not very painful, intense nor widespread, not affecting more than one or two joints at a time. A vegan diet or fasting does not cure RA but it is my personal belief that it helps keep the inflammation and damage to a minimum.

Oops.... sorry, I got a bit carried away there...

Hope you find the answers you are looking for

AgedCrone
AgedCrone
in reply to Brushwork

On the other hand I have sero+ RA and I eat & drink what I like & have never found (in 20years) any food group has any effect on my condition.

I have no serious joint erosions & have only had surgery for carpal tunnel..& that was not necessarily RA related.

When first diagnosed I did ask my rheumatologist if I should add/eliminate anything from my diet ...he replied “there’s no clinical evidence proving diet has any effect on RA..but maybe lay off too much red meat”.

I honestly think if you believe eating in a certain way helps your disease...definitely stay with it. But eating foods you don’t enjoy searching for relief when there is no clinical evidence to prove they MIGHT help....is to me a miserable existence......& to me would be really stressful.

Brushwork
Brushwork
in reply to AgedCrone

I was vegetarian anyway, and there are small clinical studies. Also my Rheumy supported the ‘fat feeds inflammation’ theory as does Dr M Mosley.

We each follow our own path, I was and am simply explaining my own

Amy_Lee
Amy_Lee
in reply to AgedCrone

AgedCrone, I agree very much with you on this! I did the same and finally found that I am okay with all kind of food.

J1707
J1707
in reply to Brushwork

We all try to find things that work for us very much trial and error and wonderful when something works

I’ve been 85% vegan for about 2 months and the swelling and pain has definitely improved. Did you do the Paddison Programme?

No, I wouldn’t pay for something I can work out for myself. I just follow my own eating plan, remaining almost vegan and sugar free.

Yes that’s what I think too.

Hi - I was 66 when diagnosed with RA, but I suspect that I had mild symptoms some years before, but thought it was just old age!

My specialist put me on hydroxychloroquine and prednisolone for 2 years until I had a series of bad flares. I'm now on methotrexate, folic acid etc, the methotrexate made a big difference when it kicked in and I now feel almost like I did pre RA diagnosis.

I was 67 when i was diagnosed nearly 3 years ago. I was advised not to have Mtx as i have Bronchiectasis so am on sulphalazine which seems to be working well for me.

Bacharia
Bacharia
in reply to joycen60

I was diagnosed at age 70 and I take MTX successfully. I'm now in remission. It's odd that you were advised not to have MTX because of the bronchiectasis. I also have it and both my rheumatologist and my cough specialist said it's OK to take MTX.

Agoodlife
Agoodlife
in reply to Bacharia

Very strange indeed, All I have read from research from lung specialists say you shouldn’t. Did you start Mtx right away when diagnosed? How long have you been on it? What meds are you on now?

I was 55. I was put on methotrexate straight away, when I only had very mild symptoms - a swollen finger. I've had a difficult relationship with it . I really hate taking it so stopped after a year. Went back on it but it stopped working. So now I'm on Tocilizumab which is reasonably effective. I'm supposed to be taking mtx as well, but I don't.

I was 56 but had symptoms for a long time was told by the doctor I was with old age doesn't come on it's own. Moved house and moved doctors went to see a doctor blood test done and referred to Rhuemytology. Been on methotrexate for over a year only side effects feel sick sometimes after taking it on 20mg.

I was 67, and started last October. Had first IM steroid injection in February and had three more since.

Started on Hydroxychloroquine which didn’t help and down to three tablets a week. Started Sulfasalazine in August, and had bad side effects when increased to 4 tablets a day, then stopped after chest infection. Started on two a day last week and Rheumatologist wants to get me on to just three a day. Sero positive RA and bronchiectasis.

34.

I was 65 when first diagnosed with RA. I have been on MTX injections for 4 years, but have repeated infections so am now off all drugs.

Agoodlife
Agoodlife
in reply to Lyneal

I can see that this DOES make your quality of life better.Everyone really needs to choose but in order to choose you need information and not just the gold standard offered to you.

Are you taking this survey to publish a paper or something like?

Agoodlife
Agoodlife
in reply to Nanna71

Actually not. It’s only for myself. Trying to keep my life as good as possible.Not choose treatment alternatives that make my quality of life wosre. I have found that perhaps it’s an idea to follow what makes you feel good is a better way to start than the other way around.Having as much knowledge and listing to oneself is in my view the only way to go.

Hezekiah
Hezekiah
in reply to Agoodlife

Did you mean to write "listening" here rather than "listing"?

Wecome back aka Simba .. I remember many helpful [4me] posts from you.

to summarise... @ 56 retired after stress event

Sorry [ pressed wrong button LOL... to continue

'@ 57 developed severe PMR for approx 12 yrs

@ age 72 another stress event [near drowning and etcetc]

developed severe pains and diagnosed at 73.5 with +ve RA.

MTX by mouth, later injections plus SSZ... cough... MTX w/drawn, into wheelchair and 25% loss of lung function.. did exclusion 'diet' wheat, dairy , meat etc ...

SSZ effects were different but equally disruptive to my emotional state and well being. 50% dosage of SSZ agreed from then on and lungs recovered,after 6 months or so, out of w/chair after 2/3 months

@ age 73.5 offered TRUXIMA [biosimilar of RTX] and so far doing pretty well.

interesting question... wish NRAS cd do research and published !!

all the best!

AgedCrone
AgedCrone
in reply to GranAmie

Did you have lung problems before you took Mtx or any other Dmard?

GranAmie
GranAmie
in reply to AgedCrone

No, not at all :)

Thank you for your kind word GranAmie😊🙏🏻Stress from inside and out does seem to play an important role in RA.

Thank you for your reply explaining your situation. Sounds really good that I spite your difficult start you found help. Hoping for the best. Do be in toucth,

Stress was also related to my RA and I do believe also age. I was diagnosed when 68.

i seem to recall you as in France?. As this thread may be followed by others interested I wd like to add that B12 helped dispel my 'brain fog', and also megamix of trace elements / minerals... copper, iron, boron, magnesium and more, also calcium as my hands / wrists are doubly hit.. osteo there now, too. Es la vida...xx

45. With symptoms about a decade.

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