Not given meds - But worried about side effects

Hi everyone

I was diagnosed over 2 years ago after suffering from what I though was tennis elbow & frozen shoulder for over 10 years - only to be told by my doctor that i have Rheumatoid Arthritis after he looked at my hands, the joints are very swollen & some fingers have bent inwards on the top joints, but he advised me not to take medication as he said my blood count was not high enough & the effects would make me feel worse than the aching in my joints & limbs! - He did not sent me to see a rheumatologist as he said it is better to leave it as long as possible! after reading all your blogs & stories i am beginning to think he is trying to save money for the national health!

I am very sensitive to any medication I have taken in the past for other ailments not related to RH & he is loath to give me anything - I only take the strongest ibuprofen i can get from the chemist -But my finger joints are so sore 7 swollen I find it difficult to do many things - I would welcome any advice from anyone as some days i dont want to get out of bed as my knees dont bend & my ankles are sore & swollen - sorry for bleating on, but I have a house full of boys & a husband who says eveyone has their aches & pains as they get older & I have to accept I am no spring chicken any more!

13 Replies

oldestnewest
  • Just a quick message Perri cos on the way out but I felt I had to reply because I was absolutely horrified by your GPs approach!

    RA is notoriously difficult to diagnose - blood tests are an indicator, but not a way of definite diagnosis and only a rheumatologist can make a formal diagnosis and prescribe the specialist meds which will, almost certainly, be needed to manage the inflammation and hopefully to prevent (further) joint damage.

    The "old style wait and see what happens before prescribing meds" approach is very old hat and current thinking is that fast referral to a rheumatologist if RA is suspected, and starting quickly on meds is essential to give the best possible outcome in the future.

    Please don't think I am trying to scare you here - I'm really not - but I am just so worried that you are not getting the help you need, if indeed what you have is RA. Your GP really shouldn't be trying to frighten you about the possible med side effects either!

    I also wonder if your finger damage is osteo arthritis, rather than rheumatoid (though some people have both) because my understanding is the RA doesn't typically affect the top joints of the fingers (although other types of inflammatory arthritis can do).

    Sorry, I fear I am waffling hear, but I would strongly encourage you to go back to your GP and insist on a rheumatology referral as soon as possible so that you can hopefully get a proper diagnosis and the help you need.

    Thinking of you.

    Tilly x

  • Sorry, forgot to say that I know the idea of meds is always scary - particularly if, like you, you have had problems with meds in the past. But there are loads of RA meds out there (I've had many, if not most of them, over the past 17 years) so hopefully, if you do need meds, you will be able to find a combination which helps you without unmanageable side effects.

    Really, really hope you can get a rheumatology appointment soon.

    Tilly x

  • Perri how awful for you but not surprising. Families take longer to accept RA than anyone else. I think the current guidelines for treating this condition is early and aggressive to slow it down and reduce the chances of joint damage. If i am wrong then someone will be along soon to say something. I would ask gp for a referral as these things can take very long time anyway so the sooner you are sorted the better. Keep us posted and best of luck xx

  • I agree with both of the above comments. Diagnosis early treatment and them hopefully a good prognosis.referal first them make decirons from the results.

  • Yes I'm with Tilly on this completely. Its shocking that your GP hasn't referred you in all this time. Early diagnosis by a rheumatogist is very important and then if you do have RA you can do your research and make an informed decision about whether or not you want to take the drugs - and as others have said you would have many to choose from.

    RA is no respecter of age and even some unlucky children get it and there are plenty of under 30s who come here too so you can tell your hubby to put that in his pipe and smoke it! You may only have wear and tear arthritis (osteoarthritis) but if your hands are as bad as you describe then any form of arthritis at its most aggressive means you need care and support from your health professionals. Push hard for a please! Good luck. Tilda

  • meant to write push hard for a referral please and don't accept no for an answer! These drugs can be life changing so if you do have RA then you should be taking them and enjoying the benefits not worrying about possible side effects. I only had the RA pain for a year and now take Methotrexate by injection once a week and another disease modifying drug and I'm finding my life is more or less back to normal. That's what these drugs can do for you so please don't allow this ridiculous nurse or GP to put you off and leave you in pain. At the very least your GP should be prescribing stronger anti-inflammatories for you not making you buy them over the counter!

  • Your doctor needs shooting! He is going against all current advice and national protocols for early identification and treatment of RA.

    Please insist on a rheumatology referral. Get advice from NRAS on what to say. Ask to see another doctor if your regular one won't refer you.

    As someone else has said, it may not be RA, so you might not actually need treatment, but only a rheumatologist can tell you that - not a GP.

  • Wow!

    Just logged in & thank you all for your helpful comments.

    I will definately insist on a rheumatology referral & get a proper diagnosis as I have felt for a long time that I was dismissed without proper invesigation & made to feel like I should expect some wear & tear at my age - 53 is not old & I will keep you posted on outcome

    Thanks once again xx

  • Hi Perri, I just got diagnosed this year with zero negative RA my blood tests didn't show anything except for raised liver function. Previous blood tests when I've had aches and pains did not show anything specific. As my Dad had RA quite badly my GP has always kept an eye on it. However when things worsened this year he sent me to the Rheumatologist it still took an Mri scan on my hands to prove it,so now have just started taking meds. It's not as bad as I thought as previously anti inflammatory's always made me feel ill, and I would refuse to take them. I am also 53. Sue

  • All of the above and try to get them to do x-rays and MRI because that can show up RA. My RA started in my shoulders and elbow and I thought I had a trapped nerve! I was lucky to get a v understanding GP and rheumatologist who threw everything at it to settle it down. Believe me to be pain free and un-zombified is worth making a fuss for. PS. I am a male who also goes fishing but got to disagree with hubby, hope he blanks until he shows a bit more understanding:-)! All the best.

  • One possibility may be to change your GP. I lost six months when a breezy dr in the group practice where I used to live told me it was wear and tear. I was quite ill but insisted as I'd seen my mother with ra and wanted it checked out. I was able to see a different dr in same practice. But more recently when I moved to Scotland I moved from one unfortunate experience to a much better practice and was surprised at how easy it was. It's worth thinking about as a supportive gp is really a big help.

    Hope you can get some movement now

  • Hi Perri, I'm with everyone else, Hope you get that appointment soon, as the sooner the better. All advice and recomendations on here come from people who have experienced similar pains that had no names until diagnosed. There is so much to learn about this disease that the GP is ignoring to you peril. Like the above comments the earlier treatment is started the better, we all know how drastic that sounds but like you I had stiff and swollen joints on and off for years before one GP took notice of a wonky finger and ordered the right blood tests. It all sounds quite scary but there is hope out there and those of us who have stuck to treatment and found the right ones are testament to persevering to better painfree health. Good luck.

  • Hi Perri

    I really just wanted to re-iterate what others have said on here. It sounds like the information your GP has on RA is out of date, and these days they would recommend starting you on treatment as early as possible. While the medications do have 'potential' side-effects these are only potential and have to be weighed up against what the disease can do when not controlled. If your GP is unwilling to refer you, as Cathie suggested, see a different GP but it is important to get referred as soon as possible. If it's been a while since the bloods have been run, this might be the first step, but even if they are not very raised you should be reffered if the signs and symptoms are pointing towards RA.

    If you want to discuss this in any further detail, please feel free to call our helpline on 0800 298 7650.

    Kind regards

    Victoria

    (NRAS Helpline)

You may also like...