Hi all new to this site! but not new to RA :(

Hi all,

I have had RA now for 18 months,

I went to my GP march 2012, to see about my hands and feet & my lower back as they had been hurting me for some time, i had put it down to work and the fact i was in the TA at the time, anyway i go see him and he takes some blood tests, 1 week later i get call and he wants to see me, I go see him and it turns out my Rheumatoid Factor is significantly positive!!

My Rheumatoid Factor is 384 IU/ml

An MRI of my hands showed focal marrow oedema, and degenerative changes of the first metacaro phalangeal joint with cartilage thinning and erosion, reduction in joint space,

4 weeks ago they put me on

Methotrexate 15mg

Folic acid 5mg daily

Sulphasalazine daily

Hydroxychloroquine daily

Naproxen daily

Co-Codamol daily

My life has been turned upside down with RA, i had to stop work & TA, as i was in to much pain all the time. ,

use to work as tiler, and plaster! my hands are that bad i'm happy if i pick up a cup of tea when its made for me, hands, back, feet & legs Hurt 80% of the time. dose it get better or is this it!!

just so down and always feel like i have the flu, and the bad thing about having RA is no one under stands how you feel, and when i say i have RA to anyone they look at me funny! ( but i know what they are thinking) its ok its only RA they just don't under stand.

ok rant over!

Thanks

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17 Replies

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  • Poor you Marcus and welcome to this forum. We all understand how you feel on here. For me the only way to begin to come to terms with having this disease is to tell people what it is and explain that it's an autoimmune disease - not really "just arthritis" at all. Sometimes I find it helps to refer to it as Rheumatoid Disease - and people then think of it as rheumatism which some (a few) know to be a more systemic thing than osteoarthritis and associate with rheumatic fever. I find the more people I explain it to (only if they express some curiosity mind!) the more it helps me psychologically. If people just don't want to know then that's another matter but they probably wouldn't want to know about any illness much so best avoid these kind of people as they are usually not very sympathetic or interested in anyone else's lives. Or else they have too much to cope with themselves so best not to burden them. Rant away on here about it all whenever you need to. Tilda x

  • Hi Marcus & welcome. Sorry you are feeling so down, but this site should cheer you up a bit it helps me :-) . Hope you feel better soon & dont be a stranger to the site. Xx Alison

  • Hi Marcus sorry your feeling so down I know where your coming from with people not understanding about ra I got lots of books from hospital and gave them to family and friends so they can under stand how ra works and how I was feeling hope you get sorted soon hugs Karen

  • For many of us the drugs can really work wonders, so your life may well turn round again. I really didn't believe I could get better to start with, as could hardly walk, and it seemed to take ages for the drugs to make a difference. But eventually they did (I'm on the same mix as you) and things really looked up. Now I'm 95% back to where I was and as long as I take a bit of care and not get too tired etc etc I can do nearly everything I want. I hardly ever take painkillers now. So think positive, and in a few months you could be in a very different place.

  • Hi Marcus a very warm welcome to you. Very sorry you have the dratted ra so know how you feel. Have to say you should start to feel a bit brighter soon. It can take up to twelve weeks before the drugs start to work. If your still feeling unwell contact your rheumy team xxx

  • Hi Marcus...yep in the same boat, along with B12 deficiency, Aneamic, Gastritis (inflamed stomach lining), very low serum Ferritin, DDD (Disc degeneration Disease)...Tendonitis....thinks that's it lol....anyway, I'm also on Methtrexate, but I need Zomorph for pain, just takes the edge off.... Takes a bit for the MTX to kick in and it does make a difference, remember too there are also the Anti TNF Biologics that help too.....this insidious Disease also gives me chronic fatigue, and like you, fed up to the back teeth....we are all different to how we cope with this, and some people have it less chronically than others....like I said, takes us all differently, the more you know and learn about RA, the more likely you can accept it better, it's hard to accept, total re adaption of lifestyle....I cannot work, housework is almost a no no, causes terrible pain in spine, have had two spine ops, but h.work is dreadful, I read that some people can still work, I can't,...and others can exercise, I can't so that either due to the pain, even swimming us a nightmare for me.....so you see, we are all different......not trying to scare you, just letting you know that each of us are maybe at different levels of coping...some people have say less pain on daily basis, some have it bad..........however, this site is fab, and u will feel it help ok.....so Welcome to this fab site :)

  • You know when I read these I realise I'm not alone and when you think no one could feel everyday like I do you read somebody's who is worse than mine and it is a good wake up call. I'm on omeprazole 40 mg daily as I have damaged stomach lining, hiatus hernia and a Barrett's. This site is wonderful for me not only have you all been so kind but realise others are coping with worse than I so it makes me see how lucky I am. Although today I feel really sh..Ty!!! Maryx

  • Thank you so much, for the warm welcome.

    I hope i start to feel better soon!

  • Hi Marcus, meant to ask you, how do u cope being on Sulphasalazine? Made me quite ill, side affects were bad.....

  • Hi Marcus and welcome:-)

    It seemed to take a long time from your GP visit to get you started on meds, I've been on a similar combination. I was diagnosed in Jan 2012. Things will get better but it's also a disease full of up and downs and is very random by nature. That in itself makes it hard to cope with and all of us have felt low at some point, either at the beginning or when things flare up, it's natural............

    I hope you find this forum useful as well as helpful, you can ask anything and the experience of others is always good for providing perspective

    All the best

    Ronnie :-)

  • Hi Ronnie

    This is why It has taken along time to get meds for my RA >>>>>>

    last march I went to my GP and he did the blood tests and thats when he sent me up to the Hospital, i got there and they wanted me to X-rays and MRI, and then CT, and when i went back to them they told me something had show'ed up on the X-rays and the CT i had a shadow on my chest! so they wanted me to have CT Biopsy, so with this all going on they could not do anything for my RA as they was unsure what was up, and once i had the biopsy done i got phone call telling me i need to have PET/CT scan, i asked what for and they just said the Biopsy was no good, so i had PET/CT done and it was showing my Thymus was enlarged?

    I did not know what the Thymus was at the time, its only when i got home that i look it up, i then start to look into it and see why the Thymus would be enlarged,

    By this time its only 2/3 weeks to Xmas, i go back to Hospital and they do more MRI scans, i go see my chest consultant and i ask him whats up with it as by this time i think i knew more about the Thymus than he did, as this had been going on for some months, ( and i had done alot of home work even my GP was taken back by how much i knew about the Thymus) anyway i have thymus taken out by a top cancer surgeon at Guy's of London, 17/04/2013 , I wanted it taken out! as what it can turn into is not nice, any way surgery went well untill the surgeon comes up and tells me they could not get all the Thymus out as it had fixed itself to my heart and great vessels, (i have thymic hyperplasia of the Thymus) and he has put this down to the RA, I just hope thats what it is down to,

    so may 2013 i started meds for RA, they could not start untill i had the op for the Thymus.

    I just hope i start to feel better once this new lot of meds kick in,

    Thank you all, its nice to talk to someone that knows how i'm feeling.

    Thanks

  • Hi Marcus and welcome to the site which I am sure you will find helpful and the ppl on here are very supportive, hope you start to feel better soon. Just a thought have you had any steroids as you do not mention this, may be worth discussing this with your team as they are really helpful for some folke

    good luck crisxx

  • Hi cris, yea I had steroids when I first went, but that's all they could give me at the time as they did not know what was up with my chest,

    X

  • It's rotten isn't it? We all know just how you are feeling, we have all been there. You may not think it will get better but it does when your medication is sorted. After that there is a level of pain that you just learn to live with.....your body has been damaged, that leaves it's mark. That's the facts and I don't think there is any point in dancing around what people can expect. I wish someone had been that straight with me.

    Now for the positive side of things.....your bloods will be monotered to keep an eye on how your MTX is working for you. If it need increased or reduced. How you are feeling yourself will be very important. How your respond to them will determine the next step.

    You have to keep in mind though that there are really wonderful drugs available now to help people like us. I am now in a great biological drug called Abatacept. I have a new energy that I haven't had in a long time. My pain level has reduced too......but I still have 'old pain'that is never going to go away, I just have learned to live with it and get on with my life.

    I was with my rheumy doc yesterday and she has put me on the list to get some physio for my knees ans shoulders. She said this will really help me and will make walking and lifting my arms a lot more painless.

    I am starting to make a new social life for myself. I have two dogs that take me to the park everyday!!! I have even been able to do odd bits of charity volunteering too. It has taken my a while but I'm getting there. You too will find a way for you too. I know it can be difficult but try to keep the faith and just keep your mind going forward and know that there is help and medication that will suit you.....it's just a matter of finding the right one. There is a site on the internet that I recommend to people all the time when they find it hard to convey to other what this disease actually does to us, I hope it helps

    wow.butyoudontlooksick.co........have a look at it, I think it's very good. Show it to your family and friends too, it will help them to understand exactly what you are going through. All the best and keep in touch. Jean

  • Hello Marcus...sorry to hear you are in such a bad way. I have found with this complaint (I've had it 8/10 years that there are good days, bad days and horrible days but the people on this site are wonderful they all understand exactly how you are feeling...mentally as well..they are good people so keep asking questions and there is a laugh along the way. Mary x

  • Hi Marcus, wow you have been through so much, glad you found this site... Also Jeans reply to you is amazing, so you see, although like Tilda says you will have ups and downs, you will in time cope.....once you have the correct meds.....IF. Anything is worrying you, come and ask on here.....Tc Jill x

  • Hi all, its been some time from my last post! i did not forget about any of you, i have not had a good time from the last time i posted, my MTX has been put up! to 20mg a week, and i have also been put on Pregabalin 150mg a day,

    still on all the meds that i was first put on! if the meds dont start to work by the time i go back to see my Rheumatologist, the next step is TNFa Meds

    I have also ask if i can start having physiotherapy! as my feet/hands and back are not any better if anything i have more pain in them now!

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