New and feeling a bit lost.

Angeleyes
Angeleyes Member Posts: 5
edited 18. Dec 2014, 03:12 in Say Hello Archive
Hi All, Am new to posting on any kind of forum but this diagnosis has left me a bit shell shocked and not many people seem to understand. I'm a 38yr old mother of two beautiful boys, wife to the most amazingly supportive husband and I work full time. I started suffering in June last year with agonising pains in my fingers, this quickly spread to toes, ankles and knees. I have currently been given 22.5mg methotrexate and 5mg maintenance dose of prednisolone and been assured by my Rheumatologist that one day I will be pain free. I can't imagine this ever being the case to be honest !! My diagnosis was Sero-negative Inflammatory arthritis. One of my more obnoxious work colleagues assured me there was not such thing and that the meds were probably a precortionary messure??? Anyone heard of these meds being given as a precausion?? I'm confused and pretty baffled by the whole thing!! Thanks for taking the time to read xx

Comments

  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    Hello angeleyes and welcome to the forum :D Of course you're shell-shocked and you're right – very few people understand any form of arthritis except as 'that thing that old people get'. It's very frustrating but just something we have to learn to deal with. Believe me it won't change. Ignorance must be bliss, eh :roll:

    I'm so glad you've got a good husband. Treasure that man, they are very useful. Me too. I also have two 'boys' but mine are now a little older than you, both with sons of their own. I have RA and it was very difficult when they were young.

    As for your work colleague. There most certainly IS such a thing as sero-neg inflammatory arthritis though a lot of people on here heartily wish there wasn't. Try telling her to read this http://tinyurl.com/knh929m (By the way Arthritis Research UK is a site you can trust unlike many out there.) The meds are not precautionary. Methotrexate is a normal treatment for any inflammatory type of arthritis. Prednisolone too but they usually start people on the quick-acting pred then tail it off as the methotrexate finally starts to work. You will find there are a lot of 'experts' out there. For facts, stick to what the docs tell you. Except......

    …..painfree? I wish you well but I've never achieved that :xmas_lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Angeleyes
    Angeleyes Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you so much for the reply, I am so greatful to have someone who knows from experience what I am talking about. I was beginning to believe that it must all be in my head, even though the pain in lots of my joints and extreme fatigue tell me differently!!

    I think this is just going to be a massive learning curve and I'm going to take your advice and ignore unhelpful opinions of those who feel Dr.Google qualifies them to diagnose and comment on a condition they obviously know nothing about!!

    Thanks again for taking the time to post.

    Have a lovely evening x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Good morning! It's lovely to meet you but I am so sorry that you have had to find us. Obviously your medically trained and qualified colleague missed that 20 minute lecture about sero-negative auto-immune arthritis, such a shame . . . :wink:

    I have a sero-negative type, namely psoriatic arthritis and that, in turn, has led to osteo in a number of useful joints but that's because I went for five years without any medications (well, that's my explanation for it). It sounds as though you have received a quick diagnosis, I can understand the shock and yes, you are on a steep learning curve but all of us on here have been through something similar and will be more than happy to support you through these early stages. I am on a triple therapy including meth and I know that this has slowed the progression of my PsA - they don't help the OA because that is a different kind of arthritis. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    It's certainly not just in your head. If only :roll: That's a wise decision, angeleyes. Don't let the ignorant upset you. You may well find that some people surprise you by how unhelpful and uncaring they are while others whom you hadn't been particularly drawn towards surprise you by their understanding. Remember we're always here to offer what help we can.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Angeleyes
    Angeleyes Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you both so much for your reassurance. It is amazing that a few kind words from strangers can make you feel so much better and how a few careless words from someone who has known you for 5 years can break you down!!!

    I'm sure I will be visiting this forum often :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Not many people take the time to look in on this board, most of the creaky action happens over on the Living with Arthritis bit, you may find a read-through on there of interest: that's where we discuss meds, side effects, appointments, treatments and all the other factors , that make up the arthritic life. The meth will suppress your immune system, the aim being to reduce disease activity. The pred will help to give you a boost but it only disguises matters, it does not 'fix' the root of the problem. A faulty immune system cannot be fixed as such, just dialled down so it doesn't trouble the body as much.

    Has anyone told you to have a 'flu jab? As you are now taking an immune-suppressant drug you are entitled to (and should have) a free jab, please talk this over with your GP. One of the downsides of a reduced immune system is that we don't know we are ill until an infection has taken a good hold on us: we don't produce symptoms until then. Please be very conscientious about hand hygiene (and that of your family too) and prepare to become good friends with anti-bacterial wipes which are to be used frequently when out and about and indoors too, for that matter). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Angeleyes
    Angeleyes Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you dreamdaisy, will have a read through that forum. My rheumatology nurse insisted I had the flu and pneumonia jab so all immunised up!! She did warn me that the jab would not stop me getting the flu, it would lessen the severity of symptoms. I will invest in some antibacterial wipes, anything to stop having something on top of arthritis!!

    Thanks again for sharing your knowledge xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I've lived with this for around eighteen years so I've learned a little along the way. :wink: Encourage the children and spouse to use hand gel, I once worked as a private tutor for dyslexics and all clients became used to my opening the front door brandishing hand gel. :) I am pleased you've been 'flued and pneumoed - it surprises me how many new auto-immune arthritics are not told this let alone have it done.

    Be prepared to feel very tired every now and again and ensure you get plenty of rest; arthritis is not only painful it is also very tiring, and the only way to deal with that is to get plenty of rest. Those on here who are still working often find that their week-ends disappear in sofa-sprawling and snoozing. Enjoying yourself is more often than not followed by 'payback' when your body punishes you for daring to have a good time! :xmas_smile:

    Welcome to the arthritis rollercoaster, we're all on it and we completely understand the effects it can have on our lives. It may be worth your while printing two articles on the interweb to help explain it to others: one is called 'The Spoon Theory' and the other 'There's a Gorilla in my House'. Both give clear but succinct explanations of the challenges in living with a chronic condition. DD

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    Have you got the despatches? No, I always walk like this. Eddie Braben