Hello: Hi! I’m just getting the hang of RA - fairly new... - NRAS

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Hello

Hi! I’m just getting the hang of RA - fairly new to it and won’t deny that I refused to accept it! We now tolerate one another and are working on ways to live a better life together! ☺️

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Hi Hi, welcome

Am I right in thinking that you and your illness are the we? Lol.

Philip

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Yep! 😁

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Welcome i like the thought that your illness is the we in your partnership.xxx

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Love this approach, I'm 10 years in and I also take RA by the hand, sometimes it takes me places I don't like, but mostly I get to decide where we're going.. Being patient with the drugs helps too.

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I think the first step is accepting it and then having to be so patient. My other half has been wonderfully supportive so that has helped immensely. At the moment it is my 6 year old daughter that I’m finding most difficult. Such a lot of explaining to do as to why Mummy just can’t join in any more etc. But hey, that is the adhoc depressive stuff. It’s exciting when you find stuff you can do. Maybe not in the way you used to do it. But an adaptive way. If I get there, that’ll do ☺️

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Hi again, my mum also had RA before all the amazing drugs were available so I grew up with an amazingly patient, strong, giving mother. I couldn't have had a better role model, sounds to me like you are already doing a marvellous job, you are right, if you can't do it the way you used to, you will find another way.

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Flipping heck, I've had it 30 years and I still haven't got the hang of it.

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poemsgalore1,

You made my day. I am taking my second weekly dose of Mtx today, (my day is every Wednesday), and I am glad to know that its not just me. For once. Lol.

Some days , as I am sure you are a witness of, some days I have RA by the tail, dragging it around, and on other days, it is, (RA), is pulling me by the hair, especially since my hair is shedding/thinning. Today is a hair pulling day.

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Hello ridders2525,

Interesting really how the process goes. Yes accepting the fact that you have a chronic illness would I imagine be the first step. The second step I think varies from person to person. For me the second step was trying to understand what it it is all about, and this step for me never really stopped. The following being the treatment options and what they meant, again accepting the fact that taking the offered med route was not going to cure the disease and would bring with it new problems and risk factors. They would perhaps eventually slow the progression and help with the symptoms but there was no guarantee for this. The more steps I have taken the more I see the disease as part of me, a part that is fighting for a solution in a desperate situation. I see as my role being to do everything I can to help my body find it's way out of this dilemma. Learning to listen to your body and understanding better the reactions and what is happening gives me hope that one day I will find something that makes a difference.

I am privileged in the way that the noise in my life has quieted down, I am retired and my children are adults and I have a wonderful supportive hubby that is also retired, so I can do my research and take a break from life whenever I need it.

I wish you all the luck on your journey. xxSimba

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Thing is, I’ve dealt with Narcolepsy all my life so I guess that gives me a bit of a head start in stuff. I don’t think I have even started to scratch the surface on understanding RA. It’s horrible. It’s hateful. It’s painful. It’s restrictive. I once thought similarly of Narcolepsy too. This is far more restrictive for me and at first my whole world shattered as I just couldn’t bear the thought that just as it felt life was truly beginning, it was also over at the same time. There are a lot more emotional values to that but that’s for another time maybe. I’m finding little by little ways to do things. Equally I get knocked back by things that just aren’t going to work or happen. MTX doesn’t like me. It does make me feel a bit better, and I’m still taking it. But it makes me sick as hell. I’m fascinated by all of you that have had to deal with it for so long and read with such fondness everything you choose to share. I’ve already met some wonderful people with this that I would never had if I didn’t try and stay positive. Crappy days are really dark aren’t they!? Thank you for making me feel so welcome here. X

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That's a good attitude to have. Although I must confess i'm still in denial still after 30 years lol. Take care xxxx

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Hiya Ridders, welcome. Just love your positive attitude towards RD (Rheumatoid Disease... many non RDers get mixed up between Osteoarthritis & Rheumatoid Arthritis so increasingly we're using RD to rid us of the Arthritis tag). I have a similar view, no point trying to fight it because it's going nowhere though it does get easier once you're settled on treatment & it starts behaving. I've been diagnosed 9 years & on MTX 8 years but for 7 of them I've been injecting. Many are changed to injections if tablets are working for them but side effects become an issue, or like me increased liver values are a problem. If it's a real issue & you've been on MTX long enough to determine if side effects aren't going to abate, that it's not just your body responding to a new med do broach the subject with your Rheumy or nurse. Also, injections have greater bioavailability as delivered this way it doesn't go through the digestive system so sometimes the dose can be reduced a little, which is what I was able to do to appease my liver, also often things like nausea ease or even go completely.

You don't say how often you take folic acid. If you're taking too little this can also be a cause for increased side effects as you're not replacing the folate MTX reduces so if you take fewer than every day except MTX day, so 6 a week, again ask your Rheumy or nurse if they think an increase would be appropriate.

Pacing ourselves can help too as fatigue is a common problem with not only RD but the meds we take. Recognising our limitations helps especially when coping with everyday things & when we have periods when we feel less like death warmed up this strategy is particularly helpful as this is when we tend to overdo things & the next day pay for it. You'll find it's a balancing act but it should become easier to see the warning signs.

As explaining to your daughter is proving difficult do you think you reading about it with her would help? There is a book produced by Medikidz, they're in comic book form & written by doctors & intended to make it easier for children to understand, it's called What's up with Elouise's Mum? by Dr Kim Chilman-Blare. Anything that's concerning her that arises from reading it may be more easily answered. Also for you there's a publication by NRAS, nras.org.uk/publications/em... others too if you wish to have a look nras.org.uk/publications/all

I hope you find it helpful being here, we've lots of experience between us so there's little we don't know or haven't discussed!

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Yes, you have to learn to live and tolerate each other with an occasional fall out now and again. Do you mind me asking how old you are and how long have you had your R A ? It's a constant learning curve. The secret is to know when to exercise and when to rest. I still don't get the balance right even after 30 years !!!

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Of course! I’m 37. A virus triggered my symptoms about 15 months ago. I finally went to doc about it in July this year and was diagnosed within a week (I was a pretty helpless lump to be fair). Treatment started within 3 weeks which still left enough time for X-rays and bloods etc. oh and two huge steroid stabs in my bum! Methotrexate in the 4th week after first visit. Diagnosis was fast as I got lucky and was shoved in the vague direction of our local rheumatology special interest gp. I think I was in the right place at the right time.

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Wow. You were so lucky to get diagnosis and treatment so quickly with x-rays too !!! I hope the treatment continues to work and make life bearable. I couldn't get on with Methotrexate in tablet or injection form. I'm currently on a biologic of Ritux - an infusion every 6 months if required, depending on blood results of course.

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It was the same for me, I was fortunate that my GP had a special interest in Rheumatology, in a village surgery of one doctor, one nurse & 2 part-time receptionists in Spain. I was diagnosed a fortnight later, after putting up with a month of foot inflammation & pain. I'd not the faintest it was RD, though I did know I wanted to prove my h wrong, he said it was 'just' a bad case of gout. I started on hydroxychloroquine, that & a short course of steroids & 2 NSAIDs, as my symptoms were limited to my feet at diagnosis. If it helps I'm convinced it has helped in the long run, the only erosion I have was already there when I was diagnosed.

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