RA

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I think a lot of new RA sufferers believe there is some miricle cure for RA and that within days of taking medications it just goes away 'cured' there is not, it can be controlled to some degree and often it takes a while to get the meds right, sometimes some meds dont work on some people and stronger ones are required but if you have RA you will always have it, even if it goes into remission, it is only dormant until something kicks it back into life. learning to live with it and manage it is the best way forward and one thing I have found with many new sufferers is that, just because they feel great today to do that job you have felt too sore to do for the past few weeks, think again before doing it because its usually a case of what you do today you will pay for and suffer with a vengence for tomorrow.

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  • Posted

    Well, not completely. My dad had RA, from the age of 31-86. He refused to take MTX etc and hydroxychloriquine, chloroquine, gold salt etc etc just didn't work. He refused to take anything but painkillers and the best anti inflammatory for him was aspirin that was 400mg and enteric coated. He walked the Pennines, he was a window cleaner, her bran his own cleaning business and he never missed a day - stopping at 72 yrs old. He thought doctors simply didn't understand RA and my mum agrees and she was with him throughout his life. She knew when he would have a flare up and when things went into remission. He didn't do it the way most people do, and he was definitely stronger than me. But it is why I have no fear about being in control of my own treatment and possible disability. So far, all I can tell is rheumatologists don't have RA and have no idea what they are doing other than handing out meds. In fact, there is plenty we can do to help the body stay well even though it has a disease.
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    • Posted

      My message was far from being directed at you, nor was it directed at all, it was directed so "a lot of new RA sufferers "  please read the first lines of my message correctly and then pass comment. I have little doubt that when your father first showed signs of RA (if thats what in fact he did have) they did not understand it as they do now nor did they know how to correctly diagnose it nor did they have the means to do so.
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  • Posted

    I am recently RA diagnosed. No one is in any doubt about the disease of RA. But the meds, although improved, simply stop the disease from developing. But my point is that it was the pain and inflammation that caused the problems and that seems pretty much the same today. And those 'old' treatments are still part of the approach now! And the new variations are just too strong for a sick body. My point is you need to get the body as healthy as possible in order to add anti cancer and anti malarial drugs onto a very sick and diseased body. And I can assure you, my dad definitely had RA!!! There was no mistake about that. In fact, he was so bad he was filmed regularly by rheumatology teams! And tried on every drug possible, until he told then no more. He did it his way and a lot can be learned from that approach instead of assuming people with power to give meds somehow magically know more that we do who have the disease!!!!!
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    • Posted

      Dammage done by RA cannot repair itself, the damage will be there untill you have surgery to correct it, god knows how many surgical procedures I have undergone, quick tally is about 14 so far. Medication controlls the inflamation and the immune system, and pain killers the pain, as long as the Meds are right this disease is managable as long as you live accordingly. Believe me you can have this disease for a lifetime and still not know about it, otherwise there would be a cure or preventative for it. I am happy with my  tried and tested meds and shall keep on using them.
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  • Posted

    there is no miracle cure for RA and people ive talk to do understand RA drugs dont work straight away they take weeks to get in your systeam im on same drug as your mum and lefluminde and sufalsalazine amd hydroxide quinn thry try and repair the damage but thry can make easier I have rods in my wrists and fused thumbs had toes straightened tendonsbbut op went wrong reverted back worst than they were my RA is very active had alot of flare my condultant said dont understand why im getting worst I agree with y totally they have no idea
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  • Posted

    I agree with you in some forms but to be honest I wouldn't say "think again before doing something".  The fact is we have RA; this doesn't mean we can't do things others can do.  Today I feel good, tomorrow I may not.  Today I may do exercise and still be ok tomorrow, next week I may do the same exercise and not be ok the day after.  In my opinion you never can tell when a flare up is going to happen.

    You are right to say learn to live with it and manage it the best way but without causing offense to you; had I seen your message when I was first diagnosed in 2013 I would have been devastated.  I can honestly say that since I've been diagnosed, I can do much more than I could 2 years ago.  It's always good to try to stay positive about RA.  No, there's not much can be done to cure it but there is a lot of medication out there to help with the pain and I do not let RA rule how I live my life.

    I'm 30 years old and I cannot speak for everyone but my experience of RA is definitely not how you described it. 

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