Would be nice to know

As I have been recently diagnosed to the exclusive RA club I have found it a bit bewildering as to all the different ifs and buts. Whilst I am now aware that everyone is different and no one has the same journey it would be interesting to know from some of you who have been diagnosed for a while the following (only very brief information)

Diagnosis year

Treatments you have tried

What worked

How long for

What happened then

Quality of life now

This will give us newbies an insight into what is possible, what might happen, what struggles we may have and what we can look forward to.

Thanks in advance

45 Replies

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  • Initially my thoughts are omg I don't want to put you off as some people are diagnosed the methotrexate equals fine . So don't be scared by some answers here as you say we are all different !!

    Diagnosed within three days

    Steroid infusions and Mtx straight away

    Started DMARDS started plaquenil Mtx sulphasalasine leflunomide

    Started biological enbrel humira rituximab remicade , humira and rituximab were best for me but I got side effects of lots of infections ..and drug induced lupus with remicade but it went away when the drug stopped , thank goodness for follow ups ! My family got very disabled with our rare form of RA and I'm so grateful for the treatments we have now, I have very little joint problems .

    Steroids orally daily with plaquenil sulphasalasine and commencing toczilimab infusions next week .

    I have a rarer form of RA that is difficult to control but I get good and bad days but don't let it stop me doing what I want !

    Flaring at the moment and had steroid jab on Friday but I still managed by getting someone to drive me instead of me being chauffeur to others , to see my sons beautiful fiancée try wedding dresses yesterday and block out the pain !!!

    It gets better as you get more used to it , as I said think mine is a bit extreme lots of other people are one tablet then controlled!!!

    Good luck but please don't get disheartened by my answer!!

  • Hi TTCC and welcome to the party :-)

    Diagnosis year - 1986

    Treatments you have tried - Sulphsalazine, Methotrexate, Enbrel + many, different anti-inflamatories over the years

    What worked - All but none as well as Enbrel

    How long for - Some years, can't remember as I didn't make notes at the time :-)

    What happened then - Change of Rheumys over time and my latest one, who is brilliant has got me on Enbrel which I've been injecting since end of 2011. This is a wonder drug for me.

    Quality of life now - great! I have had 3 new knees and l/h knuckle replacements but with Enbrel in my system, Mr Legs, 2 sons and wives and 3 grandchildren I have nothing to complain about.

    Hope this helps.

    Love, Legs x

  • Diagnosed 2010, in complete and immobile melt-down with nearly every joint inflamed, swollen etc etc. It was awful and agonising.

    Started methotrexate, then hydroxychloroquine and then sulphasalazine. Together they worked - took about a year. Steroid shots along the way to help me through that year. Side effects to start, some pretty unpleasant, but now all fine. Still on this triple combination.

    Also take folic acid & omepradazole. And have Arcoxia (a NSAID) and a cupboard full of painkillers to use if needed. Which is not that often now and usually my own fault doing daft things.

    Quality of life is fine. In fact the RA is the least of my worries. From what my old rheumy said (just moved to new one) my experience is very much that of the majority of people diagnosed with RA now. People like Allanah and Legs are the unlucky ones, but a minority experience.

  • Ye I did stress that !!

  • I know you did! I just remember how scared I was at the beginning and it would have been good to know that it can be ok'ish. I always feel so guilty now when I say I feel fine....I just wish this disease was as controllable in everyone.

  • Mwah xx

  • Hi HH

    Just a quick question. I too am on arcoxia (90mg) and I wondered if the dose is the same for you.

    I remember another post from NMH recently wherein I'm sure something was said about the need to reduce this. Neither my consultant or gp have mentioned this and I'm thinking maybe i should be questioning it?

    I'll need to scrill through to read exactly what was written but just wondered whether you were still prescribed the standard dose too.

    Marie

  • Recently there were new guidelines issued that recommended a drop to 60mg to reduce risks. See here...

    gov.uk/drug-safety-update/e...

    Many places are now doing this and I guess eventually they'll all get round to it. Now I'm trying to sick to 60mg, but if I'm really having a bad day I'm afraid I go back to 90mg..... since I don't take it all the time now I 'Ve decided not to fret about it.

  • That's what I though I'd remembered NmHs posting.

    Mine is one tablet at 90mg so don't have the option of reducing it as such. I do know that on the occasion Ive gone to work in the morning, without taking it, I soon know all about it so definitely wouldn't wish to stop Taking it. I see rheumy soon so may have the discussion with him.

    Thanks For the quick response.

    Marie

  • Hello

    Well I'm a newbie too, but I thought I'd answer anyway 😊

    Diagnosed May 2016, after years of seeing docs (to no avail!). Awful flare up after bilateral knee operation, when my all my toenails fell off, loads of skin irritation, and high inflammatory markers. Finally diagnosed with psoriatic arthritis ( which is what I thought anyway!).

    Was given steroid shots into both shoulders, and also a depot methylprednisolone. Also given sulfasalazine. I had an appalling time on sulfasalazine. Turned out I was allergic!

    Given two more depot methylprednisolone, and put on leflunomide. Got terrible stomach pains, but this turned out to be the nsaids I'd been taking for years. I can't take them any more, which is a shame.

    Seven months on from initial diagnosis and I feel markedly better. Not perfect yet, but better. I'm still a bit stiff, but I can get out and about. I probably need an increase in meds, but since I've only been on the drug for two months it's worth waiting to see.

    I hope your journey isn't too hellish!

  • Mine does not make good reading but considering the number of years I have had it perhaps overall not so bad. So please bear in mind everybody is different.

    Diagnosed in 1985 when I was 19. Various anti-inflams and chloroquine.

    Pregnant 1988 and 1990 and again 2000 and 2002

    Drugs tried but not liked by body : MTX, sulphasalzine, aziothioprine, leflunamide

    Drugs which worked : Gold (7 years) Enbrel (7 years)

    Drugs that did not work : Humira, Rituximab, Tociluzimab

    Current drugs : Abatacept with 200mg hydroxychloroquine, ibuprofen, paracetamol, omeprazole

    Started in left knee and stayed just there for many years before progressing to right knee, hands and through to most joints from jaw to toes.

    Several arthroscopies, a bilateral release and wash outs in left knee with many steroid injections into it.

    Left knee replacement Friday 13th March 2015 (aged 48)

    Quality of life: Was very crap when Enbrel stopped working and trying to find a treatment to work 2012 - 2014 (unable to do much even bought a mobility scooter - making the evening meal for the family took all day - not working). Took abatacept a long time to kick in and then a break for replacement but now doing better. Always have to think about what and how I do things and make allowances but so much better than a few years ago. Biologics have been my lifesaver. Farm

  • I'm sorry but not prepared to divulge this information as it could be used for a market research like project.

  • Doh hope not !

  • Interesting thought tho' that with forums like this perhaps it could stimulate much more patient generated research into the different ways RA affects people and what the factors are that make a difference?

  • I agree provided that information is gained honestly. I do really hope this is not a scam post.

  • No not a scam post 😳

    I would hate to think that this info would be used by anyone other than us anxious newbies.

    I am sorry I hadn't put about me so here it is - I was diagnosed in November 2016

    Had steroid injection and started Hydroxychlorquine and then Methotrexate tablets beginning of December. I have felt absolutely awful on them (like having a hangover whilst still being tipsy) with headache, nausea, dizziness.

    Still pain (knees, shoulders, elbows, wrists hands), fatigue and swelling,

    Started on oral prednisone just before Xmas - on reducing dose got worse - increased again.

    Now on Methotrexate injections (second one tomorrow) side effects slightly better but still no RA relief

    I just want to be able to have some idea that I am on the way to being a bit better (even though I know I am very early in the treatment pathway) as it is really difficult not to live in the here and now if RA and to look to the future.

    I am so sorry if I have upset or offended anyone with the post

  • Glad you took the time to tell if your experiences !

    Yes many people do well and stay controlled with Mtx. It can take up to three months to really get things sorted but it's really good that just after a few weeks you feel improved . Have you seen the NRAS website? It's full of help and advice as is this site .

    Keep chatting and letting us know how it's going, but it does sound promising !

  • read up on predistone for withdraws been their not good when you are taken off it not tgood for bones when you are on it

  • I was diagnosed in about 2011 after a rather dramatic start (though looking back I may have had less spectacular episodes before but didn't 'join the dots'. was referred by myGP and seen promptly - started on Hydroxychloroquine because I didn't want to take MTX. Silly me. That didn't work and I got really bad tinnitus (from the Hydroxy), - started oral MTX and steroid shot - reacted to oral MTX, started subcut. No side effects from that - it must have taken a year or so during which I needed occasional steroid shots, but since then have been more or less OK.

    Good Luck!

  • Not upset or offended and sorry you've joined this club !xx

    So me diagnosed as only had a sore finger in 2012 by our very very good gp and he had a hunch did a blood test and yes positive for RA. Now in remission and just fine and dandy no side effects pain, fatigue, swelling or anything else really. I get a bit tired but do overdo it sometimes. I also have Thyroid failure some 20 years ago, PE treated by injections and RA consultant found that at first appointment he's great. Low Vit D and thats treated as well. I had extreme hair loss on Methatraxate it came out in handfuls and was told I was just one of those who are hypersensitive to it and then prescribed Leflodamide it is great. At first was horrid so painful but then the side effects went and life just sort of got back to normal. I also have issues because of the RA and have had life threatening clots in my lungs so must be treated as its vital to stay clot free. That was scary and I was lucky to be seen by the same gp and off to A&E by ambulance. Just bad luck really ! so perhaps I see the medications a bit differently and feel so strongly that side effects have to given time to go as death could be an even worse effect of RA which did have a hidden and silent impact on me. I am also Celiac so got nearly all the Auto immune conditions lol

    I'd not worry to much as it does take time but life for the vast majority is normal. I do know that those little triangular pils keep me well and I've done a lot of travelling since the return to normal. Activities that some 3 years ago I thought had gone for good as I felt bad, so bad so tired and horrid but the only real pain was in my right hand and at that only 3 fingers.

    I hope that you do know that sometimes market research companies look for this type of information, so was just being a bit careful. xxx

  • I'm fairly new but will add my experiences in anyway.

    Diagnosed April 2016. Symptoms started Dec 2015 with my joints especially feet resembling The appearance of elephant feet all swollen and red. Rest of my joints followed. Started feet then hands then elbows etc etc. Referred to Rheumatologist. Did bloods and X-rays gave me a shot of steroid. Four weeks later given result showing positive CCP of 360 alone with the others raised.

    Drugs tried, started on Methatrexate tablets which upset my tum so moved to injections. Worked well with symptoms but sadly gave me severe migraines (never had them before and they lasted three days). and lethargy. Moved then to sulfasalazine which I am still currently on and have been since 1st October 2016.

    I feel ok ish. No major swelling but have weak hands, I get really tired and have pain and throbbing in most joints. Have to say this is all early days for me and I do get down in the dumps but I know there are more meds I can try by adding to sulfasalazin. I am still coming to terms with this and it's not easy to deal with sometimes but that said this group is amazing for support, advice and generally making you feel your not alone. It's a nice family 😊

  • Welcome to the forum, im sorry you had to find us but glad you have.

    Diagnosed 2012

    Im afraid they have thrown everything at me and nothing has helped.

    Now they pretty much leave me alone as theyve run out of things to try, except Rituximub, but after being seriously ill on 2 biotherapies i declined the one is almost impossible to reverse with antihistamine or adrenalin even if in hospital. I am on high levels of opiates waiting for cannabis to be legalised. Very hopeful regarding the electric nerve blocking that is being developed though.

    Im afraid my quality of life is very poor, but i always wanted time to read, now if only i could pick up and hold a book.

    Good luck on your journey

    Blessings.

  • Leonwp .....try using a Kindle (or similar eReader) and if you can't hold that stands can be bought fairly cheaply. Just a thought so you can enjoy books again. :-)

    Love, Legs x

  • Thank you i will be close to having to look into that.

    Blessings.

  • I too am an avid reader and the first things to go were my hands. As disease is so aggressive , damage was swift and unfortunately irreversible , so holding a book is an o go for me . Have to say, initially that was one of the saddest things for me. However, I bought myself a kindle. It is so light and thin that I can comfortably hold it on one hand and read until my eyes ache! 😌😌😌

  • I can still manage with my 2 thumbs and 2 half fingers but it is hard but the level of drugs im on i forget the previous chapter before i finish the next one, i understand it all but it doesnt always stick together first time.

  • Ah, that's a bit more difficult . Have you tried having it read to you? You can turn the audio on, on the kindle ?

    I've tried this a couple of times but unless it's someone who sounds similar to Anthony Hopkins - I find it hard to hear!!

  • O i could listen to him or Richard Burton all day. I would need head phones but i could try that, thank you for the thought.

    Blessings.

  • Richard burton, yep, could easily listen to him too!

    I can't stand the earphones but you can get some very comfortable headphones now that don't irritate or hurt when you're laying down and listening?

    Wishing you all the best.

    Marie

  • Yes Marie, you are spot on with earphones they give me infections but i have wireless headphones for my late night tv that are very comfortable.

    Blessings

  • Enjoy x

  • Hi ttcc I have only be on here short time but have found ir very useful as we are all aware everyone is different I havw had ra since 2002 the doctors are aware I have a pyscological problem with medications due to fear of side effects which has not been beneficial to mw I dont just blame the doctors I alsi blame myself for refusing medications I did start off on prednisolone which has caused me insomnia osteoporosis and problems with the lining of my stomach but it is a very effective drug bur with nasty side effects and you become dependent on it I am presently wheelchair bound bur I stay positive and know that I wilk properly again as I said everyone is different look after your health do your research look at whatbothers have gone through but take your own steps good luck and be happy no matter what

  • Hi

    I've only been diagnosed for just over 3 years. Late 2013.

    Very aggressive and sudden onset and proved difficult to control.

    Got to see rheumy 6 weeks after it kicked off. Regular steroid jabs both general and into joints during that first year....just about kept me on my feet.

    We started with mtx 10 tabs a week and quickly added in leflunomide.

    And yes, the side effects were difficult but I put up with them as I was desperate to get things under some sort of control. 6 months on that combo and no better so added on Enbrel. That didn't work either and panic was setting in 😥 Was worried maybe nothing would work.

    So just over a year after diagnosis changed to abatacept......still with mtx and lefl. It took a few months to work but eventually ( a good few months) it worked, and has been working well since. Quality of life is good now and I can do most things although I never completely forget I have it......niggles from time to time. I think it's most unfair that when we do find something that works, it doesn't work forever.....I'm just hoping it keeps working for quite a few years yet.

    I think I was probably a bit worse than average at onset but we still managed to control it. I think early and aggressive treatment helped me.

  • Hi and welcome. At the moment my story so far is a positive one though I am very aware - I have two close relatives with RA- that this may not last!

    This disease hit me very dramatically in Dec 2015, just as I retired, with swollen painful knees. After Christmas this developed quickly so that by mid Jan I was virtually bed ridden with almost every joint affected. Nothing touched the pain, ice packs the only (temporary) relief. Was put on prednisolene steroid tablets by GP while waiting for rheum consultant app and these worked brilliantly. Meanwhile pre-steroid bloods had shown v high inflammation levels and rheum appointment brought forward to mid Feb. Consultant immediately diagnosed seropositive (both RA factor and CPP in blood) RA and put me on mtx and hydroxychloroquine tablets while reducing steroids very slowly. Have not been on steroids since Oct 2016. Am on 2 hydroxychloroquine pills a day plus 17.5 mg mtx weekly and folic acid 6 days a week. Despite x rays showing osteo arthritis in knees and hands, I have been very well once pills kicked in - almost immediately. Get a bit tired and achy if I do too much and found it impossible to put my mtx up to 20mg because of nausea but otherwise feeling better than I ever imagined I would a year ago.

    Very aware that coping with this horrible disease is a marathon not a sprint but so far so good. Just hope I haven't jinxed it by saying this!!

  • Hi TTCC......Afraid all that info will really confuse you!

    No two people have the same history or outcome!

    The longer you read posts here....on the same day you will see posts praising one drug & the next post will say how dreadful it is! One person will have so many affected joints...others willl have no damage at all....RA is multi faceted.......& sometimes a real downer!

    I think the only advice I would give somebody who is newly diagnosed is to approach every suggestion from your rheumatologist with the idea that it will be of help. Just because one of us had a terrible time on xxxx, does not mean you will too. If you don't trust your Rheumy....change doctors.

    I'm sorry you have become a member of our exclusive club....but it really is the "Go To" place to get your questions answered.....even if you don't like the answer you get- it will be 100% honest.

    I hope it turns out the meds you are prescribed quickly help your symptoms.......please concentrate on keeping yourself well.....don't get too enthusiastic about researching RA...concentrate on keeping yourself as fit as you can....then get on with your life as you would without RA.

    I was diagnosed 17/18 years ago & despite the ups & downs....... I'm OK! RA is a rotten disease- not a way of life.....so don't get so "in" to it - it takes over!

  • I agree that too much Dr Google may not help. And you have to avoid getting so focused that every little thing becomes RA related. Sometimes a cold is just a cold, and feeling a bit sick is just that not the start of something awful. As AC says, living well and looking after yourself physically and mentally is the best thing.

    I have become an RA nerd, but then I have always been a nerd of some sort so just swapping one set of research papers for another. But unless you are like that anyway I recommend sticking to a nice thriller!

  • I never go with Dr Google and I am actually a Research Nurse (not in rheumatology) so I am a big big nurd needing to know everything- I'm a bloomin nightmare! 😂

  • No hope for you then....you'll get the RA nerd badge any day now.

  • Should get nras to make a badge for it x

  • Hi

    I just wanted to say that your response there was one of the most balanced I've read. It is so easy to read, breath and live this disease that we can forget about the getting on with life - I agree, this energy could be so much better used in enjoying what we cannot each day.

  • Yup..nerd.....that nasty tight feeling around your chest is probably because you need a larger bra & is not the beginning of a cardiac arrest!

    I knew nothing about RA when I was diagnosed.....I have been extremely fortunate to have only had three rheumies in 18 years & all have been informative & honest...even when it was something I really did not want to hear!

    So I muddle along & rely on Mr Common Sense when I'm having some sort of wobbly! There is so much more to life than having RA as so many people on this site prove every day.

    If you're having a bad day..just ignore me....I've had the plaster off my arm, it hurts like hell & I can't ride my bike with one hand ....so I am being sensible ....which is really boring!

    AC

  • As an ex nurse I had brain tumour when I was in neurology, kidney failure in kidneys, heart problems in cardiac ........ lol NO I didn't lol I was a hypochondriac!!! Not so much now lol .

  • I was the other way...as a student nurse I walked around with a blinding headache until Sister,sent me to be " looked at" & it turned out I was walking around with encephalitis! That was the end of my nursing career....but thank goodness not the end of me!

    AC

  • Lol! I got sent by matron to check if I was pregnant as I just got married and had stomach pain but to come back for a late shift.

    Came back to a ward as a patient in an ambulance with a ruptured gall bladder , how I wanted to laugh in her face, but obviously was too scared!!

  • If we still had matrons to terrify student nurses life for patients would be much better today'

    I don't care how many degrees they give out, you can't learn how to look after sick people sitting at a desk!

    But back in the 6o's opportunities & aspirations in nursing & medicine were so different. One young GP at my practice works three afternoons a week.....after all that training.....she has no kids...says she doesn't want to burn out!!

    Yeah...Right!

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