what should I consider doing

Hi All,

I am new to this site, hope someone can shead some light on this for me.

I'm so confused went to GP in Nov c/o pain and stiffness to wrists ankles feet and hands ccp 3.5 hand x-rays did show oesteo changes (which I already knew about, not realy a problem hands won't move and fingers won't bend if cold) grip in hands good, however unable to lift a pan, difficulty preparing food,weakness of wrists - referred to rhuemy-who saw last week - he eleuded to the fact I have gery hair and things wear out!! said I have inflamatory arthritis -refered me for the o/a trials for hand pain, as when he squeezed 1 joint it hurt! totally dissregared my other symptoms, pain,stiffness,fatigue I feels as if I am walking through treacle some days. My wrists, ankles and feet are more painful at night when they start to stiffen (did do SLE tests -ve) now getting pain in both shoulders, centre of back T4 -T6 fleeting pains in elbows and hips, my knuckles on both hands are now getting much bigger I think I am developing s swan neck finger (middle finger R hand)optician found some dry sopts in my left eye - not sure what to do about the trial do not see that consultant for 6 weeks. I have been contacted by a research nurse who also disregared my other symptoms, do you want to be on this trial or not.

Any suggestions??

regards

joylin

11 Replies

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  • Hi Joylin, yes go for anything you can as they will investigate all possibilities. My introduction to RA was showing my GP a swan necking middle finger on my left hand. that was 2 years ago now, I am on methotrexate injections 20mg and at last am having painfree days and alot less fatigue that was frustrating to say the least as nobody can see that. It hasn't bee a easy road; I started and stopped with meds, went into denial but untill I excepted the diagnoses I didn't have any peace, now I have given myself the rest I needed and did as the Dr's ordered and am better for it. Good luck.

    Carol

  • Thank you caggy, its so confusing especialy when o/a is also a factor.

    regards

    joylin

  • Fibromyalgia can also feature highly with RA,and can give alot of the pains you describe, I thought I had that but was given a couple of steroid injections while the MTX was kicking in and now the shoulder and arm aches have disappeared.

  • Hi Joylin, diagnosing some of these things can be quite complicated as there's a lot of similarities between the different diseases. And an aggressive and erosive osteoarthritis can be really quite awful. However, if the consultant you saw said that he thought you had one of the inflammatory arthritis group of diseases did he not say what the next step was? ie doing more tests or X-rays and then discussing treatment at next appointment? (Although there is one type of osteoarthritis that is sometimes described as inflammatory arthritis, most of them aren't). And some unlucky souls get RA (or one of the others), OA and fibromyalgia which makes for a diagnostic pickle.

    But re the trial, like Caggy I'd go for it - you can always withdraw later if it becomes too complicated. And the research nurse would only be focused on her trial, so it isn't surprising that she ignored other symptoms. Irritating for you, but not a surprise... Hope you did at least get some pain relief for the short term. Polly

  • I'm like you with the diagnosis of inflammatory OA, I also get very tired & require to take solpadol 3 times a day to function. I've already had one knee replaced & will need the other one doing soon. I had a steroid injection before Christmasm which only helped a bit. I'd have hoped for it to be more effective & was taken back when a doctor friend suggested that the problem was more mechanical than inflammatory. I think inflammatory can be treated whereas OA is not so easily treated. I take lots of supplements plus sulfa & Plaquenil. A recent xray showed that the deterioration wasn't as bad as it coulod have been without the meds.

    It's tough though isn't it to get the treatment right? I'm still trying to get it sorted after two years :(

  • Don't know if I'm missing something here but am feeling a bit p-eed off on your behalf in that you've had a diagnosis of inflammatory arthritis which invariably needs treatment but apparently not been offered any treatment?? They seem to be putting the cart before the horse in selecting you for this trial before starting you on an appropriate drug. I'd say go for the trial by all means but if you are indeed not getting any treatment then phone up and say 'HELP!!!' in as many different ways as you can think of, don't wait 6 weeks. You don't have to be a patient patient come what may, not with all those symptoms. Ask for the appointment to be brought forward, you might feel like that's quite cheeky but it's not, it's the name of the game.

    I was interested that you describe some of your pains as 'fleeting' because that's just what I get & I use the same word. Maybe I've got a sick sense of humour but I occasionally laugh out loud at some of the weird sensations or actually quite gruesome pains that 'visit' so fleetingly - they seem so bizarre - though I can afford to perhaps as I don't usually get lasting pain.

    Good luck, Luce x

  • Thank you, the Dr I saw referred me for the trial because the PIP join on my little finger right hand hurt when he squeezed it!

    It sometimes feels as if there are "worms" wriggling in my knuckles, and toothace in my wrists, ankles and feet. Like you I laugh out loud to releive the fear I feel.

    I can not chop veg unless.. I am stood on a buffet and have the full weight of my shoulders to aid me as my wrist feel weak. I will start to shout help.

    thank you, Linda x

  • Whoops !! I meant MCP joint not the pip joint I do have osteo arthritis in 2 of these joins in my other hand.

  • push for more info i would be intersted in finding out about the trial if I was you x

  • It is really annoying to have anything dismissed as wear & tear/ mechanical only/ ageing isn't it. Most of us here will get OA to a degree but some people have a rapid onset very aggressive form and that must be awful. I know from the Arthritis Care Living with Arthritis forum that some people get it in there 20s and 30s so it's not fare to associate it only with getting older.

    I have it in my fingers and it didn't arrive until the RA had already started so they are closely connected in my case. The main way of diagnosing inflammatory arthritis is through blood tests and most common way of differentiating between the two is looking at which joints are affected and how they feel. The knuckles and middle finger joints (MCP) tend to swell and get hot with RA whereas the top finger joints (PIP) tend to go nobbly and sore with OA. For me the pain is very different in my hands. With the OA, which I think is secondary (ie triggered by the RA) it feels stinging and more like conventional pain and once the bony nodes had arrived it didn't continue to hurt - but aches if I squeeze them - especially when cold.

    With my RA, initially it was as Luce said with fleeting surges of intense pain in my hands and fingers and intense burning, acid like pain in my wrists. Then it just settled in the ulnar joints of the wrists and MCP joints of fingers and knuckles and my inflammatory markers (ESR and CRP) were pretty high, which some people's are not despite RA/ inflammatory arthritis. RA pain is weird - like toothache really and is pretty hot and overwhelming when in flare whereas I think OA does feel more mechanical somehow but that's not to dismiss it.

    It's not systemic but I think it's a bit of a nonsense to think that RA and the other autoimmune conditions are the only ones that carry fatigue because I've read many times that severe OA and Fibro both have this symptom too.

    So you see it is a very complex mindfields unless you have very obvious classic signs - which many don't. The best thing you can do is keep researching and become an arthritis geek because in these straightened times rheumatologists are apt to only diagnose and treat those whose disease shouts loudly so you will probably have to do the shouting to get anywhere. I would do the trials and also use the Arthritis Care site to find out more about the various forms of arthritis so that you can get some idea of where you fit in. The drugs are amazingly effective for inflammatory arthritis for many but they are also cytotoxic and can have many side effects so don't shout for them unless you really feel convinced that there is more to this than Osteoarthritis or you will be like me and always be wondering if you should be taking drugs this powerful. Hope this helps. Tilda x

  • Hi Joylin

    As the others have mentioned, there are many different types of inflammatory arthritis, and often they will have overlapping symptoms, which can make differentiating between them difficult. Sometimes it is only with time that the exact type of arthritis will become clear, however, with rheumatoid arthritis there is good evidence that the earlier the drug treatments are started the better the long-term outcome. If you are not happy with the outcome of your rheumatology appointment you are entitled to a second opinion, which would mean being re-referred by your GP.

    Arthritis Research UK's website is very good as it goes into detail about each of the different types of arthritis, including the symptoms and common treatments: arthritisresearchuk.org/art...

    We also have an article on how RA is diagnosed which you might find helpful: nras.org.uk/about_rheumatoi...

    One of the positives of participating in trials is that you will often be monitored very closely, and hopefully have access to the research nurse if you have any questions.

    I hope you are able to get to the bottom of things soon.

    Kind regards

    Sarah Kate

    NRAS

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