Confused and don't know what to do.

Hi, I have just been diagnosed with ra. I really don't know if it's because I am in denial, or not, but I am feeling so much better now than I was 3 months ago when I was in a lot of pain all over. I couldn't use the keyboard to type for more than a short time, but now I can. The pain has subsided and I am sleeping better. I do feel unwell, but not ill. I was also diagnosed with osteo arhtrits at the same time. I couldn't start on mtx and hydroxychloroquine straight away as I had a throat infection. I don't know how to tell which is causing the pain.

I don't want to start on a drug regime the way I am feeling now.

Would it be detrimental to my health if I decide not to take the drugs until I feel I need them?

I work in a pharmacy and I am in contact with sick people all the time.

I feel so confused about it all.

Thanks for listening.

Skip

Featured Content

What’s your health story?

We're sharing inspiring health stories of some of our members

Watch John's story

Featured by HealthUnlocked

18 Replies

oldestnewest
  • Hi there,

    One of the difficult things about this disease is that it does come and go. Even for those of us who do take the meds there are sometimes real moments of doubt. Times when I feel well and in no pain I start questioning whether I really had RA, for example. But deep down I know it's still there and I know I will end up disabled if I don't take the drugs.

    It is an individual choice and no-one can make you take the drugs if you don't want to, but do think carefully about it. And once you're joints are damaged it's too late . The other thing to think about is that this isn't an illness, but a disease. So you can go through long periods where you don't feel ill. Apart from the pain I feel fine and even when the RA is flaring I'm not ill - just suffering from a disease.

    So if you're confident about the diagnosis (ie it was based on v clear results) then think hard. Most of the drugs take 3 months to work, and if you flare it can take longer to get back under control. And all the research shows that if you're are very aggressive with RA to start with then there's a better chance of getting a medically controlled remision. Good luck - a tough decision, Polly

  • hi ..

    Polly said exactly how it is ... and it is what it is .. Once damage occurs theres no going back ..

    For example ....

    Where i worked there was a gentleman that was diagnosed with RA ... so the rhuemy decided he should go on MTX ... when he read the side affects he decided not to take them because he thought it was adding illnesses to what he already had ....

    4 years down the line he has terrible disfigured hands and he spoke to his gp and his gp said even if you read painkillers side effects you wouldnt take them and its written on there as a possibility

    in the end the gentleman decided to try them within a couple of weeks he felt like a new man he was in the garden cutting the grass and pottering about doing a bit of DIY

    And he said now he wished he had taken them when they offered ...

    when they decided to give them to me i spoke to him and he said take them ..

    So please do think about the long term

    debs xx

  • Yes Debs and Polly are quite right. I'm slightly reluctant to credit the MTX, which is all I'm on - but my mobitily has returned hugely since I've been on it. It's still not a 100% and I do believe it is giving me severe mood changes for a few days each week after taking it but I know lots of people on here don't get these so I it's just the way I personally react to some of the stronger drugs because I'm the same with steroids and with the Sulphasalazine when I took that last year.

    The good thing is that you are being offered MTX and Hydoxy combined because the new thinking, that too few rheumys are applying, is that combined therapies are the best way of treating early RA.

    It does feel like they are taking a sledge hammer to break a nut doesn't it? - especially when the symptoms die away for a while - and it's very hard not to be in denial about a disease like this as I'm finding too. But at the end of the day all I have to do is google RA and look at the images of claw hands with ulnar drift and find I can stick with the MTX despite the mood swings. It sounds as if you have a good rheumy advising you to take a sensible mix of dmards and that's got to be a good thing to consider when you're weighing it all up. TT

  • Thank you so much for your replies. I am listening to what you are saying.

    This all started overnight after I had driven a long distance on the previous 2 days. I went to bed and all the pain started, with cramps and restless legs thrown in.

    I was sure it was a virus, I didn't feel fluey, just out of sorts, but the pain was horrible, so I couldn't sleep.

    After a couple of weeks of it I started to worry.

    Then some bony things started to appear on the joints nearest the tips of my fingers.

    I went to the doc and had bloods which were clear of ra factor, but she still wanted me to see a rheumatologist.

    I was convinced by the blood tests that I was ok, but the doc still wanted me to go.

    My other symptoms are tiredness...put it down to lack of sleep.

    I took magnesium and had epsom salt baths and the cramps subsided.

    The restless legs got a bit better and I only have that occasionally.

    I was struggling in work because I kept dropping things.

    Any physical activity like cleaning a cupboard out or stretching up for a short period ended up with muscle pain in my arms and legs as though I had been weight training and sprained everything.

    My wrist and shoulder joints feel loose, as though they are not being held in place very well, and my joints are all clicking like mad.

    The thing is, when pain subsides you forget about how it was.

    I had a long think back last night and it's only a few weeks ago that I was crying because everything I did caused pain somewhere, I was crying through frustration with a bit of fear thrown in for good measure.

    As it stands today, I feel sore in my arm and shoulder muscles, my toes and balls of feet are aching, and my hands.

    I drove for about an hour and a half yesterday, and I can feel it.

    Hoovering is difficult, as is squeezing and opening things.

    My concern is that as my bloods tested clear, can all these symptoms be the oa?

    I have read that rheumatoid can trigger osteo, which I didn't have before all this, so that is making me think that I did have an attack as it has come on so suddenly.

    It's the clear blood test that is making my doubt all this, and the fact that I can't be sure which is causing the pain.

    As you can tell from my rambling, my head is all over the place at the moment.

    It has only been a week since I was diagnosed, so I suppose it's early days.

    I haven't had the x ray results yet.

    Do you think that they will be able to see the difference between ra and osteo damage?

    I was 54 in January, and all this started the day after my birthday...wasn't the sort of gift I was hoping for lol!

    Nic

  • Hi again Nic - what you describe could be my story too. The only difference is that my RFactor was a low positive which helped get me referred - but rheumy dismissed that first time as being neither here nor there and I only got my diagnosis on a second visit in November.

    I think the statistics are that 25 % of people with RA are sero-negative. In theory those of us with low blood indicators or who are completely sero negative should have a better outlook because it can be seen as the disease being less aggressive. In reality many people on here and on the Arthritis Care forum seem to have had just as aggressive RA as others who are factor and anti-ccp (the other more coherent blood test for RA) positive. I am Factor positive but anti-ccp negative which apparantly makes me sero-negative. So I know exactly what you mean about feeling uncertain as it makes denial much more likely if there aren't blood tests clearly saying that you have this disease.

    Have you had your inflammatory markers taken (ESR and CRP) and have you been given ultrasound scans to see if there is inflammation in your joints? I'm sure you have and your doctors are probably going by the results to diagnose RA as opposed to OA which doesn't come with raised inflammatatory markers. I believe the pain is also quite different too and certainly the bits of OA I have so far in my finger tips tell me that this is right. And of course OA is not an autoimmune disease and therefore it doesn't make you feel fluey or give you fatigue in the same way as RA does because OA is not systemic. Like you I have newly formed bony lumps on all my finger tips and was told by consultant and GP that these are OA but as they have sprung up at same time as all the other aches and pains accross my joints I now believe they have been brought on by the RA - or whatever type of inflammatory arthritis I have.

    My rheumy said that the name we give the disease is not that important - it's how we treat it that matters most. I think these autoimmune forms of arthritis can change and I know that most people with Psoriatic Arthritis - which is very close to RA in lots of ways - are sero-negative with little showing in the blood. I also have met people on the various forums who have PA and AS and Lupus (some with all three plus RA) who's disease is every bit as severe as those with positive blood factor and positive anti-ccp results so there are no clear cut diagnostic results for many of us with these types of inflammatory arthritis - but the destruction of joints is still taking place - even when there is only very low level pain to be felt sometimes.

    There is an awful lot to come to terms with I know and the only people who I have found can understand the shock, trauma and the pain of diagnosis and of symptoms are the people on here. Take care and just keep reading and learning is all you can do. TTx

  • That's the strange thing. I rang the doc for my result and the receptionist said all was normal. So, I assume the esr and crp was ok too.

    I had x rays on my chest, feet and hands last week, but not ultrasound.

    I was told it's about 2 weeks to get the results.

    Nic x

  • Hi, I'm not quite clear who has diagnosed you as it sounds as if you haven't seem the rheumatologist yet - but if you've been prescribed MTX then you must have? Rhemy's usually do slightly more detailed blood tests than GPs (most GPs don't do a CRP straight off), and are better able to distinguish the physical symptoms, so you do need to see one to be really sure. But everything you say does sound like RA (sorry) even down to the inconclusive blood tests. One of the most frustrating things about it is that everyone reacts a bit differently.

    And yes, there are differences in the x-rays between the type of damage caused by osteoarthritis and early RA. Chances are that you don't have any actual RA joint damage yet, so don't worry too much. Normally you will be x-rayed just to have a record of how you are at the moment, as it's important to have that so can check no changes later on, and because they'll keep an eye on your lungs.

    But the tiredness is awful enough, as it can just appear like a wave and squash you. So you do need to learn how to manage it, and make sure you do sleep properly. It's a horrible learning curve, so so sorry, but do ask questions as it really helps to understand what this *#-@£ thing is. Polly

  • I was diagnosed by the rheumy. The nurses told me that she is spot on with her diagnosis when they were taking blood after I had seen her. She spent a long time examining me and asking questions, then it was " Right, you have it and we need to treat it asap".

    So, she was going on her examination, questions and the blood results from my doc.

    Nic x

  • Ask for your numbersfrom your test. once you begin to understand this disease,you willwant to keep track ofthing yourself.

  • Good afternoon, hope you are all enjoying this glorious weather. If not, and it is raining where you live, sorry - but it is wonderful here! For what it is worth, when I was diagnosed the only blood marker was a raised blood plasma viscosity of about 1.87 (should be below 1.72 I think) and I had random pain, stiffness etc etc. I am sero-negative too. When I feel OK I do wonder if I have been going loony and it is only when most of my joints just generally hurt that I accept the RA diagnosis. Pre-diagnosis and treatment I once said to my Mother that all my joints hurt and I was nearly at the point where I felt I would not be able to cope any more. Coming on to this site and reading other people's pathway to diagnosis (ie: where the blood results are not constantly screaming a 'problem' has been so reassuring). Let's face it, why on earth would we take such potent drugs with the power to make us feel sick, etc, if we were not at a point where we HAVE to do something. By the way, MTX aside, I am enjoying a lovely glass of white wine (actually, my second!) - it is Sunday, the sun is shining and I don't hurt.). Oooh yes, had 4 brilliant days last week, yesterday felt appalling and today feel better than yesterday but not as good as last week. That is the way it goes. I now go with how my body tells me, rather than what my diary tells me I should be doing - much easier! Don't forget, that as RA consultants are so busy, they would not make a diagnosis and therefore add to their workload, if they did not feel it appropriate. XX Virge

  • I am so glad I found this forum, your answers are really helping me understand the complexities of all this.

    You are all spot on in what you say..of course you are, you are talking from experience.

    I have found this up and down thing very confusing.

    One day my fingers are really swollen and the next the are not. The pain and stiffness hasn't gone, but it is better than before.

    My knees were painful and it was hard to go downstairs, now they are ok.

    I am not looking forward to work tomorrow as it's a 6.5 hour shift with no breaks.

    I will go to bed as soon as I have had dinner and try and rest.

    I am trying to get some housework done today as I have let everything slip this week.

    We have 4 dogs, so it's a challenge lol.

    Nic x

  • First off - ditch the housework!

    I now understand where you are in this journey and it sounds as if you've got a good rheumy. So yes I would believe her diagnosis - sorry. It'll take time to come to terms with it, but you're doing well so far by asking questions and trying to understand it all. My advice would be to start the meds as soon as possible, and also start looking after yourself especially to start with while you get it under control. So pace yourself, and try not to get too tired - but also do tryo to take gentle exercise as keeping your muscles supple helps protect your joints.

    Chances are that it will be wildly up and down for a few months yet until the meds start to work - but sadly that's typical of this disease. But things will get better, so try not to get too down about it. Most of the time my life is good and the RA is manageable (just not today, but that's another story). Anyway, look after yourself. Polly

  • Thanks all.

    I shed some tears before I even knew what it might be.

    I was struggling so much with my life, and I even told my oh that if I did have a serious illness I was going to leave.

    I had images of just disappearing to somewhere that nobody knows me and just getting on with it on my own.

    I am not used to relying on people, better start learning.

    He has been great and supportive, but doesn't really believe I have it, so he is just waiting for it all go away too.

    He has worked really hard this week tidying the garden in preparation for putting it on the market.

    Life would be a lot easier in a smaller house with no or less mortgage to worry about every month.

    I can't afford to take sick days from work.

    Hope you are ok Polly x

  • Dear Elsa, the drugs are a necessary evil, you may well be like myself seronegative.., my diagnosis came from ultra sound and probably raised plasma viscosity, have a chat with us and how are your colleagues towards you?, I would have a private chat with your pharmacist at work if you get on well with them, im sure they would be only too happy to help you, or chat with your gp.

    We go through grief, denial ,anger and depression with this illness it is such a big thing to adjust to you xx

    If I can help in in any way please message me

    Alison x

  • Thank you x

  • I was diagnosed in 2008 when I came to live in France. I have never had a flare up of symptoms, I generally have aching (but not painful) joints most of the time, always seem to feel tired and the only joint that is being destroyed (as seen on X-ray) is a joint in my third toe on one foot. I take Methotrexate and despite my inflammatory markers not being sky high because I have this one joint that is deteriorating my french rheumatologist started me on Rituximab (biologics) and I have had three cycles so far. I am convinced that because they diagnosed the disease early and have treated me aggressively I have had very little deterioration in my joints and can do things relatively normally although I have had to stop running. My advice would be the same as summers - the drugs are a necessary evil to keep things at bay. Good luck. Wendy x

  • Thanks again for the replies.

    I've had a better day today, physically and emotionally, apart from the ignoramous who I haven't seen for a while.

    He came into work and when he saw me he took a step back and said " I hardly recognised you, you look so much older since I saw you last". I wanted to tell him he was even fatter, but thought I should keep my mouth shut.

    I know myself that this has taken it's toll, I see myself in the mirror every morning when I am trying to bring some life back into my face lol.

    One more...of many...questions. My finger ends seem to bend too far back when I lift things, it's as though there is nothing holding them in place. Is this a symptom?

    Nic x

  • Yes I think it is. Not one I've had but your joints change when inflammed as everythings stretches - which is one of the reasons why it's important to keep some muscle condition as this helps protect floppy joints. But at early stages things can also turn round quite well, so today's frightening symptoms could well be a dim memory in not too distant future. And I now look disgustingly healthy, which is another problem as no-one thinks I could feel so rubbish when I look glowing with health. You can't win with this disease! Polly

You may also like...