Hi my name is Tracy, im 27. I was diagnosed with RA 2 years ago. It all started with swollen knuckles, then pain in my feet and shoulders. The pain was unbearable at times, some days i couldn't even get out of bed.
My GP was treating this with a new anti inflammitory after another. 6 months down the line I was referred on to the Rheumatology dept at the hospital. At last I was being treated properly. I started on Methotrexate, I had been on this for 2 weeks when my blood tests came back it wasnt good news, it had been affecting my liver. I had to stop immediately and I was at a real low point. I thought this was going to take all the pain away. I had a few steriod injections along the way which were great.I am now on sulfasalazine and have been in remission for the last 10 months or so.
I work in insurance and my employers have been fantastic. Appointments and days off have not been an issue. My hospital had been running a case study which I signed up for. They were testing ultrasound and the importance of aggressive treatment early on. I attended the hospital once a month for 18 months. Its now every 3/4 months I go.
What concerns me is being on this medication for the rest of my life? is that going to be the case? I wonder has anyone tried any other methods of treatment? I am feeling good and dont necessarily want to start messing with that at the moment. Don't think I could go back to that.
I'd be grateful for any advice anyone has to offer!!
thanks
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TYavas85
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Hi Tracy welcome to the site! I'll watch replies to this with interest because I share your concerns entirely. I'm on MTX and Hydroxichloraquine - both at quite low doses just now - and on the whole I feel pretty normal although I do have other stuff going on that I think is mainly menopausal. I am sufficiently well most of the time to wonder what would happen if I stopped taking these medicines but am too scared to risk it - and would feel a bit of a fool if I did stop taking them against my rheumy's and GP's advice and then it all kicked off again. Both drugs took quite a while to work for me.
Neither drug is making me ill at present although I've had bad stages when the doses were higher so I am hoping that one day I can come down or off them entirely. My rheumy said that RA is for life and I know this but a few people have come on here and said this has happened to them and they've remained in remission so I like to think it's possible. Tilda xx
Just out of interest, MTX, hydroxychloroquine or Sulfasalazine are not what a lot of other countries would call "aggressive treatment". DMARDS definitely are the first things to try, but there are a whole load more newer treatments that can work incredibly well, including the anti-tnf drugs (given by injection). It does seem that UK doctors really hold off using anti-tnfs, probably mostly because of the cost of them to the NHS (around £8000 a year), but if other things aren't working for you, then you should ask your rheumatologist some very direct questions about whether you meet the criteria for trying them.
Im not sure what other dosages people are on, or what people start off with. I dont know anyone else with RA. I started on 4 sulfasalazine a day, they increased it to 5 but this was causing headches etc so now on 4 a day. I dont think my doc will be open to other ideas as im pretty stable at the moment. I actually want to come off them altogether and hopefully find a way of managing it without the need for these DMARDS. Thanks for the reply I will read up a bit more on anti tnf drugs.
Hello there, i am on 6 Sulfasalazine a day, plus Tramasets, and patches. (butrams ) i had to have both my wrists injected on Tuesday as i could'nt stand the pain i have been in for a few weeks, i was told i had RA when i was 30 im now 58 and it has got a lot worse in the last few years............
DMARDs may not be as effective as anti-tnfs for many but they are aggressive in the sense that they are powerful drugs and we have to be monitored closely when on them. They are also aggressive if we think that we may have to be on them for the rest of our lives and because they can be dangerous. Tilda
Yeah thats my concern exactly, I initially started of having blood tests every 2 weeks, then down to once a month and now every 3/4 when i attend my hospital appointment. The nurse at my GP constantly comments on how toxic they are( not sure she should be doing that as it is adding to my worries) I do have the odd day I feel slightly stiff but have never been back to what I was before. I really do hope one day I can decrease at a very minumum. My hope is to come off them completely but for now I will stay on them. Thanks for your relply. I'm new to this site and finding it very helpful xx
ive been trying some normal stuf glucosamine and chondroitine on ebay pay about 16 quid for the best stuff its by viridian on the label this is the best one
then i take vit d tablets and fish oil tablet crondotine is good for the joints but dont by the cheap stuff this will last about 2 months.
this got me walking again on me feet albit its still painful under the knees.
do try some of the natural remadies see if that helps any it will take a bit to get inside your system.
then do a bit of reserch on the net for other vits.
usually the b complexex are short in rumi people so see if it says it on more than one site.
sometimes im told natural remidies can help
and i also take apple cider vinigar to clear out my inflamed system dosnt tast nice but one lage teaspon in a 3.4 cup of hot water you can put a bit of honey in their to to sweaten it.
anything is worth trying instead of beating up your system with toxins
well thats what i think maybe some people will disagree with me on here
but ive not been diagnosed yet so thaTS WHAT I DO i only have parasetomol and these sort of nerve tablets for it at the moment.
Thanks John, I know there is risks with stopping the medication. but like you i just think there is got to be another way. I wasnt diagnosed until my 2nd or 3rd hospital appointment as RA wasnt showing in my blood but the consultant was sure my symptoms were RA. Natural Remedies are for sure what I would rather be taking.
I have had RA since my teens and in my early twenties I tried a diet specifically for RA which was out of a book by a lady called Margaret Hill, it was called curing arthritis the drug free way and was written by a lady who had RA . It involved drinking cider vinegar in hot water and avoiding certain foo types. For a long time I was very well on this but when my RA got significantly worse I returned to the drugs. I will try t hunt out the book to make sure the name is correct for you if you are interested. Also about 8 years ago I went to live in Spain for a year as my RA was really bad and I was not coping well. The first six months were hell with flare ups but then I was remarkable well and could actually jog for the first time in my many years. I was so well and can only put it down to the climate and fresh food diet as I had no frozen food everything I ate was fresh and natural. Unfortunately I came home as I missed my family too much and within six months all of my symptoms had returned but for that year I was the best I had been. I am trying now to follow a strict diet to eliminate foods from the deadly nightshade family and I do think this is working but am taking a lot of drugs too. Hope this helps. Donna
Thanks Donna, I will have a look for that book, I had been spending a lot of time in Turkey around the time I was diagnosed and I did feel the warmer climates a real relief not to mention swimming in the sea everyday.
I can't imagine what it must be like to be diagnosed so young! I'm in my 50's and the thought of having to take drugs for the rest of my life is unpleasant enough so really sympathise with how you're feeling. Everything I've read and heard suggests that depending on how aggressive an RA you have, it could be possible to have periods of drug free remission that last for a good while if not years. I'm trying not to think too much about it, as my first goal is a drug controlled remission, but it's in the back of my mind. But recently I had to drop one dose of MTX because of side effects and I'm really pleased that it doesn't seem to have sparked off a flare so means I can still hope. And if you've found that your RA can be controlled just with Sulpha I think that's a good sign that your RA is relatively well behaved. But 10 months is not very long to be in remission for, so may be a bit soon to consider change. What does your rheumy say? Mine tells me that it could be possible.
And I really do believe that good diet and exercise are important parts of the treatment so you're in as good a condition as you can be. Personally I don't go for supplements as think they're an expensive way to get stuff that you can get as well from eating properly, but everyone's different so maybe they work for some.
Don't give up the hope that you'll be able to do without the drugs one day.
Hi Polly, I guess as im still relatively early on in my treatment their advice is to stay with the drugs which i understand, i know i cant risk damaging my joints now as it wont be good for me in the future. as for herbal remedies they are not for that at all. Im content at the moment as im pain free and no swelling its the long term im thinking of. I need to start exercise again im a little scared of it at the moment as I have on a few occassions done too much and ended up paying for it the next day. thanks for the reply, I hope it will be possible in the future xx
I am lucky in that I'm only on mtx and a tnf called Humira. I wouldn't recommend stopping the drugs. It's not just the pain you have to think about with this disease its the damage its doing to your joints. The drugs are to control this rather than the pain. My mother also has it and she was diagnosed before all these modern drugs and was just on anti inflammatory tablets for about 3 years before her GP refered her to hospital and the damage to her joints was irreparable. Both her knees and hips had to be replaced. Omega 3 fish oils can help. I take capsules of those. Like all things they take a while to kick in. Glucosamine has been proved not useful for RA just osteoarthritis. I used to take that before the studies proved that but felt worse on it anyway. Its all personal choice but please be very careful about decisions regarding treatment.
Hi Tracy! I can fully sympathise with you. I was 21 when I was diagnosed and am now 33. My RA is very aggresive and I have had some very bad spells but also several years of remission when I was put on Enbrel. This was my wonder drug and really worked for me. I have had to come off this medication as I want to concevie (you have to be off it for 3 months before trying) and my RA has come back with a vengeance. I'm on a high does of steroids at the moment to get me through this bad spell. It's tough but I'm determined not to let this horrible illness stop my dreams and my life. I
I feel the same as you and hate pumping these drugs into my body but have realised that I can't cope without them. I am on a very healthy diet and try to reduce the amount of acid forming foods I eat as this is know to aggrevate the RA. I also beleive that for me white wine is a trigger. I noticed a pattern after having a glass of wine one evening my joints were really bad the next day, this happened on a separate occassion too so I will be avoiding like the plague!!!
Exercise is really important and I've always been very active even with the RA. I definitely believe it has helped my body to cope better. It is important to keep your muscles and bones strong. Even during a flare light exercise is recommended.
Have you tried accupuncture? I have tried it a few times and it didn't work for me personally but I know have several people who it has helped. It is quite expensive but for me money doesn't matter when it comes to my health.
I hope this has been of some help and I hope the RA stays in remission for you. I'm also new to this site and am finding it a big help knowing that I'm not on my own and that this illness has an impact on your life but you can't let it get the better of you.
Sorry about all of the spelling mistakes, I'm typing very fast
Hey, I havent tried acupuncture, I have been quite lucky in that the sulfasalazine has helped me, my doc expected i would need something alongside it. I have read that sulphasalzine can be used alongside pregnancy but will need to speak to my doc about that one.
You are so right you cant let it get the better of you, it was hard to take at the start but you just need to get on with it. alcohol for me is a trigger i do feel it the next day if ive been drinking.
It has helped a lot hearing others opinions and how they cope with it. thanks for the reply and good lick
Hi again - I just wanted to say that my GP put me straight onto Sulphasalazine when my RF came back positive and my inflammatory markers high as I was in pain and he knew I'd have a long wait until diagnosis. I had to come off it after 3 weeks because I had a very bad reaction to it so then I asked him about MTX. He said that he would only feel ok about prescribing Sulpha prior to my seeing a rheumy because it was the least dangerous and toxic DMARD and had been around the longest apart from Gold. I hope this helps. If its working for you then I really would think hard about coming off it.
Sulpha is not as powerful as other DMARDs such as Leflunomide or MTX and it's good if you are in remission on this drug alone. I have just learned my ESR is once again a bit high at 54 so although I don't have much pain I do know there must be something inflammatory going on still in me for these consistently high markers and that scares me more than the worries I have about taking these drugs! Tilda x
Ps I should add that I take hardly any pain medicines at all ever now and keep on top of my RA by exercising rigorously daily and eating extremely well with as many anti inflammatory foods as possible e.g oily fish, lots of berries and bananas and keeping my weight down. I feel it compensates for the potentially toxic drugs to a large extent and I don't drink alcholol at all. TTx
Pps don't be put off daily exercise just because you pay for it! If you want to come off Sulpha in the long run then you do need to build up good, strong muscles to protect your joints. There's no gain without some pain but my physio assures me that this is good pain as opposed to destructive RA pain. For me exercise has made more difference than even the drugs I take.
My rheumatologist has always said light exercise is good but nothing to high impact on the joints. I do make sure my diet is gd and taking in all the vitamins I need through food I did at one point have to take supplements the sulph was causing my b12 to be extremely low. Just need to get the balance right. Thanks for taking the time to reply I'm grateful x
I've had joint problems since I was 16, I'm now 42, where I used to live in Dartford they couldn't find anything wrong even though I was in a lot of pain, I had biopsys, blood tests and xrays, all to no avail so my doc put me on sulfazalazine which did nothing, 13 years ago we moved to Surrey and the health service has been brilliant. I went to the doc and he straight away referred me to a rheumatologist who diagnosed RA, he removed 4 syringes of fluid from each knee and gave me a sterroid injection, I remember walking out of that hospital feeling like I'd got new knees, he has been brilliant. He put me on MTX which helped a lot, since then I've been on infliximab which worked for a while, enbrel which was working very well, both still being on MTX, I then had a reaction to the MTX after 10 years of being on it and couldn't tolerate it anymore as it was making feel ill all the time so he took me off enbrel and put me on tocilizumab, as you don't need MTX with that. Well I'm afraid that hasn't worked at all and I'm very painful again so have asked him to put me back on enbrel with a very low dose of MTX and maybe that may work. He's now said that because the joints are damaged, after years of no help, then no amount of pills and potions are going to repair them so I'm now looking at replacements, so I would sincerely advise Tracey not to change anything if she is doing so well, she will regret it - I also spend £40 a month on herbal remedies to try and help the pain so herbal isn't always the answer, they help but not on their own you have to combine herbal and conventional.
Hi, Did your consultant not mention Enbrel with Leflumonide as that's the combination that I am on. It's helped me. Ok mine is PsA and not RA but it was pretty rampant everywhere before going to this treatment.
no I've never been told about Leflumonide, never even heard of it. In response to the other posts, I usually go to the gym 3 times a week and work out an hour at a time, haven't been going for the last two weeks as I'm so sore! also as far as weight is concerned, I am a little over weight and at one point went on the cambridge diet and lost two stone kept it off until I had to have a hysterectomy and after put it on again! but I must say when I was two stone lighter I didn't really notice my knees and hips being any better than normal, I just think that my rheumatologist is right and the joints are shot, he showed me the xrays and they do look pretty bad.
It's just a shame all health services are not the same. I am so grateful that it's been caught relatively early on and I have something that's helping. I'm just curious to find out if there is ways of not using that type of medication. I wouldn't make a decision if it was seriously going to affect my future quality of life. Thanks for your reply I wish you all the best to
Hi, just to let you know, i have been told the same, i am 32 and have had RA since i was 10. Enbrel ( amazing drug) only came along 10yes ago and although it has helped me no end, all the years of high inflamation and uncontraolable RA has left me joints damaged! so far i have had bilateral hip and knee replacements, 2 fused feet, a fused wrist and a straightned ankle! If i'm honest my metal bits are the best bits of me lol!
Also just to let you know, i can't tolerate MXT so have never taken it with Enbrel and so far my Enbrel is working perfectly. It may be worth thinking about?
here is my story of untreated RA for almost 50 years. i was diagnosed at 51 & i am now almost 2yrs down the line of very severe condition.
when i was a mere toddler i can clearly remember also having raynaults syndrome and being made to wear mitts rather than gloves with fingers. i hated them as mitts were for babies.
when i was at this stage there were multiple episodes of swollen sore ankles and wrists and i used to sit with them on radiators to ease the pain. i was otherwise very fit healthy & active child, but after activity both my knees used to swell at times and i could hardly walk. i just did though and i can remeber doctors visits but i never got anything to take and didnt have any hospital appointments or drugs.
as i reached my teens and become even more active in sport i had more of these "injuries" and it was put down to me being clumsy and i was told to stop making a fuss. you dont anser back when you are a kid so i just suffered the pain, put up with the swelling until it went away and just carried on with my life.
i became a sea swimmer and would think nothing of swimming for 3 to 4 hours, rock climbing hillwalking and cross country running as well as the more dainty yoga. every few weeks i would have a flare which lasted from days to weeks but i kept going thinkging that i just had dodgy joints.
when i had my first child at 20 both my wrists went into a massive flare and i got a couple of beige splints and told to do nothing with my hands - yea ok i got a baby and nobody except a rather clumsy husband to help.
the flares got more frequent in my 30s, like every month or so for weeks on end and obviously did go to doctors but still got fobbed off and sometimes even ridiculed.
in my 40s an old neck injury started to play up and after much investigation was told i had cracked cervical vertibrae and these had ostephyte growths (bone spurs) which caused me terrible horrendous pain and disability.
i continued to be as physically active as i could be but no matter what excercise i id there was always big time payback for my neck shoulders and arms. i at this stage started to take ibuprofen most days. i got prescribed other pain relief and they tried to fob me off withy amyltriptiline but this was useless
all through these years i had ultra high white blood cell count showing infection/inflamation but now when i ask about this, there is no record of me saying i was ill. no dumb fools but i did present with seriously swollen limbs and soul destroyying pain!!!!
anyhow it got so bad in my wrists that i rang 999 as i thought i was having a heart attack butt to cut a long story short i got a diagnosis of undiagnosed RA.
ive had sulfasalazine and i thought i was going to die from the bursting headache i had from day 1 of taking them. after 3 weeks snivelling and sick in my bed i stopped taking them, even though they were working on the swelling.
the RA has had bad effects on my blood and irritated the outer membrane of my lungs and due to a non RA badly healed broken rib sitting on my lung i am not prepared to take methotrexate. this is my own choice.
at the point of writing i have had many months of bad disabiolity and lots of days of feeling awfully sick and ill. (if you had blood like mine you would prob feel sick too)
however, at the end of this story i can say that i went multiple times into remission for at least a few months at a time and i have virtually no real joint damage. a couple of twisted finger joints thats all.
i am not in a well state at the moment and am considering taking more toxic treatment but i did perfectly well exist through all those decades of pain. i did have an exceptionally healthy diet and i have never been more than a few poundss lighter or heavier than i was at age 12. i do smoke and they say that could be a trigger. its certainly toxic and i wish i didnt smoke!
i personally think that its wrong of the medical profession to persuade people to take toxic drugs so rapidly. i do agree with the early intervention theory but in my case it was a bit too late. i think that there is any chance that any other person had this disease undx for a very long time, that other options could be tried first. losing weight i know for some people makes a massive difference to the joints. im friendly with a same height person except that rather than my regular 9stones she was 11.7 stones and had a big big struggle with her knee joints. she is a very fierly lady and nobody had the courage to tell her she was fat and that getting rid of the weight might help. however she got herself down to 10 stones and has remained at the same weight for a year and has had zero problems ith her knees.
please dont take this story of mine as a reason not to take toxic meds. the doctors do not know who will get serious joint damage and who wont and the drugs are to prevent this. i just think that there are other ways to restore and maintain good joints and live with the disease rather than be controlled by it. i am not in a good state of health now, but this is down to the stress of having an undiagnosed condition for so long and struggling to make anyone actually believe i had anything wrong. i was very much neglected by the health carers but nothing i can do about this now. its not their fault i was born with the gene that gave me RA after all lol
Not their fault but very frustrating its gone undiagnosed for so long. I do hope there will be some relief in the end. Thanks for replying I just can't stop thinking the meds just can't be good. As I have found in the past you take medication for one thing and it affects something else so you end up on another to make up for it.
Hi TYavas85
As many others have mentioned treatment with the disease modifying drugs is the only scientifically proven way to slow down the progression of RA and hopefully prevent damage to the joints. Certainly having a healthy diet, taking regular exercise and sometimes complementary or alternative therapies can be helpful too, but these would tend to be used in combination with the standard drug treatment. Your rheumatologist will be aiming for remission and it's fantastic that you've reached it, but as others have mentioned this is usually a drug-induced remission. We've got lots of information about all the things discussed on our website so I have included some links below to our pages on diet, exercise, and the Arthritis Research UK information on complementary therapies for RA which I hope you will find useful.
Hi Tracey I have had RA since I was 18 years old and I am now coming up 54. I have taken so many drugs over the years e.g penicillamine, gold injections, steroid injections in fingers, knees and elbows . Leflunamide, MTX and many more of which some have been taken off the market years ago. What you have to think, is years ago when my grandmother had RA and was bed ridden, because in those days they only had asparin! and the deformities were terrible. Nowadays they do the right thing and treat RA early to stop the deformities. I wasn't given drugs for a few years and I have probably more deformities because of this. RA doesn't just affect the joints , it can affect the lungs , the heart and even eyes so by taking drugs we are lowering the immune system so we dont have the damage and if that means we have a few side affects on the way it is a whole lot better than having joints and internal organs damaged. Apparently we have an over active immune system and we have to take drugs to lower this over active immune system so the body doesn't attack itself. so if we come off the drugs our immune system becomes over active again and then the flare ups start again and so does the damage.
Hi, what a lot of replies you have had, obviously a subject that winds us all up!
I share your frustration on taking these drugs a lot of which can have nasty side effects- HOWEVER- uncontrolled RA can also have nasty side effects which include permanent joint damage. You are still young and need your hands to do lot more for you yet,take a look at alot of the websites that show pictures of what RA will do to your joints and im sure that it is a case of 'will' not 'may', what none of us know is when or how long as we all have various degrees of speed of this condition.
So the way I see it is if i dont take the drugs i WILL get permanent joint damage and know that i WILL be in constant pain, constant lethargy and quite frankly life was not worth living OR i take the drugs and MAY have side effects but if i attend for my regular blood tests as recommended any problems can be noticed quickly and drugs can be stopped as was your case with the methotrexate.
Learn to read your blood tests - they will show whether your inflamation is down which is what we are aiming for and if you can see the decline follows the time of being on the drugs then they are working for you.
On positive days I consider myself lucky that research has been done and drug trials have taken place to give me a better chance of keeping my naughty immune system under control so that it cant cause too much damage but that dosent mean to say on low days i still
have tantrums when its time to take my drug cocktails.
So do think of your future, not just today, all the best,x
I made the decision at 1:30 a.m. after a week-long war with pain that I've had it with most of the RA meds out there. I've worked my way from Prednisione, Hyrocloriquine, Methrotrexate, Humira, Embrel and now Cimzia. The Humira and Embrel I had instantaneous reactions. Did the load up on Cimzia and then when I had my first regular monthly shot, my body went into excrutiating pain, nightmares, depression, extreme fatigue, muscle fatigue where you feel like you're carrying cinderblocks on your legs and arms. Oh, it did help the first four days of load-up. Prednisone is the only medication that has helped with the pain and inflamation. Of course I've gained 50 pounds in the past 10 years going on and off Prednisione. I've just had it with all of these killer meds that di more harm than good to my body.So, I decided that I'm going to try natural remedies such as fennel, cinnamon, and alfalfa and see if maybe this will work on me. I'm hibernating today, just can't make it to work today. Sorry to sound so negative, it's just one of those days. My family, friends, and employers are tired of hearing me say that I'm having a bad day, or I'm in pain. All they see is a fat, lazy woman. They just don't get it. They have absolutely cannnot imagine what RA does to the body. I just say imagine being the worse pain you've ever experienced and you have it 24 hours a day for the rest of your life.
Nchavez and others I see this thread is 3 years old. I'm really interested to know what became of all of you who stopped taking RA meds, either because they didn't work and the price was too high, or because, like me, you were too allergic to them but didn't meet the criteria for the biological drugs or couldn't tolerate any of them either.
I know of two male GPs (one retired) who both refuse to take DMARDs for their RA because they know too much about the drugs and risks. One has suffered a lot of damage from RA over a lifetime so this decision interests me a lot.
I am presently only taking a low dose of Prednisolone and weaning off this slowly too. I've failed to tolerate four DMARDs to date - 3 with full scale allergic reactions.
My diagnosis of RA is far from clear cut but my rheumatologist is sticking to his original diagnosis for now, while supposedly keeping an eye on where it goes. So far it is going into my nervous system mostly and I've also had a catalogue of infections and my autonomic nervous system is increasingly dysfunctional - so I have stroke-like episodes and sweats and bolt of lightening pain in my hands and legs and pins and needles, thermostatic changes (sub Raynauds). A diagnosis of Lupus would make a lot more sense to me but so far my rheumy is sticking with his one of non erosive RA.
I took myself off of mtx and hydroxyl about a year ago and visited a nutritionist who put me on a course of supplements and advised me to eat certain foods and cut out others. I had been off the meds for 9 months, when I had a flare ( I have problems with hot weather), so am now back onto a lower dose of mtx by injection and hydroxy
I shall be reviewed near the end of the year, with maybe, the possibility of lowering dosage even more. We are all different though and if anyone is considering coming off meds, they need advice from the experts and not take my gung ho approach perhaps.
Having said that, when I confessed to my consultant that I had gone my own way ( mainly as mtx tablets made me feel bad) he was very supportive and is listening to my wishes for the future. Best wishes to you
I haven been on mtx for 9 years. I weaned off in January of this year , my last injection in March. I am supplementing with boron, magnesium, vit k2, vit d3. I had a very bad knee once off the mtx and my fingers are bad when I work them hard like stacking firewood. But I can say my knee is getting better and my hands are more nimble. Yes, they still hurt. But then they did on mtx too. I am a 83 year old female and I have read that improvement takes longer than in younger folks. All my supplements are what one's body needs and so they won't hurt. I hope this helps.
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