A little bit of advice needed!

Hi everyone, iv had RA for 16 yrs now, iv struggled on with nurofen and avoiding certain foods, I have never been on any prescribed meds, I worry about the side effects and also if it's worth it? Can anyone share there experiences with Meds? Did they make a big difference to your life? Did you suffer side effects? Many thanks in advance xx

12 Replies

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  • Blimey! It's a personal choice of course, but I'd fight furiously if you tried to take the meds away from me! I can't imagine doing without them as they've given me my life back - and without significant side effects either.

  • Hi Kath

    I'm just wondering when you last had an appointment with a specialist?

    I would imagine the decision to medicate would be made on the results of the imaging they have taken of your joints, probably specifically your hands and feet, compared to imaging that was done when you were first diagnosed. It's all about the erosion to your joints, either stopping it in its tracks or stopping it from ever happening in the first place if caught early enough.

    For those of us with explosive onset or fast progressing disease for example there is no choice but to medicate and as for being worth it? Any side effect in the world is small fry compared to destroyed and twisted disabled joints and a lifetime of pain.

    Having RA is a bit of a commitment .... It's the only way I can describe it, you have to surrender to the process and battle through the different medications both due nature of their differing properties and side effects and equally because of the GP's, Consultants, and the NHS systems that prescribe them.

    Have you just been under the GP in all your 16 years of having RA?

    Things have changed a lot in that time regards treatment.

    Everyone here would love to give you the benefit of their experiences I'm sure of it, also you must be concerned about your condition to seek this site out.

    M x

  • Hi , from someone who left it and kept struggling as it was not too bad, I have permanant damage and wish I had started the medication when first diagnosed. I am now on humiria and it's the best thing ever! I would at least get the ball rolling with a referral to a Rheumatologist .

  • I wonder if you have a diagnosis of RA by a doctor or have you diagnosed yourself? I thought that these days Rheumatologists advised using all the excellent drugs available to try and stop the disease in its tracks. RA is a systemic disease and affects the whole body. high levels of inflammation in the body can affect different organs (as well as joints) and cause early death. If you meet certain criteria the drugs available these days can stop the twisted joints of the past and mean people keep mobile and do not end up in a wheelchair.

    Then, after trying to control the disease there are the excellent painkillers available on prescription which can help with sleep and getting through life in general.

    I have had RA for 36 years, I have had extensive surgery to correct the damage done in the early years. In the last six years I have finally found a drug ( a biologic) that works. You have to persevere to find one that works.

    There are mild forms of the disease but I truly believe that if you have the severe form of the disease you take all the help available.

  • RA without meds, for me impossible , I have no serieus side effects and without I would allready been in a wheelchair. I don't doubt your story, but when RA is active it is almost impossible to take no meds!

  • The meds gave me my life back-- I had to come off them recently and realised that I cannot function without them. I personally cannot wait to get back to full dosage. Good luck x☺

  • Are you sure what you have is RA? Sorry to ask a sensitive question but I couldn't cope without the biologic I take. I've had RA for about 18 years now, my mother had it from the 1950s. To compare us the difference is amazing, she just had gold injections mostly. Her hands were like claws so we're her feet, so badly distorted she had to have a toe amputated.

    No way would I go without the meds, I think everyone with diagnosed RA should see a rheumatologist regularly.

  • Yes meds do come with some side effects and yes it takes time to get the right ones for you but myself cannot go back to how I was before the meds. The pain and uselessness in my hands was too bad to go back. I much prefer the meds.

  • Don't know how you coped 16 years without prescribed meds, you must have a very mild form of RA. I've had loads of meds but RA has destroyed all my joints. IMO meds are worth it!

  • Good morning, as all of the other members have already said, I could never go without the drugs that I am currently getting or have never considered my life with RA without the different drugs I have had over a 40 plus year period of having the disease. In the beginning I was in a terrible state and found it really difficult to carry on every day life of being a father and bread winner of my family. I found it really painful to even pick-up a telephone (old style). This has since been remedied with surgery and infact I have had 5 operations to stabilise or replace joints that have been seriously damaged by the disease. I am now on anti- inflammatories, Methotrexate and anti-TNF (biologics) every 6 weeks by infusion. All of these drugs carry a health warning of possible side affects, but under the care of a fantastic group of rheumatology specialists and close monitoring, I have every faith in my well being. I would fight tooth and nail if I was told I couldn't have these drugs now and I would say to you don't believe everything that you read. If you have only been told by a GP that you have RA then ask to be referred to a specialist at your hospital as it it not without extensive tests that can prove you have RA. The other form of arthritis is Osteo which is extremely painful but is due to everyday wear and tear of the working joints. RA is different in lots of ways. Whatever form you have, I would advise you to get some professional help and if it means taking prescribed drugs then you know that you are being looked after! I wish you the best of luck.

  • Hiya Kathd52 & welcome. To directly answer your question, yes it is worth it. I can't honestly imagine how you've managed on an ibuprofen all these years, that's all my nan had 50 odd years ago, that & some foul smelling ointment. Thing is until you try a drug you've no idea if you'll have side effects or not, & for that to be a reason to choose not to take them, if you were given a choice, really isn't the best reason.

    It's true, the drugs we take are specialist meds & as such do come with a long list of possible side effects but there's no saying you'll have any or if you do you'll find they're no worse than remaining untreated. Just check the leaflet in your Nurofen box, that isn't much different to any you'll find you could be prescribed if you're started on treatment. You see the drug companies who make them have by law to list everything found when trialling the drug to gain a licence to use them for specific conditions/diseases. And that's the thing, it's a chronic disease, it won't release you from pain & deformation will continue without being properly medicated.

    You don't say, have you had a formal diagnosis? I'm wondering as you say you've struggled with Nurofen did your GP not talk to you about referring you to see a Rheumatologist?

    I was fortunate, I'd had a few weeks of really bad pain & swelling in my feet so I saw my GP who was on the case straight away & suspected RD so took a blood sample. A fortnight later I was diagnosed & on hydroxychloroquine, 2 NSAIDs & a short course of steroids to work on the inflammation whilst the HCQ had time to work. The effect was pretty immediate, I stopped waddling & could walk nearly normally so one NSAID was stopped, it was wonderful having virtually no pain! As the year progressed I had the odd course of steroids then my Consultant decided HCQ wasn't doing as good a job as it could so methotrexate was added. For some reason that didn't work so HCQ was stopped leaving me with just MTX & my NSAID & that worked! I was diagnosed in 2008 & now been on MTX 6 years & not at all bad. I had a few side effects when I started, but as my Consultant explained this is quite normal & they settled but as the dose increased so was the folic acid which really helped. I've needed to take a low dose steroid for a couple of years which I aim to taper off as I'm borderline for osteoporosis but that's my only real concern, that said I am prescribed a calcium & vitamin

    D supplement. I also have OA so my prescription list has grown but each med is necessary.

    I hope you consider seeing your GP & we're here if you want discuss any concerns, just ask & we'll help where we can. In the meantime maybe take a look at the NRAS website nras.org.uk or if you'd prefer to speak to someone you could always ring the freephone Helpline: 0800 298 7650

    Take care & I hope the replies you receive give you the ooomph to consider treatment. :)

  • If you have a medical diagnosis of RA and you are now struggling I would advise that you insist on seeing a rheumatologist for a new assessment. As others have said there have been lots of advancements in drug treatments and you have no need to continue to struggle; there is close monitoring for any possible side effects and the majority of folk do not suffer side effects. Don't continue to suffer get some specialist advice.

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