Recently diagnosed as RA sufferer

Spicelady
Spicelady Member Posts: 4
edited 24. Aug 2018, 02:42 in Say Hello Archive
I'm a 76 year old realatively active person who has only ever visited the Doctors when in dire straights.I have however been a Raynards sufferer since my teens but never had any sort of medical treatment apart from a monstrous battery and gloves some 40 years ago which went in the cupboard never to be seen again.I have had osteoporosis for many years and taken Ibandronoc acid as prescribed but of late taken a holiday from this treatment. In the middle of June my hands fingers and wrists started to swell and stiffen up and following a Dr's visit and blood test a week later the Doctor asked me to take a further specific blood test which revealed ESR 61-RF 299.5-CRP 31. I had prednisolone 20 mg for 2weeks during which time a hospital appointment came through so the pred was reduced 15,10,5,2.5 and for a week nothing prior to my consultation. During the Prednisolone treatment my swelling a stiffness abated and I was able to wear my wedding and engagement rings. At my consultation RA condition was confirmed and after my chest X Ray showed some shadowing he put me on Hydroxychloroquine 2 X 200mg daily since then I have seriously declined in mobility on Monday prior to walking and climbing stairs for the consultation I have no strength almost to raise myself off the toilet or push myself up from my sofa, what are fellow sufferers experience in the early treatment ,are they similar or is the Hydroxychloroquine
having some adverse affect, as it's the w/e I turning to the community for your advice. Thank you from a new member.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Spicelady, welcome to the forum. When you first hear you have an autoimmune condition it can be really devastating, I found that once my symptoms were acknowledged my joints went on a field day, it was quite frightening. However you have been diagnosed which is good, you have been started on treatment which is essential to stop any complications and you will be monitored carefully. The shadow on the x-ray will mean fine tailoring of drugs.

    Prednisolone is a steroid and it's great at reducing inflammation almost immediately. Unfortunately it's really bad for you, it thins tissues - any and all of them, you can imagine it is kept for emergency use. There are injections into joints with steroid, they are better as they pretty much stay put, it doesn't sound like this will help you.

    Fatigue can be as bad as pain and is a common symptom with RA. Treatment is rest, some activity but obviously limited, it's a fine line between doing nothing and having pain and fatigue whenever you have to move and forcing yourself to get on as you feel you should be able to. Hydroxychloraquine takes about 12 weeks before you feel the effects. Here's link to information on your diagnosis for those newly diagnosed.

    https://www.arthritisresearchuk.org/arthritis-information/inflammatory-arthritis-pathway.aspx

    Have you got pain medication yet? There are different medications available, your GP will be able to help with that. It might also help your fatigue if you are more on top of the pain. Many of us take tablets regularly rather than wait until it's dire with some form of top up tablets if needed.

    Do let us know how you are doing, ask any questions you need to - we are here to help

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am sorry you have had to find us, what a devastating diagnosis this must be. I have another form of auto-immune arthritis (psoriatic) plus osteoarthritis but of all the drugs Image taken hydroxy has never been one of them. I am not surprised that given the results of the chest X-ray you have not, as yet, been given a DMARD (disease modifying anti-rheumatic drug) so at the moment nothing is controlling the activity of the RA. Hydroxy is an NSAID (non-steroidal anti-inflammatory) so that is going to try to reproduce the effect of the steroids but without the nasty side effects. I am not sure how much you know or have been told so I apologize if I am going over old ground.

    Auto-immune arthritis is caused by an over-active immune system which causes the body to attack itself. There are hundreds of auto-immune inflammatory conditions, I was born with eczema and developed asthma aged seven, both conditions being on that spectrum. They run in families but can also start out of the blue. The steroids were effective because they always are but they do not address the root cause of the trouble so con us into thinking the problem is solved. (You mention wearing your engagement and wedding rings, my originals are safely stored as I had to buy bigger). I took tablet steroids for three years, along with alendronic acid to protect my bones, it was lovely to feel 'better' in myself but I weaned myself off them due to the long-term risks. Now I feel moderately grotty most of the time whilst understanding that is the best I can get. I began with one affected joint, now it's many more which can make life challenging: every move hurts something somewhere. :lol:

    The inflammation affects the whole body whereas in OA it is localised, and the tiredness the disease causes is quite unlike any other. I have had ESR and CRP in the 170s, your figures are not that high but they will affect how you feel. Hopefully the hydroxy will begin to reduce those numbers but it won't be enough to bring disease activity under control. I hope you have another appointment with the rheumatologist soon so a plan of action can be discussed. The DMARDs can affect one's breathing so they may be considering what else to do; as to what that might be Interested cannot advise because I am not a doctor.

    I began back in 1997 when I was 37 and OA was diagnosed in 2011. I am able to walk unaided for a little while but I have been using a seated rollator for years and wouldn't be without it. As for rising from chairs I prefer ones with arms but if they are not present I bolster the seat with whatever is to hand to make it higher. We have replacedtwo lavatories with higher versions and in our en-suite I have fitted a raised seat from Amazon, I opted for the extra 6" version as I am tall.

    I am tired and can't think of anything else to say: please don't be afraid to ask questions, we all get it because we've got it but cannot advise on matters medical. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hello and welcome from me too.

    To start at the end :wink: .......I guess the hydroxy could be causing your weakness and fatigue though these aren't symptoms usually associated with it. They are, unfortunately, symptoms readily associated with RA. I've had RA for many years and do well on a combination of hydroxy and methotrexate. Hydroxy is not an NSAID but a mild DMARD (Sorry, I have to disagree with DD here https://www.arthritiscare.org.uk/treatments-aids-and-equipment/medication-for-your-arthritis-/disease-modifying-anti-rheumatic-drugs ). I expect you've been given it because the stronger ones can affect the lungs which is why we have the chest x-rays before embarking on such treatments. I'm trying to work out a timescale here – started mid-June, pred for a few weeks and so hydroxy for.......well, not very long, I'd guess. Probably not long enough for it to be working well. These meds can take up to 12 weeks to really get going. Ignore what the pred did. That's in a category of its own. Yes, pred is a wonder drug but damaging, especially for someone who already has osteoporosis as it can cause it in those who haven't. So, according to my rheumatologist, can RA which isn't great.

    I think your problems are due to RA rather than hydroxy but, if you're concerned do ring your rheumatology helpline for advice. As for getting up from the loo, sofa etc – there are lots of devices on the market to help. Raised loo seats are essential for most of us. Extra cushion(s) on the sofa might help temporarily at least. Anything to raise it higher.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My apologies, I confused my DMARDs and NSAIDs. :oops: DD
  • Spicelady
    Spicelady Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks for all your comments just a case of buckling down to the nasties shall contact my RA Clinical nurse just to have her opinion on pain management which I never had advice on at my consultation.x
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I'm not sure consultants do talk about pain management. You could always ask your GP to refer you to a Pain Clinic but it might be a bit premature at this stage as, with luck, the meds will begin to help soon. The link that Yvonne gave you is a good one and you might find this one useful too https://tinyurl.com/y93t3b9b . I do hope we haven't inadvertently given the impression that you 'just have to buckle down to the nasties'. In a sense, we all do but it's very difficult when it's all new and you have other issues too.
  • Spicelady
    Spicelady Member Posts: 4
    edited 30. Nov -1, 00:00
    Put a callback request to my surgery, within the 1/2 hr had a Dr talk to me regarding some pain relief and hubby collected Co-Dydramol later in the day, so onwards and upwards.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    It's a codeine based painkiller. Drink plenty of water etc and eat plenty of fruit and veg as they can block 'the drains'. If necessary ask the pharmacist for a gentle laxative. I hope it helps.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    What a lovely husband, I hope the pain relief has made a positive difference. I take 30/500 cocodamol and have docusate capsules from my GP to help with constipation. I also eat plenty of nuts and seeds (a lovely dessert is Greek-style yoghurt liberally doused with pumpkin and sunflower seeds, flaked almonds and pistachio kernels). DD

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