Confused

Hi thanks to addmin for letting me join this forum..ive been suffering with bad hands for over 12 months now (started with a visit to dr as my fingers were turning white and no felling) tested for gout but cam back negative but told me i had reaynauds..months passed and changed dr due to move. Had new blood test last yr results were showing abnormal count so had appointment to see specilist last month (jan) had bloods, xrays taken and was given two lefflets (hydroxychloroquine,methotrexate) my question is and i know there are no dr in the house so to speak..do i have rheumatoid arthritus?

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  • Hi and welcome!

    think you probably do have RA from what you say but there are a number of inflammatory diseases for which these drugs are also prescribed and sometimes RA is just called inflammatory arthritis when it's seronegative ie your rheumatoid factor is negative.

    I would see your GP who will have the letter the consultant writes from this appoimtment to find out if RA has been diagnosed. I recommend you ask for a copy of this letter and your most recent blood test results as it really helps with the self management if you can learn as much as possible.

    You will need folic acid and have regular monitoring of your blood while on Methotrexate as I'm sure you know - but just in case this wasn't explained...

    Good luck with the new drugs they worked very effectively for me!

    Take care

    Twitchy

  • It sounds like ra to me, Twitchy is right follow her advice.xxxx

  • You say you've got the leaflets ..... does that mean you are going to start those drugs now, or have you got another appointment with the specialist or your GP first?

    The reason I ask this is because it seems pretty crazy to just give someone the drugs without actually telling them what disease they have!

    Yes it does help to learn a bit about the disease - once we know what it is of course - and also to let the doctors know that we would like to be kept informed.

    I suppose there's another possibility ..... it could be that they're not sure yet but think you might need these two drugs. It can be hard to diagnose RA and other forms of inflammatory arthritis and sometimes the best doctors will take it slow. They could have given you the leaflets to get you up to speed on the drugs you are likely to take.

  • Sounds similar to my experience of about a year ago, except I got to a specialist much more quickly. If you are using the NHS the specialist might not have your detailed results even yet. He/she should certainly get you back to tell you which flavour of arthritis you have, and which drug you should start on. On my 2nd visit to the specialist I had a steroid injection which worked straight away while the hydroxychloroquine took effect. In my case the RA markers were unambiguous.

  • Before you start Mtx you are supposed to have an appointment with a Specialist RA Nurse who will explain the treatment & arrange for you to have very regular -every two weeks to begin with- blood tests. If you are just given a prescription without this you should speak to your GP or Rheumatologist & ask to be given more information.

    I don't want to alarm you, but there is a protocol to be followed with these drugs.

    I'm sure your Doctors will put you in the picture soon, but it is unnerving not to be told isn't it?

    I hope you get sorted very soon ....Kathy

  • Hi Frechfield

    Firstly welcome to the site :)

    Your information seems a bit vague at present but the above advice from others is sound and helpful as can be with the info given. As you get more info please be assured to let us know what you are comfortable sharing and people will share further to help you settle into your treatment etc.

    As for methotrexate (MTX) some tolerate it well and some struggle with side effects which undermines the effectiveness of the med for them - prepare for the worse and hope for the best is my motto with the meds. Get to know what works best for you - some take the med last thing at night so that they sleep through the worse of any side effects they may have and some take it in the morning. I am a morning person and I find that taking the med with porridge helps me keep any nausea side effects at bay, some find supping peppermint tea effective. I now steer clear of spicy and/or sugary foods in the main and try to eat plenty of fruit and veg - too many tomatoes can aggravate the gastric system as they are acidic and I know if I've eaten too many over a couple of days.- Drinking loads of water (and then some more water) helps to keep headaches to a minimum.

    I'm sorry I cannot give any insite on hydroxychloroquine as I have not had this med but if you seach the topic lists on the right of this page you will find past post remthis one - remember to try and look for positive info regarding how others have strived to make the med work for them because the nature of things is we post, mainly, when struggling and needing moral & factual support so it's easy to get a negative skew on the med if you don't keep this in mind.

    I think it's fair to say that no med will work 'overnight' (except steroid injections!) so when the journey forward gets tough remember to tap in and use the good people here for support -also the NRAS has an excellent support line which you can ring.

    I hope you get the treatment started soon and that things start to settle down for you.

    All the best Ali

    PS It would be worth asking your GP or rheumy doc to refer you to an occupational therapist re your hands as their advice can be invaluable. They will also assess to see if some kind of splints may help - I was given exercises to do and a set of soft splints to protect my thumb joints when do heavier/repetative stuff like making the bed, gardening and typing - I don't wear them often but they are a God send for those times I need them.

  • Hi frechfield,

    please feel free to call the helpline and have a chat. Our number is:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    We can give you more information about rheumatoid arthritis (RA), symptoms, diagnosis and treatment.

    Regards

    Beverley (NRAS Helpline)

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