Inflammatory Arthritis ?

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Maturecheese
Maturecheese Member Posts: 130
edited 19. Feb 2018, 16:10 in Say Hello Archive
Hi all.

I was finally diagnosed with 'inflammatory arthritis' just over a week ago after 13 months of continuous GP visits. Note they said Inflammatory Arthritis meaning they don't know which one and yet they have put me on 15 mg Methotrexate with steroids to lead in. I took my first dose 1/2 hour ago and it would have been nice to get some support other that a leaflet shoved in my hand. I am going to insist that they test me for RF and anti CPP's on my next visit because I don't think they have yet.

Im 54 and I was an avid gym user doing crossfit workouts and weights (but with a big alcohol consumption which I have now had to address) but 15 months ago it all started coming undone. First symptom was costochondritis and a stiff neck. This went on for months including stiffness of the upper back, my left shoulder started making my collarbone pop and eventually stiffness of the upper legs. Finally after a good hour session on ths x trainer (which was about all I could now do) in Dec my knees swelled up like balloons and eventually they drained them and injected steroids into them. They are now damaged though.

Anyway there is a brief introduction to my woes :).

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello

    Welcome to the forums. I am sure you will find that you get advice, help, support, light relief and find the members are friendly.

    There are members on here who have Inflammatory arthritis and I'm sure you will get information from them. Arthritis Care and Arthritis Research UK both have very useful and information websites The links to them are:

    www.arthritiscare.org.uk
    www.arthritisresearchuk.org

    They also have some useful information booklets and leaflets. The following may be of interest to you:-

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

    Arthritis Care has a freephone Helpline if you would like to talk to someone who may have the information you require and can answer your questions. It is 0808 800 4050.

    It might be an idea to post in our Living with Arthritis section of the forum as this is the place most people use.

    I am one of the moderation team and we all have one or mor of the arthritis hangers on or look after some family member with the same.

    Best wishes
    ChrisK
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you but I am sorry you have had to find us. Inflammatory arthritis is the umbrella term initially applied until conditions can be ruled out - with around three hundred auto-immune inflammatory conditions known unless one presents with the ideal symptoms in the perfect place or places diagnosis can be a lengthy process. My version, psoriatic, is supposed to begin in the small joints of the body such as fingers and toes, mine chose my left knee. I don't have much psoriasis either but there is no rhyme nor reason to this nonsense. It is also a sero-negative form of auto-immune arthritis (i.e. no RF is present): I feel reasonably sure that you will have been tested for rheumatoid factor because that is the first, basic test.

    I presume that your meds have been prescribed by a rheumatologist as GPs cannot prescribe meth. The standard meds for all auto-immune arthritis are DMARDs such as methotrexate, sulphasalazine and hydroxy, which can be combined with NSAIDs such as naproxen. These are required to control the immune system in order to reduce disease activity. GPs are nowadays much better at recognising the signs of inflammatory arthritis and I have seen for myself that the quicker the diagnosis, and the sooner one begins the meds, the better the outcome can be. I began back in 1997 aged 37, I know why I have it but if yours has come out of the blue that must be disconcerting to say the least.

    As you are in the early stages of immuno-suppression I urge you to get a flu jab ASAP: it won't protect you against all strains of the virus but it does make a difference. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
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    Thank you for the replies: dreamdaisy, I don't know if I have been tested for RF or anti ccp's. The gp didn't do those blood tests but I seem to remember on my first visit to the Rheumy in November, he sent me for a blood test and a full CT scan. On Feb 9th when I next saw him he diagnosed Inflammatory Arthritis, gave me Methotrexate and a leaflet and said see you in three months. The problem is the just don't tell you anything and when you think to ask later it's too late. I'm hoping the Rheumey nurses that do my periodic blood tests will be able to furnish me with more info.

    It's been a shock to the system though as I have had to go from a bad habit of around 70 units of alcohol a week (for around 15 years) down to one beer a night so far and I'm led to believe even that is too much. I have also been told I have to quit smoking even though I only smoke 2-4 **** a night. Feels a bit like I must be thoroughly miserable for the rest of my life. (:


    Anyway I'm not sure if I am supposed to carry on this thread on the introduction page
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Sometimes the professionals forget that patients do not know what they know - for them it's routine whereas for the patient it's far from it. :roll: I have been given leaflets and told to choose the drug I want but, having being under medical care since childhood that was no big deal for me: it must be a huge one for someone new to medical matters. The forum will offer as much support as you want - more people tend to look in on the Living with Arthritis board on here but you can keep posting here, I'm usually around.

    Alcohol is a tricky one, for the first twelve weeks or so it is important to keep it to the minimum (none is even better) because it is necessary to establish how the liver is coping with the meth, so it's only fair to that wonderful organ to give it a fighting chance to cope with the new demands being placed upon it. Initially I had my bloods done every fortnight and I hope this is the case for you as close monitoring is essential. I chucked toys and spat dummies every now and again when I had to stop for various reasons (normally drug reactions) but things were eventually OK and I could carry on as before - and happily did. Obviously smoking is deleterious to the whole body (and the wallet) plus it makes you stink - I used to smoke but gradually stopped as it got harder and harder to physically get out to buy them.

    Is there any family history of auto-immune dross such as eczema or asthma? This stuff can skip generations - my parents dodged the genetic bullets they joyously donated to me - but it can also start out of the blue. Life is a health lottery but when you're used to being well you don't know you're playing. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
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    Again thanks for your reply. I gather you are quite an authority on here considering your long term experience with auto immune problems. I hope I can show your positive attitude in the future.

    Yes I will be tested every two weeks to start with and as far as I know there is no history in my family of this kind of thing apart from Osteoarthritis (mother) and Polymyalgia (auntie) if they count and my sister has Psoriasis.

    It's been a struggle to cut down from 1/4 bottle of whisky and two ales a night to just one ale. It's why I delayed starting the mtx for a week. (9 days now and coping so far) Will try none soon but need to go to 1/2 an ale first.

    As for smoking , the way i see it it 's one thing at a time or I could put to much stress on my body.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I know my stuff regarding the meds etc. and yes, having a long history of life never being anywhere near as good as others had it does make it easier to deal with.

    Osteoarthritis is the most common form of arthritis (I have that too thanks to the joint damage caused by the PsA) and polymyalgia is also known as polymyalgia rheumatica , an inflammatory condition that causes pain and stiffness in the neck, shoulders and elsewhere on the upper body. The advances in genetics have clarified why things run in families but even so this nonsense can start completely out of the blue. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
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    Hi and welcome from me too.

    I'm afraid both polymyalgia and psoriasis have an autoimmune basis so I guess you were always in the firing line.

    The reason for no alcohol is because both alcohol and methotrexate are processed in the liver and both can damage it. Hence the regular blood tests. I'm on 3 monthly tests now and my ALT levels are always good so I can enjoy my wine with my meal. Whisky is a rare treat though.

    You've done very well with cutting right down on the alcohol. The consultant is right, though. People who smoke are more likely to get RA and more likely to get complications with it. I gave up twice and vowed never to start again as I was sure I'd never manage to give up again.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
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    Thank you stickywicket. I am going to do my best to quit (temporary) alcohol by the end of this week for the 12 , or 11 by then, week duration. Once again thanks for the info.